9/8/06
So much to say....don't know where to even begin. I am thankful we took the trip to the beach. It was glorious! Truly. We stayed at a wonderful resort in which our room had two back separate bedrooms and a sico bed in the living room which was next to the gas fireplace and view of the sea. A kitchenette was also in the room and it felt very homey. The beds were just as nice as ours and on the first night I woke up thinking I was in my own bed....and then I realized I wasn't. So it was even better.
The hotel in Portland was a nice value, right up until we went to bed, and the beds were like sleeping on folded up towels....awful! So no one slept well. That and we were all in one large room so it wasn't homey. We weren't there long enough to really care mind you, but on the next trip we will hopefully find a hotel with better beds because no one should have to spend a long day at the hospital with little to no sleep. The pool was wonderful though, and empty so we had a blast.
We had a wonderful drive down and even detoured to Mt. St. Helens to help pass some time as we could not check into Portland until 3pm and we left here at 11am because no one could wait. We checked into the hotel and then hit the pool, changed and went out to get dinner and also to find the hospital. Great plan because it was in a maze on a hill, and I thought Seattle's location was bad. We used Mapquest and got the most ridiculous directions and found our own better way on the way back. OHSU's hospital makes Children's look small, but it is also a university so there are just buildings sticking out of the side of a hill everywhere and they are still building. Large pavilions at every angle and tons of skybridges to link them all. It was nice, pretty even and the people were friendly enough. I realized that my real hope in all this is that once Samuel's surgery is done, we can be done with hospitals too. Trading one for another for another is really tiresome. Telling this story over and over is boring me. I just want us to be able to move on.
Since we were new to them, I was asked some pretty dumb questions. Once all the doctors, residents, etc came to meet us, they went over the medical history and apparently all the records I sent were not included in the chart so I had to go over everything. Then the dumb questions began. The anesthesiologist looked at Samuel's new medical bracelet in which I had inscribed that he has no colon. He asked me, "He has no colon? Was it removed surgically?" Hmm. I guess he could have been born without one, but I think it would be very rare. One of the residents asked about his leukemia and how we were controlling it and if he had had any treatment....I told her he was done with treatment and if they wanted to know who was controlling it, then look up. So she did, right at the ceiling. Not sure if she ever got it. This same one asked another resident what typhlitis was and he told her it was when the colon got too big and I told them both that it was inflammation of the cecum which led to perforation, the colon was just collateral damage. None of them could believe that he did not need any "happy medicine" as they call versed, to be able to go back with the doctors. I was asked several times if he would just go back and be fine. later the surgeon told me he was just back there joking around and having a great time. We did not come by this without paying our dues, I sent him back crying many many times in fear, and me too for that matter. This is much easier for all of us. I know he appreciates understanding what is happening instead of being drugged senseless. Plus he comes back to me happy to see me instead of livid.
The drive to the ocean from Portland was not quite as pleasant as the drive down because Samuel was sore. He did test out his new pot several times on the drive and it was so wonderful to have that option for him. Even Daniel tested it out and the rest of us were just ROFL because of all his sound effects. I almost wet MY pants laughing. Oh the things that make it memorable. Samuel had to be sure to tell Daniel how it all worked back there too.
I realized that I love the ocean because it is loud enough to drown out the sounds of all my kids just being loud kids, so they are not offensive to others. They could yell, scream, and let out their joy and no one looked at them like they were too loud or crazy. The views were gorgeous and there was always a "duck" waiting for Samuel, either on our balcony or at the beach. The sunsets were gorgeous and I just took tons of pictures and video. The sky was always changing and literally every sunset picture I took was different even though they were only minutes apart. We had a wonderful whole day at the beach playing in the sand, exploring, playing chicken with the tides, building fires, roasting marshmallows, feeding the birds. We had our own little spot that felt like it was really ours, if only for a little while. The kids were free to roam and behaved pretty well considering everything. Call it all Joy, because it was. I took lots of pics and videos with the thought in the back of my mind that you never know what tomorrow will bring. Moments when everyone is happy and Samuel feels well are priceless around here. When you are together and everyone feels great, nothing else really matters.
The Backus Bus was the difference for everything. I realized how much time I spend at home since I do not drive and it is usually not worth the misery for Samuel to go anywhere as a family. We were truly free. We planned well, packed perfectly and thought of everything before we left. We had tons of room for everything we wanted and more. Kaysha and Daniel played their gameboys most of the rides between locations. They also picked out books to read and spent some time doing that as well. The babies watched DVD's on the laptop and so there was minimal fighting. Our luxury was bringing the espresso maker along and having great coffee anytime we wanted it without the hassle of trying to find it. I would have liked to spend one more full day at the beach but the full day we had was near perfect. We spent some real quality time as a family without the cares of what needs to be done in our house or how many pouches I need to make. I could have sat on the beach with that fire for days and been in heaven...so could Daniel I think. Samuel still has a ways to go, but I think he will get there too.
As with everything out of the ordinary we do, I try to memorize every second. I realize over and over why Mark is my best friend on this earth and how blessed our family is even in the midst of this mess. You remove all the things in our lives for one day that cause stress, pain and suffering and give us some freedom and we will enjoy it and each other. Give me some good coffee, my family and a beach full of beauty that even a blind person sees and I am happy. Samuel felt great on the last two days of the trip and I will be thankful always for that. Slimy went along to Oregon, but he never got out.
Anna slept a lot better on this trip than on the last one when we went to the Rainforest. She and Kaysha are quite close so as long as Kaysha was with her, she did fine. Daniel was not too impressed that he had to sleep with Samuel but soon got over it. Samuel can sleep anywhere, he doesn't care in the least. One of the better things to come out of multiple hospital stays I guess. I feel a lot better and came back refreshed. We are resolved to the three month wait and it is obvious we have no other choice.
The drive home was nice as well. We took the coast hiway home, so added probably an extra half hour to the drive but it was nice to go a new direction instead of on a road we had already traveled.
Probably the only downside to the trip was eating. It is hard to eat the way we do here while on the road. We packed food for breakfasts and snacks but other than that, we ate out. Most of the choices suck when you have little kids who forget how to behave in restaurants. Anna is really the only one who cannot sit well. Samuel could play with toys in a chair and never move for hours since he has spent so much time doing it. She, however, is like a jack in the box. The kids had a great time, were happy to go but I also think were also happy to come home where they can be themselves and have more freedom to roam.
So, back to reality, in my mail was the notice for the hearing with Medicaid. It is scheduled for Oct 23. Right at the time when Samuel will need the next dilation. And they have 30-60 days to make a decision. So I guess it was good that we came to the realization that this is all out of our hands so other than remarking to each other about how stupid this system was, pretty much it is a non-issue. We will have his surgery done in December before they probably even make a decision. Worse than that, he will need a dilation at the time of the hearing anyway which would get us to December. I am sure they did not "plan" it that way, but interesting and sad the way things work here.
And then today, Medicaid called me to LMK that he just had a teleconference with Seattle and Portland surgeons. He said he was told Samuel was an excellent candidate for the anoplasty and that Dr. Levitt was still planning to do it...all things I already know. Not too much was said about Seattle, I think he might have read that part of my letter because for this phone call, he did not seem all that impressed with Seattle. I am sure our surgeon there is getting really tired of phone calls about Samuel. He also indicated to me that he "just" realized that Samuel could not finish his chemo because of all these complications. So maybe he actually read the chart, or one of the surgeons indicated this on the phone since everyone seems to love bringing it up. They probably noticed his bracelet says "NO chemotherapy." I asked him how it was possible for a child to get chemo when they cannot eliminate properly, that would seem pretty important. He asked about our Onc here, just to see if anyone is following that. Still hasn't read the file. He is going to have OHSU make a list of pediatricians that are trusted in WA, note he did NOT ask Seattle to do this and send me a list. I also indicated that we had a doctor whom we liked but then they dropped Medicaid from their list . If we were established now, we could go back, but since it has been a few years, we might not be able to. So he is going to call her and ask if she wants to take us and feels competent to do so after all this other.... I will be sending him her name and number and also reminding him to READ THE RECORDS so he is competent to find us a doctor. And again, this guy is nice, it is hard to be rude to someone who is nice and calls you on his cell phone on the way home. But still, not being able to get to Cincy now is costing Samuel his quality of life for another three months. He also knew about the hearing date and said he was fine with that and I let him know that we would just cancel it and explained AGAIN about the timing of it, and the timing of the decision. Not to mention the fact that the attorneys here told me we have not a leg to stand on, didn't mention that though. So whatever, he seems to want to do the right thing as far as finding us help here goes and also conferencing with the surgeons yet another time before the surgery to be sure everyone is on the same page, but obviously still has NO concept of what Samuel has lived and probably will never have the time to do so. If he did, he would understand our reasoning for NOT wanting to wait. I pray that he someday see the error in judgement in not allowing us to get Samuel help immediately and I pray that he might listen to another parent if someone else be in a situation like ours that they not have to suffer it out. I pray that one day Samuel will be blessed in abundance for all his suffering and I hope it is on this earth AND in heaven.
