8/7/05
I keep forgetting to mention that no one enjoys Samuel's videos above more than Samuel! He asks to see "his pictures" every time he passes this desk.
Yesterday, he had a very tun time at the park. He got to jump in one of those huge blow up castles. That was a big hit. He got to run around with Kaysha and Daniel. He also got to ride a pony for the first time ever. He asked about it and we thought for sure we would pay, and then he would get on and change his mind, but he didn't. In fact, he loved it, wasn't scared at all. Of course, it does run in the blood! Daniel and Kaysha rode too. I reminded Mark that in about an hours drive and for FREE, they could just ride our horse, Bud. Samuel spent the rest of the day talking about his pony, Patty. I remember as a very young girl falling in love with little ponies I was able to ride and dreaming of having a horse some day. I bought my first horse at 13. Yes, I bought. I got a job in a stable and I worked and saved. After I got my horse, the schoolbus used to drop me off at the barn and I would ride my horse to work at the stable, and then ride back when I was done. It was about a mile ride one way. It only worked in the summer when the days were light longer though I admit to riding home in the dark a few times.
Anyway, we talked about going out to visit Bud before Samuel's surgery. Everyone wants to go and then Samuel and the kids could ride as long as they want. Boy won't Bud be surprised! I haven't seen him in a few years. I have some sewing to finish up and hope to be done by Monday so we can possibly go Tuesday and then be back Wednesday to get ready to go.
Awhile back, someone shared with me that their family member had a baby in the hospital with some serious problems and asked what helped us while staying. in the hospital. I thought I would copy some of the things here because it is pretty fresh in my mind as I think of what I will be taking again. Obviously we are talking about a major hospital stay, not a one or two night thing. Like that life shattering day when we realized that we would not be coming home for a long time. Or just a stay when you know when you will be arriving, but not when you will be coming home. My last open ended visit lasted 15 days and let me say that after about two to three days, you have seen it all, done it all and tasted all the rotten food you want. The days are long and if you are unlucky enough, the nights can be even longer.
Anyway, on to the list. The #1 thing that helped us was getting a laptop. It is the first thing I pack when we go. There was nothing worse than not being able to get info on a drug, condition, or the current scare tactic they were using on us. Most hospitals have computers but you have to leave the room to use them. That is a pain with a little baby. For the first few months of our stays, I never left unless Mark or my Mom were with Samuel. It is also invaluable for communication and someone living at the hospital will need a lot of support. Notes and e-mails were always appreciated. Entertainment value of a laptop is good. Movies, DVD's, games, etc. If you are a close friend or close relative, talk to them every day, whether it is by phone or note, it means a lot. If you are a rainy day friend or relative, go on living your life and don't bother because it is ANNOYING! When I am staying at the hospital alone, I have a LOT of time on my hands and my mind seems to wander into the unknown, be it memories, what if's, etc. I don't want to talk to someone who has not walked this journey with me from the start. They just don't understand and it is like speaking a foreign language with them. If you know someone who is just beginning a journey into the unknown, be it some life tragedy, either choose to be a good friend to them by forgetting yourself when you are with them, or simply remove yourself. Nothing becomes more clear in a tragic event than people's intentions. I do not play games with people and never will, I will simply stop you in your tracks or avoid you altogether. Most people are not like me though and will try to navigate an uncomfortable situation.
A radio is also nice to have. Hearing news, and things that make me feel I am pert of a normal world. Also, it can drown out the hospital noise especially at night. I brought CD's in last year and would sing to Samuel and that helped me feel normal, but singing has always been a good outlet for me.
If you are a friend who lives close to the hospital, go visit when appropriate. The days are LONG! Visitors are a nice distraction. Do not bring small children along whenever possible. There is not much for them to do and if there are tubes and cords hanging off the bed, it is just way too tempting.
If you are calling or visiting, remember that their time is precious and be aware that they may need to go very quickly, or may not be able to talk at all. Don't be offended. Ask if they can talk, or if they want some company. It is always nice when people do this.
Smaller things that help. Gas cards, cash. Any amt. Eating there is awful. A lot of places deliver to the hospital so cash is great. Phone cards. I have one, and have the numbers memorized so I just recharge it when needed. I use the phone a lot and can burn through 500 minutes in a week. From Seattle, everyone is long distance.
If you want to send something to help out but not sure of what, find the family friend or family member who is closest. Ask them what to do. Asking the person who is at the hospital what they want or need will get you nowhere because they are not thinking of themselves, but rather their child. And it is very difficult to ask for help or "things". If you are the family member or friend who is closest to the person/family in need, enlist anyone who wants to help and be very specific about the needs. I received a lot of things either for my kids, or for us that were perfect and things I did not even know we needed until they arrived. Gifts for the child are always appreciated because there is nothing to do at the hospital and if you are tied down to an IV pole, you cannot really get them up to walk around or play. Things that can be done in bed are great. Things that can be done laying down. DVD's or videos are also nice because let's face it, TV is about all there is to do at some point.
The bare essentials are nice. A book to read, a notebook to write things in. I have taken our pillows, sheets, and blankets from home on these last few trips. I took my king sized pillow and Samuel and I both shared it in his bed this last time. Hospital stuff sucks. Good smelling soaps, shampoos, etc are nice. An essentials bag is always nice. A razor, hairbrush, toothbrush, etc. Things you might forget but really want/need. It is funny that at home, I can wear the same clothes for two days in a row and never notice, but at the hospital it drives me crazy! And not sample sizes if possible because they are usually brands no one uses and only last a few uses. Real life, good quality stuff like you would have at home because you never know how long you are going to be there. Ask the friend what to send, or to find out if they don't know. The family will tell the good friend everything so they can easily find out tons of info. Home cooked meals by people nearby is wonderful. Or just good take out. My Mom would go get Mexican food and bring it back when she came in. My mom brought me new clothes every few weeks and clothes for A.D. and Samuel. I was 7 weeks post partum at the time of Samuel's diagnosis and my size changed significantly. My Mom never came in empty handed. A.D. got new clothes every week and that was great as she was growing. She would buy Samuel stuff too, always expecting that he would go home and wear it, even when it seemed like we never would. It was really nice because I could not do any of that. Samuel wears his own clothes except when he was puking nonstop or surgery days. When he had a tube coming out of his brain, hospital gowns were just easier, but once he was done with all that, his own clothes just made things feel more normal.
Food or snack items which keep for a day or two in a room, or refrigerated items are also nice. It is often hard to leave the room if you are staying alone. On the surgery days, or if Samuel was just not doing well, I never left, and pretty much starved. The floors do have some snacks but they are all pretty innutritious processed foods that I avoid unless I am dying of starvation. If you want to bring items, ask the friend/family member what to bring so that your items will be used and money well spent.
I guess I cannot stress enough how important the family friend/relative is and how much I have always appreciated people asking them how to help. It just makes things so much easier for me to manage what I need to do. An example that comes to mind is shortly after we came home a church in our town which incidentally does not exist anymore, did a food drive for us. It was really nice and thoughtful but there was so much stuff that we could not house it all. And after going thought it, a lot of the stuff was expired, off brands, or things we would never use. Once Samuel's diet was changed, we cleaned up all our acts. Don't get me wrong, we were very grateful for this help, but we ended up giving a lot of it away, to food banks, or throwing old stuff out. With a little bit of forethought, this could have been a very helpful gesture, but in the end, it just created a lot more work. I had to have my mom come over and sort it all out because I just did not have time. Quality is much better than quantity. That is the bottom line. Too much of something that is not needed just makes more work. If it is possible to find out what the person/family needs very specifically, do that. If you are the friend people are asking, don't be afraid to be very specific in their needs. I never really realized how important this was, or necessary until Kristina really picked up the ball and did this for us without me even knowing it for quite a long time. In fact, a lot of these things I have mentioned, I learned from Kristina, by her actions. Looking back now, it is all so clear. I am so thankful to have had a friend who could really step up to the plate without my even asking or knowing I needed her to. All this from a person I have never met IRL. Thank God.
Remembering siblings of the sick child is very special as well as they are often neglected. I have always appreciated when people remember my other children. Help with childcare is also a very welcome thing because there is often nothing for them to do at the hospital and they get annoyed being there and become naughty very quickly. I have very little patience for this when Samuel is not doing well. I usually have a one track mind while there and am very focused on him.
The single most important thing that helps is valuing the life of the child who is sick. We did not know if Samuel would make it out alive, or even ever go home. My Mom came and took rolls of photos saving every moment, good and bad. I am glad she did. Every day Samuel is with us is a gift. Every day he is happy and enjoys his life is a gift. Anyone who shares our joy is an angel on earth. Much love!
8/5/05
A.D. is better today, thank God! I was starting to get worried about her. It seemed like it was her teeth bothering her, but it has been about a week or so now of misery for her. I hope she is even better tomorrow. That will be a load off my mind.
Samuel had a good day playing and eating us out of house and home. I swear he spends his entire day thinking of what he can eat next. Course, he only eats a bite or two and moves on to the next thing.
We are still talking over what we want to do next week, what to take to the hospital, what to do about A.D and what she will eat. I am trying to get my mind into the positive of all this and as always the Voice of Reason, Monika, is always good at that. And several others have sent me very grounding notes, thank you! I guess my mind is just thinking of what I need to do today, tonight and tomorrow and I haven't really got to the surgery thinking yet so everything you have sent me is just soaking in. Hopefully by the time we go, I will be thinking this is a good thing that can do nothing but help Samuel. But like I told my Mom, if it weren't surgery number 20 something, it might be different. Knowing the drill, how it all plays out, what happens when, and how many recovery days, miserable days, etc....yuck. I guess when it is all new, you just go with the flow and do what you have to do. Knowing it all too well only makes me dread it more.
We will be at the Festival in the Park here in South Prairie tomorrow. It is located at the 3rd Street Park and starts at 10am and goes until 9pm. There is food, and fun for the family though I am not sure as to what. We will probably try to get there in the morning hours sometime so that the kids can nap in the afternoon as usual. If you are local and want to meet Samuel, look for us. He is quite the boisterous child these days as is my entire family so we won't be hard to find, or hear.
8/4/05
The countdown has officially begun. Next week tonight we will be settling into our hospital room for another surgery and another walk into the unknown. I have worked like a madwoman this last week to get things done here all the while making a mental list of what I want to take along. A.D. has not been feeling well and now Kaysha and Mark have slight colds. How annoying! I swear Kaysha has the weakest immune system here. She brings home everything! I don't know what is up with A.D. but I hope she feels better before we leave of it will be a rotten like here for Mark. It will suck as it is anyway, but a sick baby wants mama.
Well, the pool has been a big hit around here. A.D. still screams if I even look like I might put her in it though. Samuel decided today that he would like to jump in off the porch. But the pool was about 2 feet from the porch and he decided today was the day to attempt to leap off it. And he made it! I could not believe that Mr.Fearless made it, or even tried it but I guess he did get both our genes! I called Mark who made him a quick platform to extend the porch over. That worked better except he was afraid to walk out on it alone. Doesn't make any sense to me! He was not afraid to take a flying leap off the porch which was farther away. He also enjoys getting into his boat and singing and I had to take a few videos to share the moment. Last year at this time, I don't think I would have believed anyone who told me I would be seeing him doing this today.
His gut improved and now has gotten bad again. Same old story! Diarrhea today and the G-tube is a spicket spraying everything in site. The skin has broke down around it again. And everytime I hear, "mama, my airbag is leaking," I want to scream. I guess that the bright side of this is that at least that won't be an issue after next week. Then it will be, "My butt is leaking." I am trying to look forward to it and push the doubts out of my mind. Things has certainly fallen into place as far as being ready to go, getting things done, and having the bills paid so that my mind can be free to take care of Samuel and not worry about last months bills. For that I am thankful! I guess God realized that I have enough to worry about without that too. I hope they find something helpful when they get a good look at his gut again. And fix it!
The Oncology Clinic called to give me Samuel's next appt, which was next Friday the 12th. I told them that if our Onc really needed to see us, he would just take a stroll down to the surgical unit. We would not be returning to Oncology for a month! Oh, such joy it gave me to say that.
The RN I visit each time I can LMK what days she was there next week as well as another favorite Rn and it looks like we will be in great hands assuming they get us. Praying a room on their side is available next Thursday. It I have to go, it is always nice to be with the people who helped us get home when Samuel had multiple issues. And they know me and there is a friendship there that is really nice to rekindle. The one who follows the journal REALLY knows me, so I will have to behave, LOL! We are very lucky to have met such great people there and while I hate to go inpatient, I do enjoy visiting with them as long as things are going smoothly. Thank God for putting good people right where they needed to be.