And finally, today Samuel has been pooping up a storm. So much that he is a little raw. But he is in underwear and I can see how as Dr. Levitt said, once his butt is fixed, with a little imodium daily for awhile, we could combat that. It would be fine because poop could get out once it reached the hole. It is so obvious how much bigger his anus is. I can see it, and that is saying something. Also he is not picking his butt open to poop, which is nice. No, now he is scratching it because it is trying to heal. He has been able to eat some things he hasn't been able to in a long time. So that is nice to see. Really, it makes me wonder if at our previous dilation in Seattle, anything was even dilated at all. We got no relief, instead seemed to get worse. This time, it is so much better. So living in the moment, because in this situation, that is all you can really do, we will enjoy it and so will he. We know it probably won't last but we also know he was opened up pretty big so we should have a few weeks of decent. And the next three months are jam packed with stuff. Tomorrow is Daniel's 8th birthday. Then comes Kaysha's just in time for our next trip to Oregon. Then there is Halloween, a much enjoyed treat around here. Then Mark's birthday, several of his family members birthdays, Thanksgiving and then the surgery day. Lord, I hope that Christmas will be good this year. I pray that Samuel feel great, and healed, finally! Last New Year's Eve I wrote....
As we head into the new year I find myself looking forward, not back. While we have a lot to be thankful for, and many happy memories from this past year, the majority of it has sucked and I will be most thankful to never revisit it. As the year comes to a close, I feel such a great appreciation to my own family within the walls of my home. It has never been more obvious than this year that everything my heart desires is right here around me, fulfilled by this family. Not by "things." I look forward to next year and feel in my spirit that it will be a year of restoration and joy for us. Last year did not feel like a new year to us, but rather the continuation of a really bad year. Now, I feel a sense of renewal and joy that we are not in limbo, our hard decisions have been made. The surgical whirlwind is over. Our lives are in OUR hands and more importantly, God's hands, not the hands of someone else I don't trust. I have already begun making plans for the new year by doing some cleaning out and packing up. My intent is to move away from here, away from the bad memories, away from a place way too small for us. Move to a place where our children can run as free as their spirits do. I am making plans to leave, and let me tell you, everyone knows it. It is time. I could sit here all year and wait for the other shoe to drop, but I refuse. I am all about letting all these children live their lives to the fullest each day. I am tired of looking back and being haunted by the past though I wonder if some part of me always will be. I am so trying to shed that skin and move forward, onward and upward.
Samuel's poor butt continues to plague him but he IS pooping less. So major bonus there. I don't make resolutions for new years but I do really pray that both these babies start pooping in the toilet very soon because I am SO SICK of poop.
I read that and it really feels like I could copy and paste it to the ending journals for this year because I feel a lot of the same things So much of it can be said for this year as last year and the even worse year before that. It is time for a change. I felt God's promise of Restoration, just did not think I would have to wait another whole year for it. Please, Lord, let this be the last thing. I feel Restoration of our freedom to travel already. I am so thankful for the Backus Bus. I am thankful we splurged and took our little trip. I am thankful for the refreshing in my spirit. I am thankful to have been blessed with a family that is perfect for me. I am thankful that we have a God who takes care of us and blesses us, and keeps us safe. May we all rely on Him more and worldly people less. I thank you all for your prayers for us , our trip, our safety, and for Samuel, always. I know that Samuel feeling well was because of your prayers. I know that "I" feel better because of your prayers. Thank you for your encouragement, notes, prayers, love and to the many friends I have all over the world. We could not have gotten this far without each and every one of you. Much love.
9/6/06
9/5/06
I threw some pics up tonight so I hope you enjoy them. Things have gone well, or as well as we expected.
In the words of the surgeon today, "This is an easily solvable problem, with a straight forward solution, I don't understand why no one has fixed this." If that doesn't say it all, I don't know what will. He is going to call our surgeon in Seattle to find out why he let us go on and on with this nagging issue.
So while Samuel;s pooping had significantly improved and things seemed a lot better, in fact they were a lot better, his anus was down to a size 7 again and his rectum was also considered narrowed and was also opened back up. He was opened to a size 19 which is the largest yet and they did clean out a bunch of poop which only released once they got him to this size. It is so sickening. So, needless to say, he is sore and bleeding off and on tonight. It hurts to sit down or walk at times and his butt just seems to be oozing again. Annoying how just messing with the anus screws up his whole gut. I think Dr. Levitt is right on saying once they fix the anus the rest will fix itself because they definitely seem to work hand in hand. Dealing with Oregon's OR was very similar to Seattle in length of time getting in and out. Everyone was nice enough and the anesthesiologist did what I asked as far as using propofol only so Samuel came out fairly happy considering. They also made us a follow up appt for two weeks from now but I think we will cancel it unless something happens between now and then. I was also told very straight forward that they are flying Levitt in to do Samuel's surgery and when we need another dilation to call a week in advance and they will get us in.
The Backus Bus has been a gift from God and it truly equals freedom. It has been almost heavenly when certain babies weren't fighting anyway, LOL. We will be happy to be able to stay put here a day before heading home Thursday though. Lots of traveling in two days time with people who are used to being solely home. At certain times, I felt Delma's presence, like she was walking beside me. Maybe because I was remembering times when she WAS with me in these places we stopped, or maybe because I wished she was with us to enjoy the kids. My goal is to have a marriage like hers and raise a family she would be proud of. It was a compliment to me to have the car salesman comment to us that it was obvious that we were a close family so I think we are on the right track there.
More to say but typing and seeing on the laptop is difficult for me so more fill in the blanks when we get home. Know that we are all doing well and ready for a day of adventure. Please pray that Samuel rest well and heal enough to be able to walk and enjoy the day tomorrow. Much love.
9/3/06
Well, Samuel has had another awesome day with nothing less than beautiful poop. I think Slimy might have actually cleaned everything out because he only pooped twice today and his skin looks pretty great other than the scar tissue, but the blisters have healed quite a bit. Of course he is excited to go to the beach, but also to the hospital. You know he just LOVES the hospital. I know not why! I have tried not to allow this to happen, and maybe it is the little trip to the beach that is causing it, but I just have so many hopes for this trip to a new hospital. I guess if you could pray anything about this, it would be that they are helpful. If we have to wait this out another three months, maybe they will have some ideas or be able to find something that has been missed before. Maybe Slimy finally got the old stuff loose, but we are all afraid to feed him much to test it. It is easy to feel up and positive and hopeful when Samuel is doing well and we have had two wonderful days. I will take all we can get and continue to trust God to do what no man here has been able to.
The Backus Bus is pretty personalized for our family. All the comforts of home you would want if you have to "live" in a vehicle with a boy that has as many needs as Samuel. I am packing one bag just with medical supplies. His food pump and accessories for feeding him, and yes, Slimy is coming along but we hope to NOT have to go there. His rainbow array of pain relief med's and other supplements he gets separately from his food. A gallon of his "formula" and some of our lovely stock for the night before anesthesia and right after if his tummy feels sick. An extra tummy tube in case he goes wild and rips out the one we just replaced a few weeks back. Some cloth diapers JIC but I think if things continue like this, he can switch back to underwear. I hope. We have been pretty much back in cloth for quite awhile. Thankfully he doesn't pee in them anymore so he can go coverless and it is almost easier than undies in that you can get them off fast if you need to. All the kids played in the Bus most of the day and we definitely did some driving around. It was SO nice. I cannot tell you how lovely it is to run to four different places, be gone three hours and have more than enough room to haul everyone and everything. And the emergency pot for Pooper is just a nice touch and makes me feel like we can get out and live again, or at least leave the house for more than an hour.
Thanks for your prayers, well wishes and excitement for our family. It seems like it has been so long since we have had anything to be excited about. Daniel and Kaysha won't sleep tonight I am sure. They are so excited! Samuel had to go to bed early because he refused to nap. Anna isn't aware but she sure loves the bus. Okay, we all love the bus! I will update from Oregon tomorrow night sometime. Much love.
9/2/06
Just a quick update, you can see what we did today by the pictures above. Finally, we were able to do something about our too small vehicle which I loved when we got it but hated after spending SO MUCH time in it with kids screaming, pooping, puking and fighting for all those long drives to Seattle and back. Not even unhappy to see that thing go. We did a little looking yesterday with everyone along but went back to buy today with just Samuel who was a little angel. He just loves pretending he is the only child. I think we got a wonderful deal and treatment because of Samuel and our situation so I am thankful for that. We are very happy tonight knowing that our lives will be so much more improved by this purchase. Trying to squeeze into the Mountaineer has just been hideous and if any luggage needed to go along, then some kids could not go. Now, that is just not a problem. And sweet little Pooper can just go poop anytime he needs to.
And for as awful as things were yesterday, it was 100% different here today. In four hours time yesterday, we stopped for him to poop three times. He went four times total today, all "beautiful poop." Yes, there is such a thing. He did not have to go the entire time we were gone and just felt great. So I guess Slimy was a success and we have certainly never had such a great immediate response from an enema before. As I said, it was hand mixed.
Samuel's biggest concern now is that Slimy might go on vacation with us and he thinks Slimy needs to stay home. He is very very excited and I swear if Daniel asks me one more time when we are leaving he might not make it. Tomorrow we finish getting things done here and last minute trip details, groceries, Samuel's food and etc. Then Monday, pack and leave whenever. No rush. That is nice because I forgot how to rush anyway. I am still trying to get out of handicapped mode. My mind is still reeling from the weeks events, but I too am happy that next week will be fun and offer hope for the future. Ridding ourselves of the rig which was a constant reminder of bad days is a great first step. I know I will be in heaven the day we move from this house too.
It was fun to buy the bus with Samuel along. He is just so cute and it makes me to happy to see him feel well and spread his joy. Everyone was really surprised at how happy he was considering his past. They also saw him briefly yesterday so they noticed how different he was today when pooping was not a problem. Course, he is back to not being able to eat much because I don't want to take any chances before we leave.
Well, that is it for tonight, so much to do, so little time. I just love my family! It thrills me to see everyone so excited about the Backus Bus, and happy to be going somewhere "fun." My parents did not get along when I was growing up so family trips were NEVER fun. In fact I dreaded them. So it seems funny as Mark and I sit in the front of the Backus Bus. It makes me feel like we are in a Motorhome, like when I was little. Except now, ha and I are the parents, and I know we will have fun because unlike "my" family, we all like each other, LOL!
Please pray for our safe travels and that Samuel will be able to feel great and not have his fun hindered by his butt. Thank you!
9/1/06
Well, things went from okay right back to pretty much suck with Samuel. Today has been pretty awful. We did some running around to prepare to leave which included purchasing Samuel's new port a potty for the car. We were gone about 4 hours total and had to stop three times for him to take an emergency poop. It is not all that easy to find a place to stop NOW and it just angers me to think that this is what his life is. As I think forward to December and how many days still remain ahead of us like this, I just pray that when he looks back over all of this, reads the journal and remembers it in his own way, he will know that we made him wait longer to get it done right rather than take the chance of fixing it wrong. None of us think this is fun, or humane in any way shape or form.
Slimy came back today for one of the most traumatic visits to date. I will be really surprised if he will allow us to do this again. I mixed what was supposed to be a "soothing" enema because right now he is just oozing mucus again but it was anything but soothing. I guess it burned the outer skin, or it was the combination of it and the mucus, or maybe it was just destined to be bad period. I don't know, but I do know that it was horrendous. He leaked before the fluid was all in and ended up pooping around the balloon on the inside. I was thinking he would just poop the balloon out, but he was unable to. It is a small balloon, similar in size to the one that holds his tummy tube in place. But he could not pass it so and it took a minute to deflate it so it was hideous as he was on the toilet trying to relieve himself with this in the way. And then to make matters worse, he told me that the poop is stuck inside him and he pushed and pushed and strained and strained and it did not come out. This scared me just a bit so I am happy we at least have an appointment Tuesday and I pray that those new sets of eyes we hold so much hope for will really look and want to help us more than just opening it up. As I keep saying, I think the anal issue is really secondary to something else going on, I just don't know what and nothing tends to show up on scans either because they do them with liquid vs. food. Liquid going through fine, food does not. I am tired of telling him he cannot eat what we eat, and/or we cannot eat the things he cannot eat but wants to.
So other than that, no labs today. His port would not draw, I am sure because he was dehydrated from diarrhea. I asked them to give him a bit of extra saline flushes to help a little and it did. I took him in there looking pretty bad and we left looking better. But I was hoping to have labs to take to OR with me and of course a port which draws took, so I hope it changes it's mind Tuesday. Thankfully he is a good sport when they decide to take 45 minutes to mess with it. I finally just said to forget it, we needed to go. He had pooped in his last diaper and was in shorts only so we were in a time crunch! I will definitely be taking morphine to Oregon for those long drives. He could hardly sit by the time we were done in the clinic.
So, we leave Monday, come back Thursday. I am taking the laptop, camera, camcorder and hope to have some happy memories on film for us to cherish. I pray that God allow Samuel to have some pain free days where he can enjoy being a boy. He is very excited to be able to go "Swimming with my Mama." Ah, yes! If you might be in a pool with our family better bring your ear plugs, we are LOUD!
Thank you for checking in, praying and to the sweet ladies who sent donations for Samuel to enjoy his trip. Much love.
8/31/06
Well, Monika and Pierre took my letter and turned it into a masterpiece and so I sent it to Medicaid at 9am today. I got a response which made me realize that he must have either not read it or chose to ignore everything said.
I was able to speak with a paralegal today about the issues with Medicaid and was again told that we are pretty much screwed. They are looking into loopholes but basically WA State Law says if the surgery can be done here, they won't pay it out of state. Even if we go to a judge, while they may be compassionate toward our situation, law is law. And even if we did have a leg to stand on, they probably wouldn't be able to really "do" anything until December anyway. They haven't given up entirely though, but did not provide much hope. Every way we turn seems to be a brick wall.
So after both of these came through, we are left with trying to make the best of a bad situation. At lease Dr. Levitt is willing to come to Portland and do this surgery right. He did tell me that after Samuel has the surgery things will be so good that we should not have to move across the country at all. As long as we have a trusted local surgeon and doctor who will defer to him, that should be all we need. So I always try to find a reason why things happen the way they do, maybe the "trusted" surgeons and medical care will be in Oregon. We at least know they will contact Dr. Levitt and they have been excellent in keeping me informed and treating our problems like problems. I am going to look into Oregon State Medicaid and see if they are one of the contracted Medicaid States with Cincinnati, it might be worth relocating there if we could be treated locally but still have the option to go to OH if it ever came to that. Surely make moving easier and less expensive too. So, I don't know, just trying to make myself feel better here. There has to be a reason the doors just keep slamming in our faces. I am just so sorry for Samuel.
But today he has had a good day and has been able to poop on his own. The threat of Slimy is enough to make him really sit on the pot and try to go. So I also hope that after the dilation he will get some relief immediately. At least we know he is not impacted and also does not have an ileus so these are all positive things. We have made it farther in between dilations with the help of Slimy.
So, the other news is that we have decided to make the trip to OR into a mini vacation so will be heading to the beach for a few days after the dilation. We just HAVE to do something as a family, away from here, away from this. And hopefully come back refreshed enough to keep going on the house and trying to make Samuel's days more comfortable until he can get fixed. There just doesn't seem to be anything else we can do from our end as far as fighting the system goes so there seems no point in rushing right back to reality. So, Daniel will now go along and hopefully we can all remember what "fun" is.
8/30/06
The news today is that we will go to Portland Monday, stay the night in a hotel and have Samuel's dilation and EUA the following morning. Reservations are made. Keeping this appointment means that Samuel's anoplasty cannot be done for another 4-6 weeks. This seemed so wrong to me this morning and it was hard to overcome the feeling that we are doing him wrong. He needs intervention, either the surgery or a dilation, so our hands are pretty much tied.
I am thinking of sending one last letter on Samuel's behalf to Medicaid JIC he might find some compassion and change his decision and let us fix this rather than put another band aid on it. I am not holding my breath and the letter has not been sent yet as I am waiting on Monika's expertise with editing it. I cannot seem to keep it short and sweet. It probably doesn't matter, but at least I will know I tried as we make the journey south to do something that doesn't solve the problem. Knowing it can be solved and we are not solving it is a hard burden to carry right now.
Mark and I were able to go out to dinner alone tonight. I can count on about three fingers the meals we have went out to alone this year. So that was very VERY nice for us. We had to sign more papers at the bank tonight so dropped the kids off at his parent's so we could do that without the extra "help." We sure don't get much chance to do things alone and it was wonderful to have a little break and alone time with my love. Course all we talk about is what is going to happen next week, next month, in December, where to move and etc....
Samuel was up twice last night with smeared pasty poop everywhere. It used to be I got up in the night to nurse a baby, now I get up to fix a butt. He really needed a bath and an enema at 4:30 this morning but I was just not even going to do anything then. His skin looks horrendous today. he could hardly walk up the stairs last night.
Kaysha is looking forward to going to Oregon and staying in a hotel again. Daniel doesn't want to go so he will probably stay with Mark's parents. I look forward to righting a wrong, at least in my mind. The last time I stayed in a hotel it was when Samuel was hospitalized in 2004. It seemed so wrong to be there without him, to play in a pool and try to enjoy something without him. To sleep without him. So at least, on some level, I hope to feel like that wrong has been righted when we go. I hope he can have some fun. I hope Anna sleeps....
And in trying to find the bright side in all this, I guess that when we go to Oregon, still hoping some miracle will happen and we can just go to Cincy instead, but when we go, we will again have new eyes looking at Samuel and that has historically been good for another opinion, or solution. Knowing that these people are trusted by Dr. Levitt helps as well. I hope they have something interesting to say, or new information which might piece together why his gut seems to still not function as well as it should.