Not much else to report. I still have a lot I want to do before leaving, and need to spend a day or two cooking in prep for us as well as those here. Not to mention the business and finishing things up there. I hope and pray that this is my last open ended stay at the hospital. I pray it is Samuel's last major surgery there and that it is a success. Of course the stay being short would be a bonus too.
Thanks for your notes and prayers. We covet your prayers right now. It is so hard to watch Samuel play today and think of the misery to come next week...... Much love.
7/28/05
Samuel started off the day with horrible diarrhea and a G-tube that resembled a geyser. All for no apparent reason. No chemo for three days, no funny foods, nothing. It continues tonight as he sleeps. he woke up in a puddle, or shall I say it was more like a lake. Totally exploded the bag. I give up on trying to diagnose what the heck is happening. It was very obvious that only ONE method is going to prove anything and that would be surgery. The bottom line is that his gut worked fine from February to the start of intense chemo. And on that exact day, it has never been the same.
After another long hot day of mostly driving, we have a surgery date. Samuel will have his gut reconnected on 8'12. We have to be admitted in the day before for a gut "clean out" before surgery. So I have two weeks to get things done here, and prepare to be gone at least 5 days which is what the surgeon said is the best case scenario. I guess I am kind of planning for worst case which would be longer, a week, or more. It took a week the last time for things to start working again. He has to be eating, pooping and getting regular feeds to go home.
We addressed, again, the continual problem of diarrhea and the surgeon feels that after looking at his butt today, that with good management of the skin and certain drugs to reduce the acidity, things should be okay. Should, no guarantee. But, he looked at Samuel's butt and thought it healed up really well and looked a lot better than the last time which made him hopeful. Sure it is shrinking again, but he felt it looked like a lot healthier tissue now. I am still skeptical and probably always will be when it comes to surgery and Samuel. Nothing is ever straightforward, or goes as planned. Hopefully this time can be the exception to that rule. At any rate, something has to be done about his gut as it is now. They will take another really good look at his small intestine, and the G-tube to be sure that nothing is kinked or array, remove the adhesions again and hope for the best. In our surgeon's mind, the diarrhea is not a bad thing at first because Samuel's anus is so small and it will come out the easiest. They don't want him to get scared to go if it hurts or he has to strain. Great. I don't know which is worse. I see my seamstress making me a whole new dozen diapers really soon. It would be nice if he would just train but I was giving a lot of thought to how old I think he is mentally, which is about 2 and 1/2 and he is nowhere near being ready for that. He lost almost a year of his life to suffering and he just cannot wrap his mind around the potty yet. I could be wrong about that when he starts pooping, and I hope I am.
I pray that this is the right time to do this. Our only other option is to continue with the problems and have his butt opened up every time it closes. Not a great option either. I guess we owe it to him to fix it now while he is little, but I just hate the thought of another surgery, more cutting, more stitching, more unknowns and a possible mistake in the making. It is just unclear to me, and to them, how his rectum will react to poop, and what kind of poop he will have, etc. Monika told me that he doesn't NEED his rectum.....but by the same token, chemo has taken enough of his body parts, I would like to save what little he has left. These last parts will at least help in the dehydration/salt/potassium issues.
Having his clothing fit normally would be nice, not having another thing to take care of, bag and worry about unexpected leaks, etc. We figure we probably will be homebound for awhile after ward if he is pooping all the time. 10-15 times a day is a LOT!!!!!!!! Yes, I hate the unknown. I will kick myself from here to eternity if it doesn't work out. The bad thing in my mind is that we won't know if we don't try. Again, the doctors have nothing to compare to.
We just need your prayers. Prayers that this last wrong can be righted and that the skin miraculously heals and tolerates poop. That the tissue do what it was meant to do. No more loss, no more suffering. I am so tired of it. I just long for Samuel to be normal again. Not some stupid thing plaguing him daily. I have a lot to do to get ready to leave again. Planning, sewing, getting things in order. Our minds turn to Anna of course, still nursing, refusing a bottle or cup of my milk. She is still getting up once if not twice a night. She will miss me a lot. I will miss her. It took a long time to really bond with her but I sure did in this last six months. Kaysha and Daniel will be sad and going in with no return date is very hard for everyone. I am glad they want to admit him the day before as that makes the waiting easier. But I will be alone on that day unless Mark wants to come in. I guess my mind needs some time to prepare itself as well as to think of what things would be the most helpful to bring. Yes, lots to do. Please pray that we can manage this balancing act next month.
On a different note, we will be at Festival in the Park on August 6th. There will be food, crafts, and tons of stuff for the kids to do. The park is on 3rd St in South Prairie. If you would like to meet Samuel and our family, look for us hanging around. We will also have some of our wraps on display and for purchase with Kim and Bob Shaw's woodcarvings.
On that note, I have to take a moment to thank the friends who have stood by us through all of this. So many have risen to the occasion and took the place of those who fell away. Thanks to Kristina and Monika for continuing to be my rocks. I could not do this without your support, love and constant interest in my sweet boy whom neither of you have ever met. God bless you both.
Much love.
7/27/05
48 hours after the first 6MP dose, the diarrhea started. Then tapered off, then came back again. I stopped giving it after the third dose and things have again improved. It has been so hot here that even giving him 1500cc's of fluid through the tube not including what he drinks is barely enough to keep the dark circles and sunken look from appearing under his eyes. When he was eating, I had him cut back to about 600-800cc's a day so we have more than doubled his intake of fluids to try to compensate for the loss and heat. I don't recall this being such an issue last year but we probably were not as sensitive to the telltale signs of dehydration. Within a few hours of getting his "food", he is looking like he needs to be hooked up to the pump. I started putting him to bed with two full cups of water at night to try to reduce the amount of times I have to get up to refill it. We cannot leave the house for even a quick trip to the store without taking his water. Supposedly, this situation would improve by being hooked up.
His butt is almost sealed shut again. Sure did not take long. It stayed open for about six months and now it wants to close all the time. I don't get it. And he is not impressed if you try to rip it back open. We go in tomorrow to talk to the surgeon again. At least this time, it does seem like we have been home for awhile and not like we were just there. Samuel thinks of places he would like to go in the day and mostly he asks to go to the doctor or the hospital because I don't think he knows where else he can go.
On a better note, we got his air bags switched to a bigger size and they seem to stay on at least 24 hours now. The one yesterday lasted two days. Unfortunately, it had come undone in the center and leaked around the stoma without us knowing it and the skin has broke down. It is always something. The bag itself does hold more which is nice since he hasn't woke up in a puddle in the last few days since the switch.
Other than that, there is not much to report. Samuel is happy and loves to play outside but tires quickly. Probably because of the heat. His whole day is consumed with what salty thing he can eat next. That hasn't changed. We would like to get them a little pool to play in.
I have given up being frustrated about Samuel's gut. Giving it to God does work. I did not think I could do it and release it but I guess I did. I don't know what will be plotted out tomorrow but we will all more forward with everything on the table.
Update 7/22/05
Samuel's gut is still doing well. He had a fun day playing, making messes, the usual stuff. I am feeling better as well, though anything would have been an improvement over yesterday. We woke up early to thunderstorms, which was a lovely change. The day was pretty cool in comparison to the few before it. Nothing like last year on this day.
I remember it well because we came home. Samuel came home after 11.5 weeks of pure hell on earth. If almost felt like hell here on that first day because we were having record temps. It was over 100 degrees out and we don't have A/C so the house was awful! I was used to A/C nonstop at the hospital. But it almost did not matter because we were finally home. Home with Samuel. I will never forget it as long as I live.
Mark had come in the night before and hung out with us until bedtime. Then he spent the last night in the hotel. He had to take a load of stuff home, before coming back to get us because it would not have all fit. We had a LOT of stuff in three months time. Samuel's last night did not go so well and I had nightmare type thoughts of the other shoe dropping. Especially when he began puking up bile. We had let him eat the night before and he had his first blockage. Except we did not know it at the time. I had Esther as an RN on the day we left and she taught Mark how to drop Samuel's NG tube. Everything else was in place and we were basically waiting on our Onc to release us and the pharmacy to send up a load of pills. We finally left at 2pm. I asked Samuel if he wanted to go home and he just said no. I don't know if he did not understand home at that point, or if that was all he could say. We propped him up in a wagon with blankets and toys and headed out. I had left the hospital to go to the hotel, but never home. So the ride home felt weird. Weird because it was the first time I had seen the roads leading to where we were. I guess I finally got my bearings on that day. Mark had to go to Fred Meyer and buy Samuel a new car seat for the drive. His old one was just a booster and he needed a reclining type for an infant. He puked on his clothes and blankets just as we left so I watched him most of the way home to be sure he wasn't gagging and puking all over. He managed to make it home. He looked out the window and dozed for the ride home. I wish I knew what was going on in his head. We finally got home and I don't think A.D. knew where she was either. I could not tell if Samuel knew, or if he was happy. But he had not been fed and needed to be so I got busy on that. Not 60cc's into that feed, he puked it all up and I knew we had a problem. We were unable to get the antinausea med at the hospital and our insurance would not cover it at our local pharmacy. Mark ended up driving all over trying to get something. He was addicted to morphine at the time and was getting sick from not getting it as well. But with natural alternatives, we got things moving in the right direction but oh, it was so frustrating. A little scary. But I guess with that hurdle behind us, I realized immediately that we could handle whatever came our way at home. We certainly have continued to do so. Samuel slept with us on that first night at home. He was not a bed hog anymore the way he was before getting sick because he never moved. If you wanted him to move, you moved him, and then he would cry. I still don't know if it hurt, or if it just scared him. We finally figured out that if we told him what we were going to do with him before doing it, he cried a lot less about it. Mark bought him a new bean bag to sit in and so he was either in it or in his bed. Last year tonight, I was so thankful to be home, but so many things were just up in the air. Was Samuel ever going to have a life like a little boy should? It is amazing that in just nine days of being home, Samuel began talking again. He woke up us babbling and by the end of the day was speaking in complete sentences. He still was not sitting crawling, or even able to hold his head up, but when I would walk by his room, he would say, "Hi Mama." And it was the strangest sound and at the same time most awesome words I have ever heard.
Tonight, Samuel sleeps in his own bed, in his own room. He is as normal as he can be. He is a happy boy tonight and enjoying every second he can. I am still thankful to those who got us home and glad that they are able to see our miracle grow up and live. Thinking back to how life was last year today sure makes today seem easy. Thank God! Thank you for your prayers. Is there any doubt that they work? Much love.
Update 7/21/05
I wrote the 7/20 update first thing in the morning and it totally ruined my day. So I guess I will be back to nightly updating because I can just go to bed when done with bad news. My day is beyond ruined tonight so no worries I guess.
Samuel's gut has returned to normal and has been for about 24 hours now. So I gave him his chemo again. We will see how many days it takes for the problems to surface. It has taken about three days for him to recover and I think I gave chemo for the three days previous to that. We shall see if that cycle holds again. I am so unimpressed that Samuel has to be a guinea pig.
I had a long talk with the Surgery NP who knows us well yesterday and told her everything I have been thinking regarding the chemo, diarrhea, and hook up. Her reply was, "That is really scary." I have spent the last few days mulling it all around in my head not to mention the countless other things that consume my day and I am DONE! I feel like I am at the end of the rope tonight. I guess hang myself or let go at this point. I am tired of trying to figure it all out and explain it to people who don't listen, or only hear what they want to. I don't know what the solution is. It would be so nice to say screw it all, hook him up and bye bye Oncology.
Mark says I am just thinking of the worst things, and maybe I am, but I just want to be sure that everyone involved considers everything before we proceed with a surgery that might be a mistake. With the shunts, we had no choice, we had to get something that would work. But with this, it is not medically necessary that he be hooked up now. It would be nice for him, if it is a success, especially in the long run. Nice for Mark who is stuck doing four bags a day. Nice for Samuel to grow up being normal, or as normal as he can be. Who is filling my mind with doubts? God? Or the devil? I cannot tell anymore and my insides just want to explode. Someone prayed that I would cast all these burdens onto the Lord and the realization has just hit me this very second that I need to. I just cannot do everything I need to do in a day to keep the family running, keep the business running, and keep my focus on what is really important because the what if's are just devouring my thoughts, and my joy.
Last year, tonight, was our last night at Children's after almost three months of being in the hospital. I remember it clearly. Excitement, hope, fear, wonder. Mostly wondering if Samuel would ever be normal. Wondering how he would ever walk again when he could not even hold his head up. Wondering how we did that without truly going insane. I just don't ever want to be in a situation of roller coaster surgeries again. Not at the expense of Samuel's body. How many more surgeries are in his future? There was one point where we thought we knew that answer. Maybe two or three. Now, I hazard to guess.
My plan is to document what happens with chemo, and Samuel's gut and then see if our Onc can possibly show up to the Surgery appt next week so I can get them both in the same room and let them have it. Drop all the pieces of this puzzle and let them sort it out. At least then, there won't be he said, and he said repeated by me to one or the other.
Well, that is the grouch report for now. I am off to bed in hope that tomorrow is a better day.
Update 7/20/05
I am starting to feel like this should be called the Poop Updates. On the 18th, Samuel ended up with six bag changes. A new record even for him. It was absolutely ridiculous. Yesterday was another full day of diarrhea and four bag changes, which seemed small after the day before. I got up two nights ago and filled his water glass in the middle of the night five times in addition to him getting food via the tube. He slept better last night and I did not have to get him water but he also got almost 1400cc's of fluid. He is not up yet but I already know he is laying in a puddle of poop. What a crappy way to start the day....pun intended. We are almost out of air bags again even though they sent us 60 so I will be calling about that first thing. Unless I see a great improvement in Samuel's poop today, I will be calling surgery to see if they feel concerned at all about him only peeing twice yesterday despite over 1400cc's of fluid not including what he drank by mouth. All we did was dump bag after bag of water or bile.
Despite all this, Samuel is feeling fine. I guess replacement is the key and thankfully we can do that. But in some ways, he is like a full time job and when things are like this, it is nearly impossible to leave the house. Just easier to clean up the mess here.
We are supposed to go back to the Surgery Clinic next Thursday, not tomorrow. Mark noticed Samuel's anus was already collapsing and closing down last night and attempted to open it again. Unbelievable. Samuel was not impressed with that. Who could blame him? I am just glad that for this, he is not older. I cannot imagine taking Kaysha or Daniel into the doctor to have their buttholes looked at and probed. That would just be the living end.
And as tired as I am of the whole air bag thing, I wonder if hooking him up is the right thing to do right now. I had a long talk with Monika who was unfortunate enough to know what an ileostomy was like, and also being hooked up and she told me that with GOOD tissue, it was agony. She did not know if she could take it. She could not imagine Samuel having to go through that too and especially knowing that his skin is not well. We talked about the diarrhea issue and neither of us came up with any good conclusions about that if chemo is to blame. The chemo, 6-MP, is what I think is causing this is supposed to be taken every day for the next 2.5 years and right now, we are only giving half doses, and then only when things are "normal". I am hoping the diarrhea will clear up so I can again, try the 6-MP and see if within a few days, we get the same reaction. Then I guess I will contact my Onc and Surgery too. It is frustrating because there are so many questions, so few answers and no one professionally, has the time to think about this longer than the five minutes they see us. And no one would even want to think that it is chemo induced, of course! Poison would not do a thing like this!!
It is amazing how just when I think we will have smooth sailing, some new problem arises. Mark and I actually discussed putting the kids back in private school this year since they have had such a hermit like existence for the last year, but after looking at tuitions, and start up costs, and then thinking of the additional burden that I will have to bear.....oh yeah, and then if anything happens to Samuel, I cannot work.....well, they will continue to be home schooled. It is just too scary, not to mention stressful to take on another burden to my load already. They will just have to enjoy gymnastics and tae kwan do, possibly swimming too. At least these are little expenses in the grand scheme of things and all activities that we would enjoy watching them do. And if something happens that they cannot go, I am not out a fortune or ruining their school lives. We wonder if life will ever be "normal" again. Even the activities above are on hold pending Samuel's current issues and pending surgery. I just have a hard time fathoming purposely putting him through another horrible painful ordeal that seems to have the potential of being like the shunt revisions. Try this, and if it does not work, reverse it, then try something else, then something else, all at the expense of his little body. I feel almost scared to send him to surgery at this point and that does not bode well. But no one wants to deal with the air bag for 2.5 more years either. Monika says it needs to be hooked up sooner rather than later for muscle control reasons. When hers was done, all chemo was finished. She also feels like he will need 6-8 weeks of NO chemo for it to heal properly and the last word I heard from the Onc's was 2-3 weeks. Yes, I see lots of problems. At this point, I tend to listen to the advice of a person who has BTDT and always has the time of day for me. She is always thinking about Samuel and trying to problem solve for us.
Please pray that the path be made clear to us soon. I don't want another roller coaster ride of surgeries and problems, like this isn't one already, but we know it could be MUCH worse. Much love to you friends today.
Update 7/18/05
Samuel started out his day today in the biggest puddle of poop ever. His bag totally came off most likely from the weight of diarrhea and was all over him and his bed. He noticed this at 6am so got up early, which we needed to anyway, but not in this way. We have now changed the air bag four times today and the day is not over yet. The second bag fell off about ten minutes into our drive to Seattle. We replaced it along with all his clothes in the parking lot at the hospital. The third bag fell off not ten minutes after it was applied and we redid it in an exam room prior to seeing our Onc's wife, who is an Onc too. The fourth one was done here at home and it looks as it it could spring a leak at any moment. I think that the acidity of diarrhea just eats the caulk away on these as everytime we have some gut issue, the bags don't seem to stay put.
Well, the chemo is working. Samuel's counts....
WBC 4900
ANC 2320
PLT 549k
HCT 36.9
Now I am really thinking that the chemo may be part of the culprit to his gut issue based on what is is doing to his counts. And this is only at half strength and given only when things are coming out normally. I have seen a lot of kids get to Maintenance and not be able to tolerate even small doses of chemo because their bodies are just so sensitive to it. Seems that this has happened to Samuel. What does that mean now? Well, I brought the issue up with our Onc's wife who, of course, thought it had nothing to do with chemo. She wanted the "short story" of the gut problems. So I said about five of seven days, he has diarrhea or no flow, or little flow. It is more concerning now that it is hot and he will dehydrate quicker. But of course, as expected, no solution was offered. Just an "Oh." And onto the next victim. I am really thinking that his gut can only handle so much chemo before the scar tissue acts up, swells up and acts like a blockage. And that may be why no one can see it. This is exactly what the surgeon has described to me. And it will get better, and you think you have it licked, and then something will irritate it and it gets worse.
The long term problem with this scenario is that once hooked up, Samuel's anal tissue will not hold up to this acidic and toxic waste. Right now, it is a major hassle and PITA to deal with. But once it starts burning tissue that is already ruined, that could create a new set of problems. Unless, like they said, it will grow mucus back and toughen up. But I think we can all think of a day when our butts were raw from diarrhea and how long it took them to heal once it stopped. Samuel is now on day two of diarrhea. We have been told that once hooked up, he will poop 10-15 times a day and that is assuming that everything is "normal". Diarrhea may double these numbers. I don't even want to think of how that new torture will make Samuel's life.
Samuel will go off all chemo for surgery and 2-3 weeks after that so I guess we will know more when they get another good look at his gut and see how things go after hooking it up. Samuel's colon was destroyed by poison and acid literally burning holes through it. He was pooping inside himself for at least two weeks before it was removed. The biggest holes found in his colon were 2cm in diameter. It would not take long to get that type of damage in what is left if things are not gotten quickly under control. More damage, means more removed, less chance of him being hooked up for life. Permanent stoma. And we see how well that has went.
The side effects of both chemo meds he is getting include diarrhea and "GI irritation", meaning, eating the lining. But I find it interesting that an Onc would not concede that this might be the culprit. I guess I will start experimenting again because I seem to get a lot better answers to my questions with my own "clinical trials." The whole thing just sucks.
Kaysha and Daniel have been at Mark's parents again for the last two days. They have a pool and that keeps them glued there. They also have a big yard and two cousins who live there to play with. So they got to miss out of the joy of today. The visit actually went smoothly, meaning everyone was on time for once, including us. We did walk out by 1pm. It always seems to take forever to get home. Samuel's spinal tap went well according to those who were there and he is a happy boy playing. In the last three weeks, he went from 91.5cm to 97.2cm tall. No wonder he has seemed to grow out of all his shirts. Funny, only his top half grew. His pants size has remained the same. I looked up his weight/height average to see where he ranks these days and his is about 67% for height and 85% for weight. He seems small to me but I guess that is because all the rest of the kids have been consistently off the charts. A.D. is in the 90% on both height and weight. Well, she eats well! Daniel is huge, bigger than Kaysha and two years younger. No petite children for me I guess. I will be the shortest someday.
We came home and spent some time playing with Samuel while A.D. took a nap. It was nice to just sit and play. He started calling me Mommy again. He usually calls me Mama so I am not sure why the change up but it is sure cute. He is so sweet when he feels good. It is just not fair. He handles things so well these days, it is amazing how much he understands, and accepts without question.
I was just thinking today, we have 2.5 years more of chemo to try to deal with.
Well, bag four just fell off so make that FIVE air bags today. I guess I will be calling the supplier tomorrow before we run out.
The weather was lovely today and I tried to enjoy it even though we were going to the place I hate. I think we need to take another day away very soon. Just as soon as we get the air bags under control.
Much love.
Update 7/17/05
Samuel's gut improved and was even better than usual up until today. I think he must know we are going into the clinic tomorrow because again, it is just in time for another no food or drink day. He will have another (yes another) spinal tap tomorrow. We haven't seen his labs in almost a month. I managed to get his appointment and spinal tap within 40 minutes of each other so hopefully that means we can be out of there by 1pm or so. I am sure it will be another GREAT day. Certainly shaping up into one tonight.
Now, I really thought I had the gut thing under control. And now, he is back to diarrhea again. Today it seems worse than usual because it is hot here and we have no A/C so while outside it is in the 80's, inside, it is a lot hotter. Samuel dehydrates rather quickly in hot weather as I found out yesterday when everything seemed good but yet his eyes started sinking in. Thankfully, he has the tube so we can get fluids in because while he will ask for a drink, he does not drink near enough. With the amount going out today, he needs about double as much going in. He hasn't ate anything that would cause this and I really suspect that his gut is just really sensitive to chemo. When his gut is okay, I will give it. Then about three days later, everything for no apparent reason, goes out of whack. Then a few days off chemo and it is all okay again. Hmm. I am sure it is all in my head and would be poo pooed by our Onc immediately because the dosages are so minimal. His blockage sessions seem to go hand in hand with limping since he was doing that again earlier.
Samuel has been in good spirits for the last few days which has been nice to see. My spirit has been down but reflecting upon where we were last year at this time puts it all in perspective. This marks the one year anniversary of Samuel eating food after three months of starving himself. He also started trying to talk a little. One word here and there. We took them whever we could get them. I will never forget one night about 2am he woke up and said "quack quack." I always left Baby Neptune on at night on repeat play so if he woke up, he would see his friends. Those little things gave us hope. It was just weird because one day, he would say a few things and then for the next week, nothing. Looking back now, it is obvious that the VP shunt done at that time was working, and started taking the pressure off. But it wasn't until they adjusted it down that he woke up the next day and started talking in full sentences. Of course then, it all pooled up in his tummy. We were thinking of going home last year at this time. Really going home. It seemed so surreal then. I remember letting my Onc know that I wanted to go home Thursday the 22nd and that that should give them enough time to make it happen. I thought we would feel freaked out about every little thing once we got home given the roller coaster ride we had been on, but instead, once we regained control, those thoughts and feelings never really came into play. I have never felt as freaked out about anything that we have dealt with here as I did at our former hospital. I don't chink, that in my entire life, anything has scared me as much as certain things did there. Last year we were trying to figure out how we were going to navigate a horrendous chemo protocol, and still have Samuel alive. That accounted for some awful thoughts. We had to figure out how to operate as a family reunited again and I think that alone took me about three months. I still don't operate in the "world" the same as I used to. I probably never will.