Hopefully tomorrow we can get back on track around here getting things done again rather than just feeling paralyzed and caught up in the drama that never seems to end. Thank you for your prayers so much!
8/29/06
Not a word from Oregon, so no news there.
I did call the family legal services line and was referred to an agency in Tacoma who is supposedly contacting me asap. It was marked as urgent. I have sent in a request for a hearing in regard to the denial of services and supposedly this firm is going to be able to help with that.
But as things stand, Samuel either needs the anoplasty or a dilation in the next two weeks. If he gets the dilation, that puts us off from doing the surgery another 4-6 weeks. That might be enough time for all this other to happen and if they end up having to approve it, then fine, we have saved ourselves a month or more of waiting. If not, then what have we lost....we have already lost. Samuel has lost.
Well, Medicaid just called me on his cell phone at almost 6pm. Apparently he did not talk to Portland today either. We are fine to go to Portland for the dilation and EUA, etc and whatever else they decide is necessary while there. They won't put any stipulations on that. So that is nice, but it is minimal solace knowing that we will have to go twice for dilations and again in December for surgery.
He hasn't talked to the liar at Children's but still plans to as well as looking over our Ileus x-rays..
He could not believe Dr. Levitt would consult with us for free and interpret x-rays and all of the like. Even commented that Dr. Levitt would want to "promote his business"......if you can believe that. Like HE needs to promote his business. I think his service to Samuel speaks for itself. I wish I had been thinking when he came up with that because I would have said that I was sure Dr. Levitt REALLY wanted to fly out to Oregon to do Samuel's surgery and inconvenience himself in that manner. I am sure it is all to promote HIS business and not to help Samuel at all. Please! If Dr. Levitt was all about his business, there would be no freebies. The Medicaid dude is almost likeable until he spouts out something like that. It did sound like they do plan to compensate Dr. Levitt for the surgery services in December. he is also planning to follow up to be sure that everything is lined out and we have a plan that will be followed rather than fall through the cracks...like we are used to.
I spent a little time last night trying to think of who Dr. Levitt reminded me of and I realized it was my ND. Same mannerisms, same voice almost too. Similar medical views and similar ways of speaking to families, etc. He did feel like a familiar person whom I had spoken with before even though I never had until yesterday and now I realize why. I think I tend to notice these things more than the average person since I don't see faces, but listen to voices. Someone asked me in my younger days why I never made eye contact or even looked at people who were talking to me. Well, first, I don't make eye contact with anyone unless you are a foot from my face and that would be right in your personal space so wouldn't that make you uncomfortable and two I don't need to look at you to hear you. Just don't nod when I ask you a question, okay? I don't usually notice eye rolling either so that doesn't bother me in the least, LOL, much to some of my kids dismay. I will know your voice anywhere given a little time to hear it.
I did tell him that we were asking for a hearing and he said that if the judge orders him to send us to Cincy, he would then do so. Like he would have any other choice. But as it is now, things are just going to be set for Oregon unless the hearing would change things. Knowing this system, I will probably get a date two months from now and it would make very little difference timing wise. I just wonder if someone actually took the time to listen to us and our situation rather than just looking a medical documents and financial statements, things might swing our way. But I could be wrong. I think the worst thing in all this is that no one is going to do the right thing for Samuel because we ask them to, at least not in this state.
He did say he was making it his mission to find us a good pediatrician here somewhere......so we shall see about that. As you know, we have none ATM so that might be okay if they are not a pompous ass. I have yet to find a Ped I like. You know I asked our former Onc to find us someone and HE failed, or just never bothered to try so I am not holding my breath on this one.
Well, at least he did not pull something stupid and I hope the liar at Children's gets caught. Medicaid was already trying to say that maybe there was a communication failure and he did not get the memo. I told him about having to be inpatient 24 hours before hand and asked why anyone would prepare an OR for a child who wasn't ever inpatient. I don't know what will come of this, probably nothing but it is really annoying nonetheless and I hope that something is done since I am sure we are not the first and won't be the last either.
Other than that, Samuel is doing about the same....which is not saying much. Of course Medicaid never directly asks about Samuel and how he might be handling things. As usual, he just wants someone to fix his butt. He doesn't want to poop anymore but what else is new. I am tired of hearing him scream in pain and cry and now worry about whether Slimy is coming to visit or not. Yes, it is just another day in paradise here. I was almost able to get back into the swing of actually working on Mom and Me stuff and now I can't again. Lovely, isn't it. My mind is preoccupied and I feel handicapped by all we still must endure. The mountain seems insurmountable when you look at the date of December 4th. I guess you just don't look up and believe you will get there eventually. Pray for safety along the way. Pray you don't fall off any cliffs and have to start over from the bottom again. There just isn't much to look forward to so I pray my attitude improves. I felt a lot worse when we were waiting for Medicaid to make a decision on this than I do now I guess. I know the worst has already happened, and there is hope in the long run. But again 2500 miles separate us from help.
We go back to the Oncology Clinic on Friday for port maintenance and labs. Other than that, no major plans.
Thanks for checking in and praying....
8/28/06 Second Update Today....
Every day I get up and think things will get better and then I have a day like today. If you missed the earlier update, scroll down.
I have spent the entire day on the phone. I talked to Oregon today to follow up on the Medicaid phone call to them and make sure things are happening as I am being told since everyone seems to have a different story. They assured me that they feel Medicaid figured out we ARE taking care of our child now. I think if you see those stories on the news about hospitals saying X family is not allowing care for their kid, you might think twice about who is actually telling the truth there. I know I will. The liar at Children's, or liars, well, I don't know what has transpired on that end as of yet. Sounds like since Medicaid figured out from all the other parties that we are trying to get our child the best care that they are dropping following up with them now. I will be sure to find out tomorrow if the liar changed his story. But boy did they act like a dog with a bone this morning and I can totally see how a family can get railroaded if you do not have documentation of everything you do and say if there is a conflict.
Dr. Levitt called me this afternoon. Totally unexpected. I contacted him by e-mail to let him know what Medicaid was up to and the allegations of Seattle so he could weigh in. He called me after talking to the Medical Director at Medicaid. Basically, he told me we are screwed. He did not actually come right out and say that, but we are. In order for Medicaid to allow us to go to Cincinnati, all hospitals in the tri state area have to say they cannot help Samuel. We currently have Seattle Children's saying they can and want to so we are screwed. That is it. They can call around to all the other lesser known hospitals and most likely get some arrogant SOB who will take it because they ask them to do so. No one in the Medicaid system cares about Samuel at all. All they are interested in is money and even more than that, they seemed to really enjoy calling me to tell me about Children's allegations. Dr. Levitt assured me that they are done with that avenue at this point so while that is good, it is unnerving to know that some idiot can say that and some other idiot will listen and take it as truth. Thankfully, this idiot forgot to tell all the low people on the totem pole to lie too so I hope he feels like a fool tonight. I also hope Medicaid will pursue the medical records and crappy care we got at our last ER visit and deny payment. But who knows, they all seem to have their own agendas.
Well, on to my visit with Dr. Levitt. He basically told me point blank that he can fix Samuel's anus right the first time. And that we will be pleasantly shocked at how well things will be after it is done. He is NOT sure if any other surgeon can fix this right however, so if we have it done, chances are it will have to be redone later. Or worse, and we don't even want to think about or worse. He said he would be honored to come to Oregon and do Samuel's surgery........on December 4th. Ugh! Portland called him and said they would feel more comfortable if he operated with them rather than them alone so there is my answer about that, as if hearing from Dr. Levitt on the matter wasn't already enough. He suggests we go to Oregon, get on the schedule for a sedated exam and dilation. Then we are in with their surgeons and established there, they know us, we know them. Once that is done Portland can call him and tell him what they find. He said he trusts them to do that and to care for Samuel. We need to find someone here who will be willing to take x-rays if we get into trouble and send them to him so he can advise us on what to do next locally. So that would be our Onc clinic as it stands now. They won't try to fix it or ask 20 questions, they will just do it at our request and it will be done. Dr. Levitt figured we should be able to get 6-8 weeks out of a dilation with daily enemas to keep things flowing out. I talked to him a little about wondering if Samuel's rectal pouch was just not working and he said we basically cannot work on that problem until we correct the anatomy. So, I am sickened to say that it looks like we will just have to keep living this nightmare another 3 months. Hope that we can get a dilation in the next week or so and most likely one more to get up to the surgery day. Dr. Levitt is planning to fix Samuel in December, period, end of story. Things with him were left that if he is not hearing from me it is because Samuel is doing fine........loose definition of fine...........and if he is hearing from me, it is because we need him. He was very down to earth, easy to talk to and I did not feel like I had to rush to get everything out because he was too busy. So that was nice, and a nice way to close off a pretty awful day. But as nice as it is, we are still no closer to fixing Samuel and I feel ill everytime he screams out in pain knowing that we still have nothing we can do for him but wait.