My mom called the other night and we got to talking about the "best years of our lives." She was feeling like she had already lived out the best years of her life and it made me ask the question, "Have I lived the best years of my life?" Her answer was that she did not even want to fathom that. But it really got me thinking back, and ahead. I visited with Kristina about if this was true. Things in the world seem to be getting worse and worse. Disaster is all around us. Certainly I don't consider childhood my best years. Teens sucked. Twenties were okay. I guess I consider the year Samuel was born to be the best year. With his birth, everything changed. I lived in a state of bliss for that year. He was a gift from God I did not even know I needed. He came into our lives and became the center. He still is. But when he was born and for that first year, life was easy. We had time to sit and watch TV together. We could make plans for the future. We could play, do things without worry. I got pregnant with A.D. just after Samuel turned a year old and that was nice, but busy. Take care of three kids, run a biz, and be prego and tired makes for a long day. Okay, so that all out, I can think of one year in 32 that was actually bliss. Pretty much every other year, some family tragedy happened, or other unpleasantness. Mark and I both worked outside the house for the first five years of our marriage. Are the best years of my life behind me? I sure hope not. Hopefully the most awful year of my life is behind me. In comparison to that, almost anything is good. I will keep that in mind and try to remove the morbidity from my thoughts. It is just hard on the days when it seems we have taken two steps back again. Hard not knowing if this will ever end, and end well.
Well, it is beyond bedtime for a day when I have to get up early. Thanks for your love and prayers and notes of encouragement. Much love.
Update 7/12/05
It is amazing how a 30 minute procedure can take the entire day. We left at 8:30am and did not arrive home until almost 5pm. A very long day of waiting around.
Good news. Bad news. Anyone surprised?
Samuel's anus had completely collapsed and a sheath formed. I guess that this was a bigger area than the last time they opened it up. So, now his butt will be sore again and we are to put cream IN it daily to try to keep it open, promote proper healing and hope it does not "narrow" again. The surgeon wants to allow 2-3 weeks for this and then meet in clinic again to schedule surgery assuming it is still open. Samuel's rectum and pouch look as they might expect for tissue which has not been used. The surgeon feels that the anus closing up will stop once he starts using it again. However, because of the extensive damage there, pooping will be very painful for at least two weeks, maybe longer and might require medication to reduce the acidity of the poop while the area heals and toughens up. Samuel's skin is not normal but he hopes that it will thicken and toughen up with time and use. But he also told me point blank that they have never seen a patient with this much damage in that area and hooked them up. But despite that, he is still hopeful. So this is mostly good news and I should be happy, other than the aftermath of recovering from another abdominal surgery and learning to poop again, like every five minutes and having it burn like fire from the insides. Yes, that is just great!!!!
Bad news. This puts all the surgery stuff off but at least another month, possibly longer. AND, there was very little mucus in his rectal area so that is now contributing to the blockage issues at all. I hoped that maybe it was and would all go away. But no such luck. And now we are walking down that road again. Samuel's g-tube began leaking about 30 minutes before the EUA and within 20 minutes ruined all the skin around it. I talked to the surgeon and told him that despite all the good reports, we still have a problem. He noticed the skin around the tube and also noticed the ostomy output turning to water, mentioned something about getting GI involved to possibly drop a scope into his tummy and have a look, but left no gameplan with us. So, we just sit on this problem for another month or longer and hope it gets resolved in the next cutting. I am not happy. If Samuel did not have a tube, we would just live there due to dehydration. So it is a blessing, and at the same time, a bit of a negative in getting help. And what can they realistically do? Nothing. No study shows an issue. We can either sit and work it out here, or sit there. Even if they did find something, it it requires surgery, it will still be on hold for a month.
And while this is not the worst thing we have had to deal with on a daily basis, the fact that it continues and continues and continues is beginning to wear me down, try my patience and steal any joy I might have once had. Some days it all seems in vain. We do everything we can to help him, and two days later, right back where we started. And as Kristina points out, we are never done. There is no end to the hospital trips, visits, surgeries, long waits, stress, suffering. There is nothing to really to look forward to. I know that I will absolutely be dealing with Samuel's gut tying itself into invisible knots for the next month. I know that despite telling our surgeon point blank, there is nothing that anyone is willing to do about it. I don't want to put Samuel through endless tests that prove nothing. I guess it is easier to just deal with it and shut up about it. But still I am just annoyed! Annoyed that his butt healed shut again, even worse than the last time, annoyed that we have to wait yet another month to get a surgery day. Annoyed that even that may not be the answer, might make things worse, maybe not. Who knows? No one. I take it back, God knows. And does it not seem like this keeps being pushed back and pushed back? Is there some reason here I am just not getting? Is this just not meant to be? I dread thinking why, what if?
And there is always something to make the day memorable. Today it was the anesthesia. I guess they chose gas vs Propofol and Samuel was HORRIBLE when he came back. I mean, he was not happy to see us, he was pissed. He was inconsolable, uncontrollable, and unreasonable. It was like that for two hours after. I had to leave the room to talk with the discharge RN because he was screaming so loud I could not hear. And someone decided it was better to start an IV vs use his port so he came back with that all taped to his hand. The first thing he said was that he had a boo boo on his hand and then proceeded to try to rip it all out. I was not happy and asked why they would not use a perfectly good port! I guess anesthesiologists only know how to do IV's these days. Well, Samuel was so bad that I asked them to mark on his chart that he never get that type of anesthesia again. Usually he comes back groggy but happy to see us and ready to cuddle and be consoled. Today he came back pissed at the whole world. Maybe he got that from me. A child can at least express it freely in public.
All this behind us, I am so glad that I made the Onc visit for spinal poison next week because today was enough to last quite a while. Tomorrow is another day.
Update 7/11/05am
Samuel's EUA is scheduled for 11:15am tomorrow. We have to arrive by 10am. Kaysha and Daniel just left for Bible School and then are going to Mark's parents for the night. Thankfully we don't have to be there horribly early in the morning.
And just in time for this procedure, Samuel's gut seems better again today. Good news, yes, but OTOH it would be nice to have the problem when the surgeon is seeing him vs it all going away beforehand. Lovely, isn't it?
Oh, and other news to note, I think I broke my toe last night, or at least severely bruised the bone. Just in time for walking around the hospital for a few hours....I am just LOVING life today. I guess I will go make something fun and pretty now and shut up.
7/11/05pm
I picked up the phone to get our surgery time, well technically it is not surgery, but done under anesthesia, the whole works in the OR. The person asked if I had a pen and paper handy to write down the info. I guess no one told them how many times we have done this now. So many that I have lost count. Last year at this time we were on surgery #8. Now we must be in the 20's. No, I did not need to write any of it down. I already know the protocol, just need the arrival time and surgery time. And while this may be in the 20th time we have taken Samuel to a surgery waiting room, let me tell you that it is not much easier. I hate watching him go, allowing someone to take him from me. It all depends on who you get for anesthesia as to how far you actually go back. Some have taken him away from me fully awake and others have let me come in and stay until he is out. So you never know what you will get. And Samuel is well acquainted with the surgery induction room. The last time we were there, he started crying immediately. Thankfully, no one will be cutting him, well, not much anyway. I guess it depends on what they find. Our post reports have never been what was expected or even good in the past so I have come to dread them. I hate the time spent waiting for the pager to go off, waiting for a surgeon to come back with news. As a previous surgeon once said, I feel superstitious about reports and the waiting, etc. So, all that said, remembered, and getting the sick feeling out of me, I pray for a good report for once. In fact, sometimes just ONE good can stamp out or right a lot of bad and I pray that comes to pass for us, not only for tomorrow, but for our next inpatient stay. The last extended stay just needs to be wiped clean from my mind and replaced by a good one where people listen, and realize that yes, I do know my child. No fighting over whose case we should be, people just doing what needs to be done and getting Samuel fixed. Getting us home again and closing the "air bag" chapter of our lives. I don't know what life will be like after that and my excitement is dampened by that thought. Thoughts that it might be worse for Samuel without an air bag just because of tissue damage, blockages, etc. I think I would just die inside if we found out that he needed a permanent stoma because that tissue never toughened up. And honestly, I don't think anyone can say for sure what will happen at that point because no one has seen a case like Samuel.
I keep thinking that I wish we would have been given a choice as to whether or not we might want to deal with this for an undetermined amount of time. I don't know the answer to that question either. Then the thought dawned on me that since we did not get a choice, it is simply up to God to right this wrong as He has all the rest of them thus far. Samuel should not have to pay this price for his life. He did not ask for this and while now, he is unable for communication reasons to complain, it may not always be that way.
Thanks to those who took the time to write me. Forgive that I have not written you back. Know that I cherish your notes and your prayers. I have been busily getting things done around here in prep to not be here tomorrow. My mom told me to go ice my toe but I told her I did not have time to sit down to do that. My philosophy was to walk it off and thankfully, it has worked. It is really bruised and still swollen but seems to be mostly numb for now. My Mom has one word for me, stubborn. Yes, I am! I prefer to think of it as determined.
Samuel is about the same as yesterday, which is an improvement over the last few days before that. Please pray for a good report tomorrow and everything to go smoothly. After that, our next Oncology visit is not until next Monday assuming we do not get a surgery day before then. Much love.
Update 7/10/05
No improvement. Tonight we play "What's in the Air Bag?" Have we all gone crazy? Sure seems like it some days. Tonight he has water and chunks of undigested food again. Something is breaking up suddenly and in big pieces. But just as quickly, it can all just revert back to diarrhea so I don't get my hopes up. Samuel is still a grouch and so am I. We all just hope and pray that opening up his butt fixes this. Else, then we will just wait on surgery to get us in. We had to wait two weeks for Tuesday's slot and that is just a 30 minute slot. The hook up surgery is like 1.5-2 hours. A bit more tricky to squeeze in. I am to the point now, where I just want this fixed. Once and for all. But alas, I know that THAT in itself would be a miracle. Please pray for our endurance in this, because obviously we have come down a long road already but the end is not in sight. Much love.
Update 7/9/05
Samuel is not better, in fact, he might be worse again. He has just been in a fowl mood as well and it is putting me in one just dealing with it. I don't blame him, but this has gone on long enough. Tonight, this is feeling like a cruel joke. I don't normally drink, but I am going to enjoy some alcohol in the hopes that it will calm down the fury in my soul.
Everytime we have someone look at his gut, they see nothing wrong. Obviously something is still wrong. I feel so disgusted right now because we have BTDT just LAST WEEK, last month, a few months before that, and so on. And it got better for a few days and now it is worse again. Adding insult to injury, he is hungry and wants to eat. In fact, his G-Tube is leaking like crazy because his stomach is full, and he is having a fit about being starved. It would be much easier to deal with if he wasn't constantly asking to eat, and then having a fit if we don't allow him to. His air bag is full of bubbles again, from a bubble bath that happened yesterday. So we have very little and slow output that is again, diarrhea, or water with undigested food. All I have thought today is that this is the price we pay, Samuel pays for his life. What kind of life is this? What does the future look like for Samuel? Sadly, only time will tell.
I laid him down in his bed tonight to try to clean him up for the 50th time and his G-Tube resembled a geyser. And it was closed! His clothes need to be changed every ten minutes because either his tube is leaking or his air bag is falling off. I feel like I am at the end of my rope tonight. I am so sick of this and poor Samuel doesn't know why this keeps happening to him. Honestly, I am to the point of realization that he should just be in the hospital and let the surgery team sort it out. Anyone who knows how much I despise the hospital these days will understand the desperation of that statement. We have certainly given it our all. Since we are going in Tuesday anyway, I don't have any thoughts of going before then and it could possibly be his closed rectum causing this. If that is the case, then opening it up should right everything immediately. And of course, we are not emergent so we can either sit and wait it out here, or wait it out there.
To my knowledge, Samuel ate nothing to cause this. The only other explanation is the surgeon's. That there is scar tissue from chemo, etc, and the section swells up for awhile and then relaxes. Swelling up would "seem" like a blockage, and then it would get better. Interesting that we started oral chemo last week and after a few days of that, this. But I am SURE it has NOTHING to do with it!@@ Well, if it is this, then there is nothing I can do but wait for the intestine to relax. This won't happen quickly when a certain boy wants to EAT and stress it out.
I reread some of the journal today from February when we were inpatient and that awful experience! Funny how time has not smoothed that memory out. I never want to be in a situation like that again. Roaming around a busy hospital trying to find a quiet private place to cry will never leave my memory. And looking back, I know I was not in my right mind at that point. There was just far too much going on, for far too long. I remember calling a OR RN friend to ask if I was pushing the limit and about to be thrown out. I am quite sure I would push some limits now. I just dread the thought of going in with another "issue". I pray we get a good report Tuesday and by some miracle, opening up Samuel's butt fixes his gut. Else, I think I am going to lose the little patience I have left dealing with a boy who is grouchy and mean because somehow he knows something is wrong even though he cannot express it.