So, as Monika says, it is cruel to make him wait. I will be trying to see if we can find an attorney to take this pro bono and help pursue Medicaid to let us go to Cincy sooner than December. And if not, then wait out going in December which seems like a REALLY long way away. That is of course, unless Medicaid calls me tomorrow with some other stupid thing. I am fairly sure Dr. Levitt did not tell them what he told me as far as what to do and how to hold un until the date. And I get the impression that Medicaid thinks I should just go wherever they pick or do this or do that so I hope he doesn't call me with something really stupid like we need to go to Spokane now because I will refuse This isn't right. This is cruel. If we have a dilation done now, we have to wait at least another 4-6 weeks as it is. I feel my stomach feeling ill as I think it all out.
So as I go to bed tonight, I hate to admit that I fear what tomorrow brings. Medicaid left things such that it was not MY responsibility to coordinate care, but theirs. Yes, I am going to let them lay out all the plans, they who have not even ready my chart. They who were so intent on us putting our child at medical risk. This is out of control. Someone please let me off the roller coaster now.
PS, to the Klein Family, THANK YOU! What you sent was absolutely perfect and incredible. What a huge surprise. I would e-mail you personally but I don't have your contact info. Thank you for such a well thought out gift. We were overwhelmed by your generosity.
8/28/06
I received my denial from Medicaid today. I also received a call from someone at Medicaid this morning giving me the name and number of the head honcho there, said to call him. So I do because after reading the denial letter I am pissed and hey, I have nothing to lose.
You will NEVER believe what has been said and this is just a fine example of the condition of our medical establishment.
He has informed me that Seattle Children's, our surgeon and another Medical director from there, have called him to let him know that Samuel did not show up to his anoplasty from, Aug 17. We cancelled this appointment for surgery on the Monday the 14th before. They state we did not cancel it, won't return their calls and they have lost thousands of dollars. Also, they state that the doc in Cincinnati and our surgeon decided Samuel's anoplasty could be done there in Seattle and that Seattle never transferred Samuel's care to Cincinnati. Now they claim Samuel is at risk and WE are not taking care of him. They are concerned for Samuel's welfare.
How do you like that? And of course since they are all doctors, they tend to believe each other. So after MANY calls to the people in Seattle who I have dealt with, the complaints dept and the surgery scheduler who cancelled our appt, we got that all straightened out. There was never an OR ready for us and they did not lose thousands, SOMEONE is a liar. I don't think I have ever been SO LIVID about anything.
So after talking about all the really awful things that transpired in Seattle and giving them the names and numbers of all the people in Portland we are currently dealing with, I guess they decided we ARE taking care of our kid after all. OMG, I am just in disbelief over the entire thing. Supposedly they are all having a teleconference, the doctors at each hospital and Medicaid to see how this can now be managed. Thankfully, I had already sent a letter and contacted Oregon early this morning telling them we CANNOT wait.
Also, the Medicaid director told me that there was nothing significant or out of the ordinary about our case. I asked if he had read the chart, and come to find out, of course, he had only read parts, which probably means none. And he now feels it is HIS responsibility to find doctors for us. I laughed out loud on the phone about that and told him good luck. All our records have already been sent to Oregon and he said that wasn't MY responsibility. I told him if I waited on them, Samuel would be dead by now since no one follows up or gives a crap. Oh, I am sure he has never had such a "pleasant" phone call as that.
I don't even know what to pray at this point, this is out of control. Pray for Samuel I guess, to hang on while these idiots sort it all out because in my way of thinking, we have already lost everything as far as his care goes and have nothing left to lose with Medicaid. They have already said no to the one place we want to go.
Thank you.
8/25/06
I cannot believe I am even writing this. I got a prompt call back from Oregon today and their tentative date for Samuel is December 4th. Did anyone else's jaw drop to the floor or is it just me banging my head against the wall. So much for emergent, so much for less than a month. I only talked to the administrator for the department and the surgeon I spoke with last week is gone until next week. I told her that he needed to call me because we cannot wait that long.
Do you realize that we have been trying to get this done since May? I really don't understand why on earth this is so difficult. You know if I wanted to get Samuel back into chemo treatment, I could do that tomorrow and have Oncologists lining up to poison him TO DEATH. That would be no problem, but to find someone to clean up the mess of their poison, well, I guess we can wait forever.
Right now things look and feel impossible. It feels impossible to wait this out another three and a half months. It feels like we will never have a life, never get out of this groundhog day. Never go on a much needed vacation, Samuel will never have any decent quality of life. Never move or ever get this house finished. Do I need to go on? Is it really that bad......YES, it is. Dealing with Medicaid has been probably one of the most frustrating things I have EVER had to do and I still don't have a denial from them to even ask for an appeal even though I have called them several times in the last TWO weeks.
My options are to appeal their decision and send yet ANOTHER letter to fall upon deaf ears or people who just are not human and cannot comprehend our situation because it is unheard of. I can talk with the surgeon in Oregon next week, possibly send HIM a letter explaining all of this again, as if I did not already do that. I am SO TIRED of sending letters, I can tell you that. We can go to Oregon and have them give us a second opinion knowing that they will at least talk to Dr. Levitt and discuss their findings. I know this, we cannot manage this another quarter of a year. This situation must be resolved so I am leaning towards heading to Oregon and having them do every check and test they can think of and I hope Medicaid has to pay A LOT for all of it. Get another opinion and help in troubleshooting this mess. I am at least going to see if they are interested in helping there and getting a sense of if we want one of their surgeons to just do it and get it done. At least then we can move on. As things are now, we are stuck. And let's not forget Samuel. I was thinking today as I was listening to him try to poop that he will be able to comfort a woman trying to push out her baby because he will have some sense of the pain. Isn't that awful? And there is nothing we can do but stand by and watch. He asks still daily to go to the hospital, to poop with his stoma again.
I am concerned that Samuel's anus closing up is only part of our problem. Yes, it is a major problem, but I am also wondering about his rectal pouch and if it is functioning. Also, any food he eats tends to be a cork, it gets stuck somewhere and we end up with a few days of issues and have to call for reinforcements...Slimy. He still poops ten times a day or more and has gotten me up every night the last week with poop everywhere. It is either water or too solid. Not much in between. In his sleep he will pry it out of his butt and come downstairs with it all over his clothes and face. He is still always dehydrated and even the extra water bolus is not keeping him from sunken black eyes. Things are not getting better, things are getting worse. A year post op, he should be doing well and things should be getting back to normal. Needing a port a potty to travel more than an hour at a time is definitely new....we were not doing this earlier this year. I don't know if righting the anus will right everything else or not. I don't know if his rectal pouch simply works half the time. This is why we need the bowel management where they take X-rays EVERY day until a plan is come up with to make this more livable for everyone. But of course we cannot do that either. I also don't think this is something that they will be able to troubleshoot in a day or even a week. I wonder if it might take longer.........SO................I will speak with Portland to see if they would like to help troubleshoot this, do the surgery sooner, or move up the date with Dr. Levitt. Being here at home with no one looking or remembering Samuel is certainly not helping our cause and as it was when we transferred hospitals a few years back, new sets of eyes always find different things to look at and come up with different ideas for solving problems.
Thinking of going through fall, everyone's birthday's Thanksgiving and then recovering from this surgery right before Christmas...................Back to beating my head against the wall. Samuel deserves so much better than this. I don't even know where we might live by Christmas. Probably here the rate things are going. That is even worse. There are no clear cut answers and no clear cut path, again. This is all so frustrating, disappointing and wears a person down. We just want to move forward, we just want Samuel to have some sort of a life which does not mean he is tied to the house, and tied to the toilet and feeling like he has had ten babies in a day. Really, is that too much to ask?
8/22/06
Samuel had a pretty good day today. Slimy had to visit. Today "Slimy is a bully." Well, Slimy makes it possible for him to keep eating so I think the little amount of insult it is is worth it. He was up twice last night, once pooping everywhere and ended up in the tub. Emergency 4am bed changes and baths are NOT my thing He came back to "snuggle" with me about 6am this morning and we slept in until 9am. So that was wonderful after being up twice with poop explosions. So we should be good another two days. And his butt looks pretty good all things considered. He has been letting me put cream on it and it gets easier as it heals. I compared the foley to the dilators today and it is about equal to a 4. I met resistance getting it in, or so it seemed, I might have just missed the hole initially.
A friend asked me two questions I wanted to put here because one was just funny as she asked it today and the other I remembered to check today. One was if I ever dream. I have always dreamed as long as I get a good stretch of sleep. I never dreamed in the hospital after Samuel's diagnosis and probably for the following year after. I dreamed last night that Samuel and I had just arrived in Cincy. Yes, talk about taunted by dreams. A few nights ago, I dreamed I was shopping with Delma. We were just shopping, not talking about anything important or pertaining to my life now. Just like it was something we always did, and it was, but like we had just continued that weekly tradition, now some almost ten years later. I woke up feeling like I had really been with her. I also felt cheated because I had opportunity to talk with my best friend who is NOT on this earth and I never said anything I would have wanted to. Mark tried to console me by saying that maybe we just "knew" and needed no words. I felt sad this morning that I wasn't in Cincy today and that again, nothing has changed.