Well, I can think of nothing else good to say so I will close. Please pray that we will know how to help Samuel, whether it be here, or...you know where. Much love.
Update 7/8/05
Well, that did not take long...Samuel's gut is messed up again. We are back to little output, diarrhea or water with chunks. He is pretty upset that he cannot eat food again and we cannot figure out for the life of us what has caused this. We have only allowed him to eat things that dissolve easily and up until last night, everything was okay. It is SO annoying! But I guess as I have thought this whole time, only when they cut him open again will we know the truth. And of course, I guess we will know more on Tuesday. Other than that, just normal stuff around here, lots to do, so little time for FRUSTRATIONS!!! UGH! Samuel is on his third air bag today and we hope it will make it to tomorrow now that it is almost 11pm. He has gotten up to explosions for the last few mornings. Oh, how nice it will be to see that go away! I just pray his butt will tolerate poop again. And of course, this is something else no one has really gotten into, what the long term will be like. Okay, that is too much to even think about right now so I will just close this promptly and head to bed. More tomorrow.. Much love.
Update 7/5/05
Well, hurdle one behind us. All looked really well on the GI study and had everyone smiling. The barium was coming out into Samuel's bag within one hour which surprised us all. The last study it took over four. That was the one where everyone said everything looked normal, and now today, we had the same doctor looking at the films and she told us that last time his gut looked enlarged. Well, no one told us that last time so that was news today. After all the barium went through, Mark was able to see his entire small intestine and they were able to move it on the screen by moving his abdomen and it moves freely. If there are any adhesions, they could not locate them. To the doctor, Samuel's gut looked very healthy and the fact that the barium came through so quickly is a very good sign indeed. After all that, my question is...why can he not eat food and have it go through normally? I guess we will have to get that answer in surgery. But, that won't hold us up as far as surgery to hook him up goes! Next Tuesday is his EUA to reopen his rectum and examine things again from that end.
Samuel did not enjoy the 4th. He was not impressed by the loud noises, smoke and lights. A.D. was okay at first but decided she did not like it either. Kaysha and Daniel wanted to blow everything up. They spent last night with Mark's parents so as to miss the early day today. They had a blast. We went to bed early but got little sleep. 5am came early and we had to wake both A.D. and Samuel to go. We were thankfully home by noon but we are all beat, grumpy and of course the kids only napped in the car so they are running around not wanting to sleep, or be happy. Mark is picking up the kids right now so I hope that Samuel and A.D. will perk up a little then. I guess it will be an early night.
I am looking forward to a few quiet days at home. We have been having some serious conversations about just doing the bare minimum we need to to this house to prepare it for sale. Cut our losses and get out. Life is too short, too full of unknowns to not enjoy it. We all agree, we need room to breathe, roam and be free.
Thanks for your prayers and friendship. Much love!
Update 7/4/05
Happy 4th!
As I get ready to go join my older children for celebration, I just had to get a few things down as I know my time won't be my own later.
It has certainly been a weekend for reflecting back in time. It struck me that in all my very clear and vivid memories of last year at this time, I have forgotten a lot of what Anna was doing. It seems my memories of her at that time have faded. Most of what I remember of her at the hospital are late night RN's coming in to do their four hour checks and waking Samuel, who would scream and that in turn woke Anna. Then they would leave and I would have both of them to try to get back to bed. Some of the RN's seemed to have sense about taking care of two children and others did not. One idiot thought that weighing Samuel at 4am was a good thing to do. Another thought that she absolutely had to have a wet diaper by 6am. In the early days, I did as they wanted but boy by the time we got to Seattle, NO WAY! And it seemed that the majority of the night RN's were young and "dumb" so they got educated real quick in some cases. It seems like common sense to me that I am not going to pick my baby with the tube coming out of his brain up at 4am to weigh him knowing the horrible fit this will cause. LET THEM SLEEP! No, I don't miss that.
We used to cover the hammock with a big blanket in the day time so Anna could nap in semi darkness. After that, we referred to it as the "birdcage." Lots of people came in and never even noticed it. Probably thought I was a colossal pig, which incidentally, I was. Trying to manage her and Samuel during procedures was also not fun. I used to lay tons of blankets on the floor in our room so she could play. She was not crawling yet but played with the toys. If she got upset and I could not get to her right away, I would quickly undress here and let her play naked. I could usually get another 30 minutes out of that. I would try to lay her with Samuel but he always protested by screaming. Toward the end of our stay though, I would sit her next to him and ask if he wanted to touch her hair and then help him lift his hand to do it. He was getting pretty good at it by the time we left in July. But other than that, there is not much recollection of Anna inside the hospital.
Most of my memories of Anna are outside the hospital. Either at the parent apartment when we were at our former hospital, or at the hotel at Children's. I remember I used to try to pretend I was a single mother when we would go stay at the apartment alone. Probably a coping mechanism but I used to imagine what life would be like, just Anna and I. I used to plug up the drain in the bathtub there with a piece from my breast pump so we could take a bath. They had the tub fixed so you could not plug it up with a lever. Guess they frowned upon bathing. But it was our only escape. I would get her out and lay her in towels on the floor. At home I just would have Mark come and get her. There were two horrible twin beds there and she slept in one, and I slept on the other. I would wake early to shower before getting her ready to go back to the hospital. At the hotel, we lived with Kaysha and Daniel who could help entertain her. I pretty much went there in the afternoons to swim and play with the kids. Take a bath, freshen up and compose myself to return. Anna always enjoyed the pool there as did we all but it somehow always felt wrong knowing Samuel was not with us. I told Mark today that I wished we could go back to stay with Samuel for one night, just to right things in my mind. Take him swimming, etc. People always watched my family at the pool and I just wanted to scream out that I had four kids, not just three. Others would ask if we were on vacation and then go on about how they were. One nice older man played with the kids quite a bit in the pool which was nice because I was pretty worthless at that. Plus I always had Anna. One day, we met a nice lady with two daughters pretty close in age and similar in age to Kaysha. They hit it off and I visited with their mom. They were from New York. Anna sat wrapped in a towel in my lap and sometime mid conversation, I felt her start pooping! Great! I opened the towel and peeked in to see bright yellow everywhere. I pondered what I was going to do next since my kids were having so much fun and I was at least enjoying visiting with someone too. I got up and deposited the yellow towels into the dirty basket...someone was going to get a nice surprise come laundry time, and took Anna to the shower and rinsed her off as best I could. But her suit was forever stained yellow. We still have it to this day and all refer to it as A.D's Poop Suit. She did this one other time while there as well. Fortunately never in the pool but her timing sucked! She loved the pool though.
Kaysha and Daniel always enjoyed meeting new kids and playing in the pool. It is nice to have kids who are not shy. While the hotel was great, I missed Mark whom I only saw in passing because we just switched off who was staying but never stayed together much because all the kids in one little room was too much for anyone to stand for long. Things have not changed much since then in that respect. All I can say is thank God this is behind us. I will be so happy when it is in the back of my mind rather than on the tip of it.
I have realized something very interesting about Samuel in the last few weeks. He has started sneaking off and getting into things, exploring, making little messes and in some cases BIG messes. It reminded me of a two year old. In fact, I was thinking that at his age, he would be able to go to preschool this fall. And then thought, oh, there is no way he is mentally ready. I mean, he is very smart, there is no doubt about that, but in terms of play and learning by doing, he is still about 2.5 years old or so. Because he never got to do it. He learned a lot by watching us and listening, but was not able to do the things normal toddlers do during the second year and so now he is. I guess it makes perfect sense when you figure he lost almost 9 months of his life to horrible problems that made him unable to play or be normal. Now that he is able to play like a normal boy, I guess all the thoughts he should have had as a two year old are now occurring to him. Thankfully, he does not want to open the front door and run away anymore, which he was doing prior to diagnosis. The funny thing now, is that A.D. seems ahead developmentally and he seems behind. They are about on the same level there!
I spent some time going through the old journal from last year and thinking about things, remembering.... But my own words really struck me from an entry on 7/9/04. Samuel had had the third ventriculostomy done and was in the ICU to monitor the pressure to his brain and our Onc came in as a "concerned friend." I wrote....
Our Onc mentioned the third ventricle being thickened and pondered aloud that maybe Samuel had Meningitis some time ago as well. Then mumbled something about neurological changes that were not reversible and I cannot even fathom Samuel not talking again so I rebuke that now and pray that he will go home and talk a lot.
This really stopped me in my tracks as I realized the magnitude of the power of thoughts, and belief and choosing whether to believe what is staring you in the face, or to make the choice to believe what God says, that we are healed. I prayed over and over that God wanted us to live and live abundantly and then would point out to God that Samuel's condition was NOT living abundantly. It just gets me today how much faith and desire I had at that time to see him better. I rejected many diagnosis and professional opinions in favor of God's Word and it has come to pass. It is truly amazing to look back. Painful, but amazing to realize that we are a part of so much more than we realize. I have been thinking of today, and Samuel's gut issues. We kind of laugh at the thought of his colon growing back, but if we had enough faith back then to believe that our boy would go home and talk a lot, when everyone else was thinking that he would never be normal again, then we definitely have enough faith to believe that his colon can grow back and this area of his body can be healed just as miraculously. God is only limited by my thoughts and beliefs so I cast that down now. Currently his rectal pouch is stapled shut, but when they reconnect it and it is free to grow, I pray it will grow back and restore itself. That would give some doctors something to talk about wouldn't it?
Well it is time to get ready to go. Pictures later.........
Update 7/3/05
Editors Note!!!!
I've made some corrections, and added a few lines help Jen's fuzzy memory-Mark
Samuel's gut did very well up until yesterday when we allowed him to eat. It is very difficult to tell your child he can not eat, especially when at this time last year, we would have given anything to see him want to eat. Well, that plugged up the works again and for the last 24 hours we have again, worked to clear him out. I think we have things back to a little more normal now. Here I was thinking we might be out of the woods and not even need the GI study, but obviously there is still an issue. The GI study is planned very early on Tuesday so there won't be much late night festivities here on the 4th because we will need to be out of here by 6am to make our appt time. NOT looking forward to that. The last study showed nothing when we had all sorts of issues so I hope that at least if we have to go, it could be helpful this time. Samuel has been fine, happy and playing more than he has in the last few days since his gut started working again. He got 24 hours of his usual diet which includes garlic and he was again, bouncing off the walls.
Samuel's EUA of his rectum is on the 12th.
Kaysha and Daniel went to Mark's parents for the next two days, to do fireworks, etc. They have a large rural lot so they can do a lot there that simply cannot be done here. Apparently they already used up all the fireworks. Samuel went for a little while today with Mark when he dropped the kids off and he liked everything but the firecrackers. I like the mortars personally. I am sure tomorrow will be interesting, but short lived.
It has just been the weekend for memories and I surely hope that next year as I think back upon things that have happened, it won't kick me in the gut like it seems to now. And it would be so much worse if Samuel was not here with us so I am thankful he is alive.
I found the only picture we have from the day we first met and actually learned how to use the scanner too. We met at a birthday party for my friend Carrie. I really did not want to attend because I knew few people, other than Carrie and another friend, but did not want to stay home either since I was always looking for ways of escape back then. So I reluctantly went and figured I would be bored out of my mind. It did start out that way. I think my friend Charla went to the store for more alcohol or something, I forgot since I am sure I wasn't paying attention, and ran into Mark and invited him to come to the party. Not too long after she got back, he showed up. I was not impressed. Mark wants me to be sure and mention that I scowled at him. Scowled? Well I don't remember that. I am not sure how he came to converse with me at this party but he also wants me to let you know the first thing I ever told him. "I'm a bitch and you better watch out." Well, that was a fine turn off for most men and at that point in my life, I was convinced all men were stupid and as far as I was concerned the only man in my life was going to be my horse. Mark took this as an challenge he could not resist!! Carrie came over and implied that she could out-drink Mark.. She was already tipsy at that time and apparently enjoyed tequila. Mark poured himself a shot and downed it and slapped the shot glass on the table. Carrie came over and downed hers and the match was on. As Carrie walked away to talk to her friends, clever Mark picked up the empty shot glass and slapped it on the table. Carrie came over and promptly downed another shot glass full of tequila. It went on this way for the next 40min with Carrie having 3 shots to every 1 of Mark's .
My poor friend is the type that should never drink for the personality 180 it causes but at that point, it just did not matter anymore. You would think it was her 21st birthday but in fact, she turned 22 that year. Oh, and this was the person who was supposed to be driving me home! For whatever reason, Mark and I were both there just to kill time and ended up having quite the fun time. I don't recall how I ended up on his shoulders (( she challenged me to wrestle, obviously finding me irresistible )) but I think it was a wrestling match. At some point in the party, I remember my friends being astounded that I was actually talking (((She was putty in my hands :))) to Mark, and having a fun time. We realized very quickly that we both had a similar sense of humor and felt the same way about a lot of things, not just the party and stupidity going on there, but about life. We ended up leaving the party to chat outside while they all settled in for a movie and I recall my friends taking turns coming out to "check" on me. All aghast that I was actually visiting with Mark and even now left the party. When it was time to go home, my friend was obviously not driving me home so I let Mark which again, drove them all nuts. The next day, my phone was buzzing with calls from them. Mark did not call me though because I took his number but did not give him mine. I did call him the next day and saw him again, and again and again and the rest is history. We both talked tonight about the chances of us meeting there since he said that on any other day, he would have refused the invite. And I really did not want to go to the thing either other than it was escape from my otherwise unhappy life. God works in mysterious ways it seems. I am so happy for that!
BTW, Mark did some editing of the above paragraph as you might be able to tell. He wanted to type out "His" version of this day but then realized that typing two fingered, it might take ALL day. ROFL!!!!
My mom called yesterday to reminisce about last July 4th. She remembered coming out to stay the day as she did every Sunday. I wanted her to spend the night as we had just gotten the hotel and Mark had left for home on the 3rd to spend the 4th with the kids. For whatever reason, having him leave me there felt even more awful than at our former hospital. Maybe because I did not know where I was, or if we were ever leaving. At any rate, my Mom did not stay but went home instead. Just a very sad day. Since I learned how the scanner worked today, I dug out a favorite picture of my Mom, Delma and I. Taken at Delma's house when we went down to visit a week during summer.
Well, I realized that today is another first anniversary of sorts. My mind has been racing with memories of this weekend and a few other events that are firmly embedded in my mind. But today, last year, was the day that we gave the reins of control over to our current Onc. Today was the first day I met him and we had our "meeting" with his team. Trying to iron out a plan for Samuel. I remember being very blunt, very honest and not so nice until I asked him how much of a break Samuel could have from chemo and he said 2-3 months. At that point, I was like, "AHH! Someone with some sense." And I allowed them to start chemo in very low doses. Today, last year, I laid my child's life in this man's hands. And he has led us down a very long and windy path. I haven't liked him or some of the decisions that have come about dealing specifically with Samuel's gut, but I think we have all learned a lot. I recalled some very specific times where I let our Onc have it for things that were not in his control solely. First time being a week after we came to Children's, the Neuro surgeons wanting to do another VA shunt and I halted that by calling our Onc in and telling him that there was NO way we were going for that so they could put it in, jerk it out, put in somewhere else, etc. They better come up with a better plan than that. And I was VERY adamant and not budging. He took care of that and they tried a 3rd ventriculostomy instead, and it too failed. But it was something. Then, I made him deal with our former Onc. Later, I made him deal with Infectious Disease when Samuel was denied the right to go outside on an empty balcony in the sunlight after being cooped up for months. I was not happy then and he got us leeway to get out. Later when the surgery was canceled in the OR, I really let him have it for that one, and then apologized midstream because it wasn't his fault. I think I did it because he was the only one who would be honest with us, and get things done. All this made me realize I needed to send him a thank you note for being able to handle all this, and it was a lot, over the last year. I have to give him credit, he can walk toe to toe with me, and that is saying something. Most people balk in direct confrontation with me. He reminds me a bit of Mark in the respect that not only can he take all I have to dish out, but he never has held a grudge. I hope and pray that the road just grows easier from here on out.
Well, I had more to write but I am tired so will save it for tomorrow. Much love and thanks for your continued prayers.
Update 6/30/05
We are all home!
Samuel seemed to turn the corner today, finally! I guess that piece of cheese or whatever it was that came out last night really opened things up because I ended up dumping his bag at least five times last night. This morning it was almost totally full of poop which hasn't happened in quite some time. Especially considering I dumped it just two hours before. No, I did not get much sleep last night. This morning he had almost normal looking poop but it continues to change back and forth. I would swear to you that more cheese continues to break up and is coming out. He is also feeling better, less grumpy though we are all pretty grumpy after another long day.
My day was long because I was up very early after going to bed late to tie up loose ends. But by the time we needed to leave, it was obvious that we were not going to have to worry about an admit because he was doing so much better. I am really REALLY thankful for that.
We saw the surgeon who did Samuel's ileostomy revision and he really wants to close up the stoma and put him back together, but is also being very cautious about the timing. Another EUA, or exam under anesthesia has been planned for another look at his rectum. To open it back up and make sure that there is no infection, or further damage from chemo. The last time they looked at it back in Feb, they said it looked good for a hook up. But now, since it has closed up again, they are concerned about the mucus causing an infection. The surgeon told us that someone's rectum closing up is a very rare thing and only happens when extensive damage has been done. Well, we already know that the outside is ruined and not normal. We also know what happened previously to the inside. My friend Tracy reminded me quite some time ago, that chemo attacks ALL the gut, not just the part you are currently using. And we still seem to forget about his butt since he does not use it.
If they find more damage, they will remove the area which means he will lose more of his gut and perhaps further delay him getting hooked up. And another GI barium study has been asked for and will most likely happen next week to see if there is any kink, etc that needs to be dealt with. After hearing what has happened to Samuel in the last month and a half, he is concerned that there was or might be some inflammation from chemo that might have produced scar tissue that is causing the problems we are having now, and they won't go away. If they find that, they will also remove it, meaning MORE loss. It is never simple is it? But, he wants to have the best look they can get before opening him up to be assured of the best chances of hooking him up at that time, lest we do another surgery for this reason. I guess I am not surprised about the delay since we all know we still have problems that are not fully going away. I am sure that the minute I let him eat food, he will be blocked again.
Currently, Samuel has most of his small intestine, a rectal pouch, his rectum and anus. If they remove any more of his rectal area, they will have to build a pouch with his small intestine first and allow that to heal before hooking him up. If there is any inflammation in his rectum when they examine it, we will have to wait for that to go away before the surgery. Basically, his gut has to be as healthy as it can be prior to surgery. If there is a kink or some other partial obstruction found, well that just cannot be left alone either so they will address it.
At this point, we are looking at at least another two weeks of waiting and looking at things. His barium study should happen next week. That is the one that takes half the day and you just sit and do x-rays every 30 minutes until it goes through. He cannot eat prior or during this so another fun day, not! The surgeons are thinking that with the holiday next week, that they cannot look and address his rectum until the week after. This is basically like having surgery in a way. He is put out, with a breathing tube and it is done in the OR. It may e a 30 minute procedure but will end up being another half of a day spent due to waiting for your turn, and waiting for him to recover, etc. Every time we have one of these little looky lous, we always find out some piece of news that no one was expecting so I am just NOT looking forward to this at all. Some good news would be nice for a change. I am still waiting to hear his colon grew back! Oh, and somewhere in this week, he is supposed to have ANOTHER spinal tap. So that is TWO days of no food, or drink, and misery. Maybe they can do it all at the same time? Ugh, that is such a SICK thought. Of course, we would not want to miss one of those precious spinal taps!!! Maybe I can put that off too. I will get busy on that tomorrow too I think.
Well, after that we went to visit our favorite RN, Julie to give her the update in person. It is always nice to see old friends, especially when we are NOT staying. Walked the halls we saw for the first time last year today. I looked at our first room there and remembered what it was like when everything was so unfamiliar. Now I know this place like the back of my hand. I even know of the unknown areas where you are not supposed to be, but hey, no one was looking and we took lots of evening strolls in February. I am a firm believer in breaking the rules for a good cause!
Well, apparently Julie is going on vacation for three weeks! So maybe if we have to wait two, we can wait three because it is worth if to get a good RN.
We did get some good news today. Our insurance finally approved Samuel's air bags. Rather than 20 a month, we can now get 60. How nice of them! Of course, we are down to four, tomorrow is Friday and the supplier's choice for delivery is UPS. I will be calling them first thing in the morning.
Well, I am beyond tired so I will go to bed now. In my bed! Thanks so much for your continued prayers, notes and love.
Update 6/29/05
Well, we have been trying to work out Samuel's gut problem for a week now. Occasionally, for a fleeting moment, it seems like we make progress. I would swear that I just dumped out a piece of cheese, a large wad, from his air bag. The size of it would make you think things would be working better now. But now we are back to orange water. Carrot juice? From several days ago? He has not had cheese for over a week either. And earlier today we had a bag full of bubbles from a bubble bath. Water from the tub can seep into his tube, or even into his stoma. But his last bath was 24 hours prior to seeing the bubbles. Hmm, are we going forward or backward?
Samuel has spent the day being terribly grumpy. I don't blame him. Everything he would like to put in his mouth to eat, he cannot have. Mind you, he does not put much into his mouth especially if it resembles anything good for you. He will eat bananas willingly but other than that, it is mostly junk that he craves. But I wonder if he is trying to soothe some unknown pain, or upset of his tummy by eating. Like indigestion fools you into thinking you are hungry and you eat, and it gets worse. His attitude was rotten today and he refused to nap which only made it worse. A solution has to be found soon.
I got a lot done today and we made arrangements to drop Kaysha and Daniel off with Mark's parents so they don't have to suffer the long waits, and the horrible packed waiting room. And whatever else. Plus I wanted Mark to be able to talk to the surgeons too, rather than just watching kids. Or worse, trying to bring them all into a small room and expecting them to be quiet.
I guess I should take a small JIC bag tomorrow with the theory that if I pack, I won't have to stay. In fact, I never unpacked from the last stay so I guess I am ready now. July 3rd is our 11th anniversary of the day we met. We like that day better than the wedding anniversary. We have only ever been separated by tragedy. Tragedies like Delma's death where I went to CA for two weeks. And Samuel's hospitalization. Other than that, we have been inseparable. Anyway, unlike last year, I would like to be home this weekend. Samuel has not celebrated the 4th of July ever so this would be his first. Last year, he spent it comatose puking all over himself with a tube coming out of his brain draining CSF into a glass. I did laundry at the hospital and watched all the kids dragging their IV poles up to the 5th floor to peer out hoping to catch a glimpse of anything! I called Mark about every hour and listened as they all enjoyed the 4th.
Tonight, last year, was our last night at our former hospital. It is pretty bittersweet in recollection but at the time, quite scary. Samuel had so many problems that seemed insurmountable. I will never forget last year tonight, one of our favorite RN's Abbey, came down to my room to ask if "it" was true. "It" being us transferring. I think everyone felt that way. We were sad to be leaving our friends, the staff, and the hospitality shown us there. And scared because we had no clue what to expect. I had been told by someone at Children's that Anna could not stay at the bedside so we did not know what we would do. We knew we had to move to Seattle because Mark could never drive it every day. But we did not know what would happen upon arriving there.
I had had another Favorite RN, Karla, for the four days preceding our exit and was grateful for her being there. After Mark left for the night, I walked down for a quick trip through the rose garden. I remember looking at every one, and wishing to never go back into the hospital, but not wanting to be away from Samuel long and just saying some quick prayers and going back in.
Samuel was sleeping at the time and sleeping when I got back.
I had Karen as my RN for the late night shift. Karen was awesome. I rarely had to get up and reset the pumps that were beeping every two hours because she was on it. The first few times I had her as an RN, I thought she was not very nice because I never really talked to her. Then I realized that I never talked to her because she was in every two hours like clockwork and I was never woke up. And on the couple nights that I had her and Samuel had issues, she was excellent. She wished us well the morning we left and I shared the above with her and thanked her. I remember her commenting about Anna and how she could not believe I was still able to nurse a baby with all this going on.