The other question was about what my blood pressure is. LOL. Today it is 116/64. Shocking, eh? Mark's is high, 159/86. He really needs to start taking his vinegar. I know why mine is fine, and why his isn't.
Our home is being appraised Friday, surprise to us. The bank wants an appraisal as a formality at this point. So we are scrambling to tidy up. You fix up one room, you trash another to do it. Then you clean and fix that room and trash another. Well, we are trying to clean up the trashed room. I was packing up some things in my room, mainly photo albums and my personal pictures from youth. Samuel was looking at them and I introduced him to "Piglett". Piglett was my first horse. She was white, so you can use your imagination to know why she got the name Piglett. Well, I tend to pick nicknames based on characteristics....hence Pooper. I also introduced him to my brother, Jason, also in heaven. And to Delma, again. He amazes me because he remembers all their names and acts as if he somehow understands who they are and why they are important. Tonight as I put him to bed, he showed me a tiny picture he had somehow taken from my pile, of Piglett. I was riding Piglett. I would have been 13 years old. He wanted to sleep with it. It made me wish I had time to make him a collage of some of these.
Well, bedtime is here. Who knows how many times I will need to get up tonight. Much love.
8/21/06
There is nothing new to report as far as plans in Portland. Haven't heard a thing and honestly, I would be surprised to hear something this soon. I will be calling later in the week if nothing is heard one way or the other. As Monika says, they would not have called me to even bring it up if they were not going to make it happen. But, with so much disappointment around us all the time, I am not holding my breath either. This surely looks like God's planning, so I know He knows we cannot wait forever. He also knows I just don't trust anyone anymore so communication is a must here....as if we have any other options.
Things with Samuel have been mostly the same as last week. Every three days or so, Slimy makes an appearance. In Samuel's words, "Slimy is a dummy." So he is not impressed, but the thrill of an ice cream sandwich at the end is enough of a reward that he allows us to do it. I can see he really would prefer not to, as would we, but it is also obvious how much he trusts us, at least with this, and allows it with the minimal of fighting it. It has been effective thus far though two nights in a row he got me up at 2am because his butt hurt, once he pooped and once he did not. Today, we had to make an emergency stop on the way home from the store because he HAD to go and somehow managed to hold it. We looked at port a potty's today. We will probably get a cheap folding one with a bag for the car. No kidding. We cannot go anywhere for very long and if he eats, well it is all over. It is cruel and unfair to ask him to hold it, he can't. At home, he is often taken by surprise in the hall, halfway there, and just could not hold it any longer. I think he is finally figuring out that when he feels like his butt hurts, that is really poop cramps and you better get to the pot and I mean NOW. Things do seem to be coming out in varying consistencies, but moving through. Slimy is a nice back up plan at least and we are thinking that if he will get to where he will let us do that, we might be able to use the dilators if we get to that point without needing sedation. That would be nice and save a ton of hassle. Not holding my breath on that one either, but it is a nice thought.
We all feel the burnout. We all feel the sadness of having to wait, no guarantees, and not being able to get on with life either. I really REALLY want to get out of here. I keep looking at my desktop wallpaper, a beach picture that I took last year while there, and want to be there. In a nice place, or just camping, for a week. I want to leave for a week. I told Mark I am seriously thinking of finding out about doing Samuel's Make a Wish right after his butt is fixed...and go to the beach, or something similar. Maybe we could all have some fun. Kaysha and Daniel miss fun. I really forgot what fun was. We are just surviving right now. There is very little fun. Yes, I do enjoy those moments when Samuel is happy, the kids play, for a moment things feel good. But those moments are stolen the instant he starts screaming. And every day he screams. And I mean not once a day but 10-20 times a day, about his butt, and it hurts. He screams when he is pooping if it is too hard, too big, too acidy, so that just about covers every poop he does. I have been trying to get cream on his butt again with Q-tips and he says he would rather do Slimy than butt cream. We are all a bit burned out on the house fixing, mainly because it has been so interrupted by all these butt problems and insurance idiots and doctors who just don't get it. I keep thinking I will wake up and someone will have some answers and we will have a date, and we might have some hope for a future which does not involve so much pain, or poop............and I go to bed and I get up and I go to bed and I get up and nothing changes. It saddens me that my older kids will remember these days. I don't lie to them, they know what is going on. They might not understand everything but they know that the doctors have failed Samuel. Thankfully, they have no concept of just how much. They know that Samuel is always hurting and it is routine now for them to ask if he can poop today or not. They ask when we will go, which hospital, and every day it seems they get a different answer because we too don't really know. I am thankful every day that the one constant in this is that they have two parents who can manage anything as long as they are together. They don't have to wonder about US as a couple, as friends or as their parents. But the fact remains that we are all dying for some "fun" and I just don't know when that will happen. I guess we will get Pooper his port a potty and go from there.........
I cannot end this without telling you about Baby Donovan whose family we did a raffle for awhile back. He has relapsed for the fourth time. He is 20 months old and has spent his whole life on some form of chemo. It is just sickening to try to comprehend what kind of life he has had...or hasn't had and even worse, what is to come no matter what choice they make. Every choice feels like slitting your throat or jumping off a cliff. Please pray that God show them how to proceed at this point.
Thank you for checking in. Much love.
8/17/06
Well, finally we got some amazing news, truly a miracle if everything works out. Let's just say that I am beginning to see the Red Carpet.
I called Medicaid today and actually GOT someone who told me this is still denied and that they are having a meeting tomorrow about our case...supposedly to get me our denial letter faster??? What the heck? I have no clue. The supervisor over the doc on vacation this week was supposed to call me, but no call. I could feel my headache coming back.
Meanwhile I called Oregon to see if there has been anything said. The person I have spoken with there, Suzy, told me that the Chief of Surgery grabbed her in the hallway this morning and told her he thinks he has a way to help Samuel. I told her if he was able to read my note and not get too angry at my attitude, then that was definitely a brownie point in their favor. So I faxed all the records I have here to him directly and Suzy told me she was just going to have him call me personally. So I figured that was also a good sign. I couldn't talk to our surgeon in Seattle if it was life and death. So, he was in surgery all day today and I figured I would not hear...but I was wrong.
About 4pm he called, identified himself and told me that they have a plan and wanted to run it by me. So, he starts out by mentioning that Dr. Levitt is good friends with so and so, him and another so and so, all surgeons there. And their department has been trying to get him to come there to do some teaching. No one wanted to call me until they knew if it might be a go and now it looked like it will be. In his words, "Since you cannot get to Dr. Levitt, we will bring him to you, how does that sound?" I am sure you can all feel some sort of elation just reading this so you can only imagine how it felt. Totally unexpected, totally shocking, totally miraculous. Of course the catch is that I have to agree to allow all their surgeons in to view and help. No problem, obviously! I might see if I can get in too. And they get that Samuel cannot wait and this has to happen soon, so he asked me if we can wait another month at most. Obviously you know the answer, like we have any other choice, but plans need to be made and I am sure Dr. Levitt has plans that need to be changed. I haven't heard from him, just Oregon who has been conversing with him for the last day and a half since they got our records. I laughed, I cried, I am in total and complete disbelief. I have prayed that God would have Samuel's angels working on this in the background since things have been so quiet here and no one is talking to us. Mark and I are both just reeling and trying to absorb the news. Going to Portland would be so much easier for our family than Cincinnati since no flying is involved and we could all go. I would not have to do this alone. We would just move there for as long as it took to get it done. (Keila, I know what you are thinking....here you are leaving) I let this surgeon know that we will have to get there early for bowel management to be certain his skin will be in the best shape. I told him about Samuel's anus specifically and how sensitive it is to just one acidic poop. So their hospital will be in contact with us on how things are proceeding, etc. And after dealing with Seattle, I just hope that they will be in good contact and not drop the ball. It is just so hard to trust anyone to follow through anymore, but this is really truly hopeful. So we will see how it all plays out. Really, I have no words for how I am feeling right now. You want to talk about totally taken by surprise. This was just so perfect, and so in line with what God would want fur our family to make things easier on us. God knows I was not so impressed with flying, especially now, and also being alone in a new place. God knows Samuel's butt might now enjoy the journey, and that Samuel needs his family. God knows I need Mark to stay sane, LOL. Maybe tomorrow this will sink in. Or more than likely, when we have more firm plans in place. Please join us in thanking God tonight for this miracle and praying that all the timing will be right for this to happen quickly. Speaks volumes on Dr. Levitt that he would come here to help Samuel. I am still trying to take it all in and feeling cautiously optimistic.