Our Social Worker, Mary came in early to bring me a latte before Mark arrived. She was sad we were leaving. She had tried to contact the Social Workers at Children's but no one returned her call. I had tried to call Ronald McDonald House to arrange housing but was told we were out of the radius so we really had no clue what to do. Our Rn for the morning came in to arrange a time for the ambulance to pick us up for transport. Had Samuel not been on a morphine drip, we could have just driven him ourselves. I guess that in retrospect, it was a good thing we did not get that option because I don't know if I would have went to Children's or came home and said screw it all. Mark arrived shortly after Mary and several others came in to say their goodbyes. I gave Mary my cake that Mark had brought me from Costco. I could not eat it anyway so it was going to go to waste. It was a huge chocolate cake that the kids and I can massacre in less than a week's time and I wish I had some now. But then, I just could not even stand to look at it, lest take it out and eat it. There was no joy in anything. We pretty much invited all our friends, staff, whatever in for cake though so it was nice to have for that reason.
Something I will never forget was walking out of our room to talk to someone, and running into the little boy and his mom who had been neighbors to us several times. He was done with chemo. Done. And he was Samuel's age. Walking, talking, laughing. I got down to his level where I could see him really well and just wanted to hug him, and cry. It was all I could do not to. I looked at him and wanted so much to have Samuel back. I wished them well, and they wished us well.
The ambulance arrived and asked fifty million questions. They had to get ALL the medical history. They wanted Samuel's car seat for the trip. I told them that he could NOT sit. He could not stand. He could not hold his head up, lift a finger, talk, anything! He was not about to sit in his car seat which was a booster chair that sat upright. I just assumed they would strap him to the bed like they did when he came in before. But they wanted the car seat so Mark went out to get it. We must have spent 30 minutes propping it up enough that he would not fall out of it and it could be seatbelt properly in. We bolstered him in with blankets, pillows, and brought lots of puke towels. We left everything on the IV pole except the morphine. The TPN stayed behind. Samuel was frightened and cried out several times. When he cried, he could occasionally say mama and he did. I always wanted to pick him up when someone needed him moved just so I could hold him. He was always crying when we did this. After what seemed like hours, we finally were good to go. Mark took Anna to the car and met us in the ER drive through. Samuel and I rode in the ambulance and I watched Mark drive behind us for most of the way. Samuel was pretty calm and quiet the entire way. The ambulance RN was not particularly friendly so I pretty much just prayed the entire time. Prayed for favor like we had at our former hospital with the staff, etc. Prayed for Samuel to be made well here. Prayed that we were going to the RIGHT place this time. Prayed that we would figure out how we were going to do this, where would would stay, etc.
The trip to Seattle took an hour. We arrived at noon. I never saw anything on the ride there other than the cars behind us so I literally had no clue where I was. We went in through the ER but were told we had a room waiting. Mark was nowhere to be found. We went down a bunch of halls, through a maze of halls and elevators. We were on an elevator with lots of animals on the walls and I wondered if Samuel noticed them. We arrived at our room and were met by our RN, the charge RN and later an administrator whom I had spoken with on the phone weeks before. The room was nice and Samuel was given a real bed, not a crib. I liked that. The room was a single room but almost twice as big as the singles where we were before. Once again, it took forever to get Samuel out of all the straps and settled in. Everyone was very nice and helpful but kind of freaked out when they saw how much morphine Samuel was on. Mark arrived pretty shortly after we did and I asked him if he was lost yet. I was. Out our window there were animal statues and a balcony where you could actually go outside from the floor. Pretty cool! They said since Samuel was the only one in the room, that we could use the bathroom for ourselves, shower, etc. That was good because I had to GO! Nerves do that to you. I asked about Anna and the charge nurse said she could stay at the bedside as long as she had a bed of her own. A ha, Mark brought in the hammock, problem solved. So things seemed good and suddenly we were feeling very very hopeful and like things were going to be very different. Not long after that, a Neuro Surgery Resident came in to meet us and go over some of their plan. But he said he was going to take Samuel's chart and get up to speed on his history first. He came back a few hours later. Somewhere in that time, we also met the Onc Resident who also pretty much just got a brief history and left which was good since I wanted NOTHING to do with Oncology and was not very nice. This room had a bed which was a couch and then turned into a double bed, another bonus.
Neuro Surgery returned to tell us that they were planning to take Samuel to surgery that day and remove the VA shunt and do a ventriculostomy. Basically drain his brain into a bag. Maybe he did not even need a shunt? We were just an add on for the day so did not have much of a time frame for the surgery.
At some point in the afternoon, shortly after arriving, the phone rang. It was our former Onc. I answered and he asked, "is this Samuel's Mom?" I was absolutely livid. In three months time and most of it seeing him every day, he did not know my name??? I mentioned this to Mark who laughed and said that he knew HIS name. I think you would have to try pretty hard to not know my name in three months time. I tend to stand out, for several reasons. And on top of that, I always write my name, and kids names on the board where the RN's write theirs because I get sick of being called "mom". It is fine for some, but when you have had the same person for weeks, it is kind of nice if they know your name. I always make note of those who look at my name and call me by it especially if it is at our first meet.
Well, that conversation with the Onc was short lived. He just wanted to know what was going on, which also pissed me off. I guess he did not get the memo, he was fired. He had the audacity to show up to Children's that weekend and the following one, both on Sunday, to check up on us. I guess after the non welcome he got in our room both times, he figured it out. Either that, or our Onc had a talk with him. The first time he showed up, he was alone and looking over our chart and notes, and peeked in. The second weekend, he popped in when our current Onc was in the room. After the former one left, I asked our Onc who my oncologist was, him or the former. He said He was. I asked him if our former Onc needed to be fishing around our chart, etc, because we were NEVER going back to him. I also said that this needed to be made clear. He asked me if I wanted him to do this. I did not say yes plainly but he got the drift of my dislike. That was the end of the visits from him.
Moving to Seattle also ended our ability to update the website. Something happened to our computer at home and it would not allow any publishing to be done. So if you were not on the list, you saw nothing. Occasionally I would get e-mails wanting an update while were were there. Mark did not know what to do with the software and it was just something that had to wait until I cam home. We did not have a laptop like we do these days thanks to Sara.
And our poor Onc, he got an earful when we met him too. He knew exactly what he was getting into because I pretty much told him I was done with Oncology. Funny how the more things change, the more they stay the same. When we went to Seattle, it was no holes barred. I hated Oncologist's and I told him so. We talked about him taking on Samuel and how now this was "his turn" and I told him to try not to screw things up. At one meeting we had with our Onc recently, I brought up our first encounter and reminded him how closed and opposed I was to Oncology as a whole and how much we literally put Samuel's life into his hands at that time. He said he definitely knew where I was coming from at that time. It is just funny to think back. He did not come in on the first day we were there but rather the third. He met Mark and I was not there so missed out on that day. He arranged to have a meeting with all of us and his "team" the following day. The second day we were there, we met the head of Oncology who told me he was friends with our former Onc and did their fellowship together......WRONG thing to say! Good thing that was his last day and our Onc came on. Social Worker Fred said that our Onc had the best reputation with families because he is an excellent communicator. And he is. And he did win my confidence, for the most part on the day we met. But we started out with a very frank and honest conversation and have never changed since then. I will give him this, he can stand in the middle of a fire and take it, because I have certainly given him a lot to think about on several occasions. Monika constantly reminds me that he is the "good" guy and we don't want to lose him. We don't. Of all the ones we have met, he is the best, bar none. Every time I see the hag we had inpatient back in February who liked the fighting matches, I want to trip her..... She sees me and walks the other way.
Samuel went to surgery on the first day we arrived at 6pm and returned at 9pm. Prior to that, they did another CT scan and said, that yes, his ventricles were huge. When he came back, it was with the tube going out of the top of his head into a jar. They had to come in and adjust the pressure perfectly so it did not dump too much or too little. And he could not be moved without someone coming in to adjust the levels. So if he was laying flat and started puking, I could not sit him up, he just puked all over himself until someone arrived to help. It was ridiculous. And it was like that for two weeks.
While Samuel was in surgery, we called some hotels and apts to get quotes. The hospital had a sheet with estimates but they were all about $50.00 off. Everything cost a fortune. Mark stayed the night at the hospital with me that night. It was nice to sleep together even if it had to be there. Nights were often awful so having company was nice. The next day was a barrage of people again. The dietician, whom I now cannot stand, came in to tell us that he had hepatitis, most likely from TPN. They stopped TPN the day before and never ordered it so Samuel went over 24 hours without it. Here they always said you cannot just go off it and then that is exactly what they did. Samuel was probably starving, but he could not talk so no one knew it. It made me sad. But now they wanted him off TPN, but of course,he was puking up every feed because his tummy did not know how to work anymore. It took a couple weeks to get that all figured out as well and we went home with hepatitis. A few weeks of my special food concoctions and that was all taken care of though!
The OT and Speech Therapist came in to evaluate Samuel. The Ot told me that she had never NEVER seen a kid come in in that bad of shape. When you go through the whole spiel of how he was a normal typical two year old until THIS. And now see him comatose. He cannot even hold a penny. She told me to NEVER go back to where we came from. We run into her frequently these days in our roaming's and she is always tickled to see Samuel. To her, he is a miracle.
The second day we were there, we met Social Worker Fred and explained our situation. How we had already been displaced for two months, and how I could not see to drive so was stranded, etc, etc. How we did not know if we would EVER go home. Would RMD house make an exception? He was really nice, and said he would call. Well, they still said no. We needed to be 60 or more miles away and according to Mapquest we were only 52. Then he mentioned something about our insurance and called them. Well, somehow he managed to get them to pay for us to stay in a hotel a mile away where shuttle services were available and I could get to and fro. They booked it for two weeks. We were thrilled and amazed. Everything that I had prayed for on the way in the ambulance, was just falling into place. And as we were there longer, people became more familliar, friendlier and hope returned. Samuel started getting slowly off the morphine, was able to eat more, via NG. He started to move his fingers and hold toys that the therapists brought in.
Mark was taking an afternoon turn there while the kids and I were at the hotel and a volunteer came in with toys to see if he wanted to take a break. I asked him if he explained to her that Samuel does not play with toys. I guess he forgot. When I came back after an hour or so to relieve her, she was just sitting on the couch with the toys and he was watching the door. Days like that were sad because it was so gut wrenching to explain to people that he does not do anything.
It is just so ironic that we are headed in there tomorrow to discuss the same things we were discussing last year, to a degree. More surgery. More open ended hospital stays. I will be so happy to return home tomorrow. I thank God for the many answers to prayer and that today, my needs are met so that I can go, it that is necessary, and stay again, while we work this all out.
Much love, many thanks for your continued prayers and hanging in there with us.
Update 6/28/05
Still the same story here, maybe marginally better but still obvious that there is a problem. Samuel got us up with a ruptured air bag at 6am. That is such a cruel way to wake up. Still bile. Definitely not normal. Neither of us wanted to "waste" the day by going into the hospital and either spending the entire day there to find out nothing, or worse, having them want to admit him because nothing has changed. If we were not going in Thursday anyway, things would be a whole lot different. There is nothing worse than getting stuck at the hospital for a lot longer than you were expecting and at this point, I am in "get everything done just in case..." mode. I don't know what they will say on Thursday but if they really want to admit him then, I don't want a lot of things left undone here. I hate winding up there and thinking of the few things I did not do, or trying to tell Mark what to do over the phone, that sucks too. So I have roughly a day and a half to get everything done. We are both of the opinion that no one will know anything until the open him up again. Best case scenario at this point is that it is his closed rectum disrupting his gut and opening it back up will resolve this. If we stay, I will be ready, and if we come home, I will have gotten a lot done.
Thankfully, Samuel remains feeling fine and had a nice day playing. That, at least is the saving grace and I am so thankful for that.
In the last few days I have received several wonderful notes, and people letting me know they are praying, etc. This always means more than you know because there are some days when I am so busy that I forget to pray. It is comforting knowing that we are covered in prayer by you. It is my bedtime and I am really tired all of a sudden but I wanted to share a quick note I received tonight.
I believe that your family and Samuel have touched millions of lives, and that really is what it's all about, isn't it? I hope for Samuel to have a long happy life so that he can continue to amaze us all--but please know that your struggle is touching others and though it seems unfair that it's you who has to do that, you are making a difference.
I cannot explain to you why, but that is comforting. Knowing some good continues to come out of this comforts my soul. I was invited to read some messages tonight written about myself from people who want to help our family and it is truly overwhelming to know how many people are out there reading, praying, loving us, even though they have never met us, and most likely will never meet us. Thank you never seems to cover what is in my heart so please know that we send our love right back to you. We could not have gotten where we are today without the kindness and love of complete strangers. It is my hope and prayer that Samuel spend his whole life reminding us that miracles do happen for those who believe, but hope that this does not mean that he has to continue to be plagued with problems to prove it. Love knows no boundaries when it comes to a child. Thank you so much for caring for us.