Samuel is doing better today than he has in the last several weeks. His butt actually looks better and he can eat and poop by himself. He has been pretty happy today. My headache went away pretty much right after I talked to the surgeon in Oregon. Guess it is obvious what caused it. Thank you for all your prayers and love. Please keep praying that this all come to pass.
Kaysha's Wisdom....
She says, "I swear that Pooper's going to be a mountain climber when he grows up."
I ask why.
"Well, because he can climb anything you put in front of him."
He was climbing on the furniture at the time.
"He is also going to be a skydiver," She concludes as he jumps off the arm of the couch.
Faith cometh out of the mouths of children...we should all listen and take note.
8/16/06
Things continue to be exasperating here. I should have had the denial in writing from Medicaid by now, and I don't. I have called them, they don't call back. The doctor who was helping us last week from Medicaid is gone this week. I am still waiting to hear from Oregon as to whether or not they think they want to take Samuel, but I did get the number of anoplasties they do annually and it is 30-40 divided between five surgeons. NOT enough practice. I have not heard from the surgeons there, just admin who gave me that number. It doesn't console me at all or give me any more confidence that they are the way to go anymore than Seattle. If we had kept our former plans, Samuel would have been admitted to Seattle today for gut clean out and whatever the surgeon thought he was going to do surgically tomorrow. His butt is severely broken out, it could have never happened. And my thoughts are that our surgeon there would have probably done it anyway leaving us with more problems they don't know how to fix.
Speaking of our surgeon there, I got all our records from there today. Back in April, the OR trip that bought us a ticket inpatient....well I read the OR report and it says that his anus was OBLITERATED and unrecognizable. It bled the entire time they opened it back up. Note, two different doctors just gave us all sorts of laxatives to try to combat this for months before they actually took the time to go look..............Some nine months after the take down, the surgery that was supposed to STOP this, that same surgeon writes it is again obliterated. Note, he did not tell US that. This does not make me happy knowing that that happened without intervention and we will be headed in that direction again if we continue to not get any help now.
Nothing from Cincinnati. This does not impress me either. Is there just NO ONE who wants to help us right now? Sure feels like it.
And as for Samuel, well, he got his second enema yesterday and after tripling the dose, it was quite effective. I had him almost talked into being willing to do it, saying it was "Slimy the worm" you know from Sesame Street? Well that was all great until I was ready to proceed and then Mark had to come hold him. But it worked this time and we cleaned out a lot. And he is still pooping, but it is just burning it's way through again. He could not go to surgery in this condition anywhere. I feel like unless this miraculously gets under control, he will need Cincinnati's bowel management to get this under control and healed enough for surgery.
Once he started pooping, he sat on the toilet and pushed so hard and screamed like he was having a baby. Then I look, and there is not all that much and it is not all that big. But I got the impression that he wasn't sure if he should push it out quickly, or push it back in with his hand. It is really beyond frustrating. But I guess, he got a dilation that way, just not a pleasant one. Everything that has come after that has been better at getting through. After looking at all the OR notes for the past six months, I figure his anus must average a 7-8. 12 is the size of a newborn. After 5-6 weeks past the last dilation, it is noted he is tight at 7-8.
But once he started pooping, he also was able to eat and enjoy some happy moments....you know other than when he is pooping, which yesterday ended up being 12 times. Today, we are at about 5-6.
What is also abundantly clear is that we need to get all our doctors under the same roof again so that we aren't going one place for one thing and another for the rest because it is way too hard to coordinate stuff. And have some back up, which right now no one has our backs.
Both Mark and I have a headache today that no amount of medicine, coffee or beer seems to get rid of... gee I wonder why? Every day I wake up and cannot believe we are STILL WAITING on someone to do their job. I swear if you are not right under their noses, you are forgotten.
So as my mom says, we leave it in God's hands because no one else seems to want to bother or know what to do. It is an all too familiar position I am afraid.
8/14/06
We don't know anything today. No note from Dr. Levitt. I guess I sent him a head scratcher...or he is just really busy with people who CAN get there. I did call the hospital in Oregon today and got some helpful people who were able to get my notes directly to the head surgeons there. I sent them quite the lovely e-mail, a Jennifer Special, as Mark likes to call it. If they say they can help us, then I asked them all sorts of questions to back up their work. I should be able to choose them, and not vice versa. It would be helpful for them to just say TOO complicated and I gave them that option letting them know we have an active referral to Cincy. Oregon is really the only wildcard I can see in this.
Hopefully I will get some feedback from both parties tomorrow. At least Oregon will know we have very high expectations and have been wronged by people we trusted in the past. Therein lies the real issue anyway. How do I trust another doctor? And it is so horribly difficult to try to again, change hospitals, talk to new people, where do I start? I should have freedom to choose where to take Samuel and I don't. I thought I knew where we needed to go, where Samuel could get help, everything looks promising and the door keeps slamming on us. I am tired of fighting. I just want to rest. I am tired of calling people who do not understand, who cannot possibly understand and I wondered today if they thought it was a prank call. When you start telling it, it just sounds so unbelievable...still. It would be so nice if things would just slip into place....somewhere.
Here is what my mom said, and it is SO true. You better either never get sick, or believe God to heal you because if you depend on the medical system, they will just let you die.
So, right now, I am just believing God to either heal Samuel's butt or give me the tools to sustain us until a door opens and someone literally rolls out the red carpet and I know we are in the right place because after the ER trip, I just don't know who to trust anymore.
Samuel has had a fairly good day. He can poop and the extra water is helping a lot. His eyes still have the dark circles and sunken look today though. His butt is still sore, of course, but he can walk normally and sit and play so he has taken full advantage of that and ran around here like a madman again. Hence the dehydration. Not sure why he is not wanting to drink more. I would think you would notice you are thirsty...but he lives with a lot of other issues so maybe this is just not as important in his little mind. So we enjoyed the day and were able to relax. If only I knew what tomorrow will bring, and the days to come.
Mark almost has his new room ready for paint and he is definitely all about animals these days. His ducks are now rivaled by dinosaurs and then zoo animals. All the dinos try to smack each other and the zoo animals all have mommies and babies he plays with. His ducks are quite the family these days as well.
Thank you for your continued prayers. Much love.
8/13/06
Samuel has had a good day today. Compared to yesterday's "good day on morphine," we had almost the same happy child, without the drugs. He has been able to poop a little better today which always helps. We have been able to get quite a bit done around the house today and it is easy to do when he feels better. His butt is sore, broken out and itchy because it wants to heal and almost does, and then we go back to hurting again when he cannot poop.
We all slept pretty well last night and I feel that glimmer of hope overcoming the doom and gloom feeling. I haven't heard from anyone in regard to anything, mind you. Just probably sleep and getting something accomplished here is helping. It is nice to work together as a family. At least Kaysha, Daniel, Mark and I work. Samuel and Anna just run around and make messes in the midst our our messes. Samuel and Kaysha traded rooms today. He got the smaller room next to Daniel now as Anna and Kaysha have been sharing a room and queen sized bed. So this made things nicer for both parties and gave us a chance to really go through things and decide what to keep, what not to keep, etc. I think I feel better as things get cleaned up and organized. At least parts of the house can be cleaned and organized. I wish I could say the same for the state of our lives.
As I go to sleep at night, I often have conversations with God. Well, I talk, ask questions, and wait for answers. You might imagine I have LOTS of questions right now. Some nights I just hear nothing. I fall asleep in the middle of a conversation, or it is just one sided. Occasionally, I get some divine thought...one I know wasn't mine and I know it is a word from God. Sometimes I go to bed and wake up with that divine wisdom. Sometimes I dream something. I did not wake up with any impressions about what the future holds, but I think I did get an idea of something to STOP doing which might help Samuel right now. Also, I have come to the conclusion that he is just dehydrated and not drinking enough water. Plain water. So I have been trying to get more plain water into him to see if that will help things come though. It has warmed up a bit here and he runs around like a madman when he feels good and I think he just forgets to drink lately. Well, we shall see. I feel like these couple ideas I have today might buy us some time...and if we have to wait and he is feeling good, then it is not so bad. If he is miserable and we have no help, well then that is quite a different story entirely. We just need to find a way to hold on...until we move because that may well be how long we have to wait if there are no humans in this state.
Thank you for your prayers for us and for me specifically.....I do feel like a different person today. Not paralyzed anyway.
As I was flipping through the channels last night I caught our former Onc in Seattle on TV. So of course, I stopped to see he had to say. For a minute there, it seemed like he was thinking about Samuel. He was talking about the devastating effects of chemo on some children while the majority of others are okay. He looked right into the camera and talked about a clinical trial he is doing to try to determine if there are any genetic markers which would show how chemo is eliminated in the body. The hope is to find something to show which kids can and cannot tolerate the poisons so they will be able to STOP the horrible side effects that some experience. I don't know when he started this research but his hope was than in a year or two, they will know something. I wonder if Samuel was one of the reasons for this....I sent him a note thanking him for trying to spare others from this since as you all must know by now, if your child is diagnosed with cancer, your options are chemotherapy or CPS taking your kid away and they still get chemo. For all the things Samuel has had to endure, and WE have had to watch and also endure, it would be nice to know that someone cared enough to try to stop the side effects for others. It consoles me a little to know that all of this has not been in vain. I just don't see how a person could be our Onc and have all this NOT effect them, NOT make them want to do something to change things for someone else. I will LYK if he ever responds.