Update 6/27/05
Well things are not better and are not any worse. We decided to hang around the house today because after watching Samuel run around the house like a "nutty" I know there is no way I want to confine him to a bed. It would be nice if it were easier to get in and get the help you need quickly rather than trying to jump through all the hoops. Again today we discussed if going through our Onc would be faster than the ER. Surgery clinic is only run on Thursdays and we already have an appt then. Other than that, as we found out previously, it is easier to get the attention you need being inpatient and even that is not fast. Tonight he has green bile coming out the stoma which is a step up from diarrhea and rancid watery chunks so maybe we might be getting somewhere??? Samuel has gotten so much soup stock in the last few days that I have so heavily salted that he has hardly asked for his usual salty foods such as chips and cheese. So, I guess I learned how to solve that problem at least.
We talked tonight about going in through Oncology tomorrow if things are still similar to today and at least then we can get an x-ray to compare to quickly and get another surgical opinion in possibly a matter of a few hours instead of the ten ER takes. We are growing more suspicious of his rectal area contributing to the issues and opening it up may solve some things...or may not. The last time they did this it was under anesthesia with the breathing tube, etc so it may need to be another scheduled thing. After talking about our appt with surgery Thursday at 2pm, we decided that late afternoon was not a great time to get all this accomplished so maybe tomorrow is better. Oh, how I wish it would ALL GO AWAY!!!!!!!!!!!
The surgeon at our former hospital who did the original ileostomy mentioned something about part of his colon growing back when he was trying to give us some hope for the future. And like a dummy, I have had this thought in the back of my mind for the last year secretly hoping that when they opened him up to reconnect this gut, they would find this miracle. Well, the last time they opened him up, we did not. But like a dummy.....you guessed it!
If it seems like you have read the same thing for the last few days, you should try living it. Too many questions, no answers. Jury is still in deliberation and only because we KNOW that the hospital system we are a part of fails us 9 out of 10 times. I hate to even get Oncology involved for fear of what happened the last time we were admitted under them for a surgical thing. And I am afraid that opening him up again is the only way to KNOW for sure what is up. I am not looking forward to that at all. So I guess if I can put that thought off for a few more days, I would like to. So the prayer remains that his gut improve significantly by tomorrow. Else, we probably have no choice but to get it checked out again knowing that they could very well see NOTHING. Or worse, see no improvement and want him to come in to stay awhile. UGH!
All I have thought of is how nice it would be to get the home/land we have been dreaming of, take a year off from work and hospitals just to enjoy life with not a care in the world other than what color to paint the house, how to decorate the kids's rooms, what my horse is getting into now, what kind of garden we want to have, feeding Samuel's ducks that I hope he one day has, etc, etc. Dreaming, I know. Someone reminded me that my reward is in heaven. Ain't that the truth, we all know that the dream of this paragraph would never happen here on earth.
Thanks so much for your continued concern and prayers. Much love!
Update 6/26/05
Well, a few steps forward, and it is all lies. We are about in the same place we started in again. Last night, I thought we had really started getting somewhere when I checked his bag one minute and it was empty, and the next and it was full of chunks. Seemed a very promising sign. I ran clears all night and basically emptied the bag several times because of diarrhea. So once again we tried the kefir juice combo and again, got chunks, but nothing substantial. I smelled Samuel's breath and it smells exactly like what is coming out his bag so everything is just running straight through undigested. We are banging our heads trying to figure out how to proceed at this point. We wonder if his closed up rectal area is contributing to this by adding pressure points. He is still not complaining of pain, but he has lost a lot of fluid today as well. It is being replaced and today we hit another 1200cc's of fluid in but most of it came out as diarrhea. Not good. I would lay money that we have a twist, a kink of some sort that lets liquid through slowly but won't allow the gut to work normally. I don't even want to think about what that means for the future. Especially if this has to be addressed prior to surgery to hook him up. What if this needs a surgical fix? Is that two surgeries then? One to fix it and another down the road to hook it up? I feel sick at the thought. Do we go in tomorrow? To the ER, to the Onc Clinic which might be faster to get to see surgery again? Or do we just wait it out until Thursday when we have an appt with our surgeon and just address it all then? He is not emergent at this point and I don't think I have to mention I don't want to go live there until I absolutely have to. But at the same time, it would be nice to get this resolved, I am just afraid it is not going to be that clear cut since we are having little luck here.
It is really frustrating, I might as well beat my head against the wall because it would be doing SOMETHING. Right now, we can do nothing but wait. Or we can go in and wait, but there it is not as comfortable as home and I don't know what we will do with A.D. Mark says she is going with us and I say no. I can't do them both. She is too old. Our last hospital stay she refused to drink my milk from a bottle and a cup. So it won't be fun either way. I guess we will play it by ear again tonight and decide tomorrow. Of course, if the hospital were even half the distance, it would be an easier choice. I feel like I was JUST there and after our last visit, don't want to return ever.
I was overwhelmed by the thought of how this will all play out over the next months, and years. How careful Samuel will need to be with foods as he grows up. How fun that is going to be with a child. How we are very lucky that we feed him the way we do. very lucky to have a feeding tube. If we did the usual formula crap that is offered, his gut would be in knots all the time. Most of his food is partially digested or loaded with enzymes so that his body has to do very little of the work. So he probably gets at least some nutritional benefit even with diarrhea because all his gut has to do is absorb some of it. How does this all work out when his gut is hooked up? He is going to be so shocked when there is no more air bag and poop comes out the normal way. Are we talking about 12 diapers a day? 15, 20? I guess it depends on the diarrhea factor. Will he just potty train? To date, he is my latest child to train. Daniel was trained well before three and was easier than Kaysha to train. Kaysha was nearly three as well. One day at a time I guess.
Life feels like it is in fast forward all the time. I stop at the end of the day and think of all the things I forgot to do. If I could just remember to make a list in the mornings....yeah right! I want off this train before it derails. That is what it feels like some days. Ever feel like you have worked really hard for something and it was all in vain? Absolute total frustration. Set goals, get excited about something and then some stupid thing rips it all our of your grasp. Why do I feel like we are headed down this road?
Please continue to pray for Samuel. He needs a break. We all do. Pray that we will know what to do in the next day or so. Much love.
Update 6/25/05
First off, thanks to everyone who took the time to send me a note of encouragement, sign the guestbook, or call. Thanks so very much for your prayers for Samuel.
Today, Samuel is marginally better. We started to see some undigested food chunks start coming out last night. This is a good sign and something I look for well before the 36 hour mark of running clears. In fact, I stopped the clears and switched to a combo that Samuel can be so glad he doesn't have to eat. Celery, Apple Kefir with Papaya enzyme and Olive Oil. A sick sounding combo but something in it worked because we actually got a response. This morning, he is back to more watery less chunky so I repeated it and again, got more chunks. He is currently sleeping and his air bag has sprung a leak. So when he wakes, he will not be happy. His G-tube has been open a few times today and no excess drainage. And it is not just leaking even when it is closed like it did yesterday. So these are good signs. However, in the last day, I have pumped over 1400cc's of liquid, almost twice the normal liquid and haven't seen near enough output. Usually we go from watery output with lots of gas, to undigested food, to normal so I hope that it changes over in the next day or so. What I think is that there is a twist in his gut that has probably been there since the start of the last major chemo, now over a month ago and they just got lucky and say excess stool lingering there yesterday. I think this because in the last month, it seems to get better, and then gets worse. It would not even surprise me if they find this in surgery. So I guess we are still in watch and wait mode. I am having a hard time getting motivated to do anything! Literally forcing myself to do the bare minimum. My Mom was going to come over and watch all of the kids so Mark and I could go out to dinner alone tonight. But I put her off since I don't like leaving Samuel if things are not okay. She offered for tomorrow so we shall see. It would be the first time we got to go out along in several years. So I guess we shall see on that.
Samuel feels fine although slightly grumpy. He has actually been pretty grumpy since the start of the last phase of chemo so it may well have to do with his gut not feeling right. We are still in disbelief that his anus is closed again. It could have happened during this last chemo too since it affects your gut lining. We always forget this area since it doesn't currently work. Thankfully, it is not a problem once he is hooked up and using it again, but still, now it needs to be addressed and opened up again.
Other than that, nothing has changed. I am still really tired today. It usually takes a day to get back into the swing of things after going to the clinic. Hopefully tomorrow will be a better day. Much love.
Update 6/24/05
Samuel's Counts
WBC 7k
ANC 3500
PLT 712K
HCT 35.4
As you see, all counts have recovered nicely. I would like to say what a nice clinic visit we had, but it was awful. In fact, I am trying not to allow the defeated feeling overwhelm me tonight as I prepare to have a semi meltdown. It has been a long week, a long month, a long year, so much more than that and it is hard to hold onto any shred of normalcy because something always seems to pop the balloon. As if ruining the day by going to clinic for chemo isn't enough, Samuel again has an intestinal blockage. I suspected it yesterday and switched him to clears but no such luck resolving it today. And again, perfect timing for a day when he cannot have anything to eat before sedation. So it was a miserable trip in with his G-Tube leaking and by the time we arrived, the skin was so broke down around it, it was bleeding all over. He was very very upset. He was beyond consolation for every procedure and screamed so loudly that several times it was all I could do to force myself to force him to submit. Several times I told Mark, "Let's just go." And still we stayed. We saw our Onc who usually looks at the G-Tube site and marvels at how good it looks. Today he immediately called Surgery when I explained to him that we have another blockage and it has never completely resolved from the start of chemo now over a month ago. Surgery sent a Resident who was very nice but hard to converse with because of Samuel's screaming. It was decided to do another set of X-rays even though we all agreed that they show nothing. We went down for that but had already been there for several hours just trying to get the normal stuff done. We arrived at 9:30am and did not get to X-ray until noon. Then we had our sedation appt for his spinal tap at 12:30pm but apparently our Onc put that on hold until talking to the Surgery team. As it turns out, the x-ray does show a partial blockage. I about hit the floor in surprise. The Junior Fellow, Tracy, who knows us well, gave us the option of having him admitted for IV and clear fluid hydration, or we could continue the path we have chosen and do the clears at home and give it another 24-48 hours to resolve before coming back. Obviously I don't want to be there if we can do things here. He finally was okayed for his spinal poison and we ended up leaving about 2pm. Well, after arriving home at 3:30pm. we realized that his anus seems to be closed again. I don't remember the usual mucus draining for a few weeks and we tried to open the hole back up but not only was it painful, but we hit resistance. So now they will have to fix that again and hopefully the mucus buildup is not contributing to the blockages too. I will see how the night and day tomorrow go and then call them if needed. I do not want to go in there! And even worse, this may delay his surgery to hook up his gut if it doesn't resolve on it's own. I am very troubled that an X-ray showed something when the last time nothing they offered for diagnostic tools showed a thing. I really think that they will be unkinking something surgically that we are just not seeing.
So, I could possibly be going to stay there sooner than expected if this doesn't work itself loose. We all looked at the pictures and you can definitely see stuff stuck. Besides being miserable from a long crappy day, Samuel has not complained of pain and I am thankful for that. But I am just so so SO annoyed with Oncology who just think we will get him hooked up and it will all be over. Things could be FAR from that. Things could actually get worse because of the joint that will be made between the stoma and the rectal pouch. I don't think our Onc was too impressed when I let him know I never started oral chemo last week and don't intend to until this is resolved.
I think I need some quality sleep. Today was an early day and me, who is NOT a morning person, I have been getting up at 5am and not going to bed until late. There is so much to do and trying to plan for being gone at least a week, possibly more and now possibly being gone sooner than expected, it is just too much to fathom. And then thinking that this is Samuel's life for the rest of it. This is our life and there is very little we can do about it because we cannot predict if or when he will have a gut problem. How long it will last, how many more surgeries he will need to "fix" something. It is all so unfair. I am so tired of him being put through miserable things. I think that the Surgery Fellow, Tracy took pity on me as she hugged me before heading to talk to our Onc.
Please pray for Samuel's gut to get whatever is stuck in it out. Either by puking or pooping, I don't really care which. Thank you so much for checking in on Samuel. Much love!