8/12/06
A year ago today I was waiting on Samuel to come back from his take down surgery. This afternoon he told me out of the blue that he wanted to poop with his stoma, he wants his "air bag" back. I will always be haunted by the feelings I had last year wondering if this was the right thing to do for him. One year of mainly misery later..........I still wonder.
We have been brainstorming today options of getting us to Cincinnati. I could just move there......but that poses all sorts of issues related to me not being able to see, and then Samuel will have to get all his care there until Mark gets done and is able to sell the house here. We could just all move as a family, try to rent there, and once this is all settled, Mark could come back to finish up and sell the house. Both options are costly and will use up most of the money we have left to finish the house with because we will have two homes to pay bills on. We could hire an attorney, at the risk of being out all sorts of money that we may need for airfare, living expenses, etc. This is not a malpractice case to the extent that we cannot say irreparable damage has happened. This would be going after Medicaid directly, which means added time in getting them all the crap I just spent two weeks getting to Medicaid. If Samuel was stable, then it would be okay as things would not feel so emergent, but things are not stable at all. So the attorney option is possible wasted time and money and the best we could hope for is a judge making DSHS pay the attorney fees. Again, getting a court date should it come to that, will take WAY TOO LONG. We could try to find someone here to do the surgery....but then take the risk that they have no clue what they are doing. This also adds time and money to the sorrow because we will then be going to Portland many trips. No surgeon will just do a surgery because we ask them too. We would need to do the entire work up that we have already done here, there. So more studies, more EUA's, more time for his anus to close up and leave us in another horrible situation. Establishing in Portland would be fine if we were planning to stay here....but we are not and I don't have to have three hospitals involved in record keeping just to move again to another hospital. Then there is Samuel, who really cannot wait much longer. We spent the entire night up with him because he already cannot poop. So what was that, five days of okay and now right back to misery? We did an enema today, but it mainly hydrated him in a much needed way and did not do the job we were hoping for. Plus he is miserable and every day is taking a toll on us all. Every day we should be working to get out of here but we are all just paralyzed by the situation and also by the amount of care Samuel needs just to function.
I have done some preliminary calling to hospitals today. None of the main staff is there but I did get some initial answers. Swedish in Seattle is where we took Anna when she got RSV and had a terrible experience with them. They don't have Oncology and the referral line did not think anyone there would take Samuel and she also wasn't sure if they were taking new patients at all. Plus, he is medicaid so NO ONE wants that because they SUCK. Portland thinks that their GI department does anoplasty, so I will have to call back on Monday to see and I also got their admin dept to find out how many they actually do in a year. We shall see if anyone will even talk to me. My initial thought is that these people will say he is too complicated as well especially if I mention that we are trying to get to Cincy but being stopped by Medicaid. I will know more Monday on that. I am going to call the Medicaid office and talk to someone, whomever on Monday and go from there. The appeal process goes through two more people and also you can request a court hearing as well. Each person has to respond to you in ten days, so if we can overturn the decision in 10 days, fine, we should still be okay enough to go. But if it ends up taking longer, than that is a real problem. At any rate, if I can call them Monday and say that no one can take him, that should change things or at least I would think it would.
I emailed Dr. Levitt to get his opinion on this as things stand now. I have yet to hear back. I understand he is gone for the weekend...so nothing there until Monday either.
Nobody gets how much he has been through. Medical records will never tell the entire story.
The following are reasons cited by Medicaid which will allow them to grant a request for an exception to their rules.
The secretary of the department, or designee, authorizes department staff to request an exception to a rule in the Washington Administrative Code (WAC) for individual cases, except as noted in subsection (5) of this section, when:
The exception would not contradict a specific provision of federal law or state statute; and
The client's situation differs from the majority; and
It is in the interest of overall economy and the client's welfare; and
It increases opportunities for the client to function effectively; or
A client has an impairment or limitation that significantly interferes with the usual procedures required to determine eligibility and payment.
You know, I think they forgot to read their own rules in helping us qualify for exception. Either that or they think Samuel's situation is just normal. I just wonder if I am speaking to humans when I call or if they are just robots who see and hear only what they want to hear. I should e-mail them a video of how Samuel is here...but I don't think they could watch it for long. Their hearts of stone might crumble.
8/11/06
I received the x-rays from Children's today and they show Samuel had an ileus when we went to the ER. I am angry about that. Go there for help, get none.
As if that wasn't bad news enough, Medicaid denied Samuel service out of state claiming that ANY surgeon here can do it.
I am devastated, of course, we all are. We will appeal. But all this costs us is time, time Samuel doesn't have. His anus will just close up again, starting the vicious cycle.
Please pray for us. This is going to be a long weekend in which we can do nothing but stew.
8/10/06
Samuel has had a nice day today. He could eat food and he could poop. What more can a boy ask for? Well, his butt is still sore but healing. I can tell it has been a long time since we were all able to eat whatever we want when we want because we ate some things we haven't had in ages it seems and everyone pigged out. We were having to hide to eat, or wait until Samuel was sleeping to eat. How do you eat around someone who cannot and wants to? Well, if you are considerate, you just don't eat in front of them unless it is something they really hate.
Backing up, yesterday I called no one. They all called or e-mailed me. First the Dr. reviewing this case called to reassure me that they are indeed working on this. I resent my personal note to him with some x-rays and I think it lit a fire under them to get busy The note I sent last week must have gotten lost or thrown in the round file as he never got it until I e-mailed it to him. He told me I can call him anytime to ask questions about how it is going and is very nice. He told me he called Seattle again to find out where the records were and they said he might have them tomorrow, meaning today now. He told them that he wanted them yesterday, now two days ago. He doesn't want to go into another weekend without making a decision. I told him it took me most of an afternoon to read through my chart from last year and that was minus the takedown surgery and this year's mess. I just don't think they have a concept of how much is there. I also do not think they have a clue as to how complicated Samuel is and has been.
He informed me that they will not deny Samuel care, and will find us a place to go, but they are still looking into places closer which really means places they are contracted with so can pay less for services. So, it is still about money despite what he said about wanting to do what is best for Samuel. Stanford was mentioned. Who the heck is there? He also wanted to let me know that they asked for a statistical analysis from Cincinnati about how many surgeries they do, success, failure, etc. They are being absurd I think. So, Cincinnati did their part again today and cc'd me all the notes which I thought was VERY nice. Before I became a WAHM, I spent 10 years in medical billing and accounting so the parts we have done ourselves here calling and collecting things is just second nature to me. But I can tell that Cincinnati is not used to having help in calling and pestering. So it is nice to know who is doing what and I took today off from all of it again. I think that Medicaid will be hard pressed to find another surgeon who does 200 anoplasties a year. I don't see how they will be able to justify sending us anywhere else but to the best at this point. I told Cincinnati that I hoped they won't hold our stupid insurance against us when we get there. We are quite easy to deal with compared to their stupidity.
It seems clear to me that Medicaid has no clue who Cincinnati Children's even is or why a Colorectal service would be necessary. So I sent the Dr. their link with a note stating that Samuel's problem is not technically listed on their site since most people's rectums and anuses do not collapse and heal shut. I told him he would be hard pressed to find an Onc who would believe it. Ours sure was reluctant to. Most everyone else thinks we are nuts or confused when we mention it.
Note, this is still not approved, but I just don't see how they cannot approve it at this point. It won't be without a fight, I can tell you that. I have been lightly repacking my suitcase nevertheless.
Dr. Levitt sent them this today about what the surgery entails....
The goal of this procedure is to perform a formal anoplasty, remove the
scarred anal ring, and bring forward the normal healthy rectal mucosa,
so that a stricture does not form again. This involves circumferential
sutures placed in the mucocutaneous junction, and mobilizing full
thickness rectum until the scar is excised and the healthy rectum
reaches the perineum with no tension.
Well, this is not what our surgeon here was telling us he was going to do. He made it sound quite simple. There was no moving the rectal tissue forward to cover where the scar tissue was removed, etc. This is very good news and news to me. This means that perhaps he will have a better barrier against poop in the future and that skin mentioned to me as similar to a burn victim will be replaced with better tissue and also a mucus membrane again which he currently does not have. I have no intention of allowing anyone else to do this than the experts. Samuel has lost enough tissue already. So I am encouraged a bit today that Medicaid is taking this seriously enough to not want to keep us waiting. I did not tell them that we will have to wait another ten days for surgery anyway at this point. We will need to be there a few days early anyway for appts with whomever and the dreaded gut cleanout. I am also hoping they have a better way to deal with this than Seattle had. I will definitely be bringing it up because it will ruin any healing we might have on the outside.
Hopefully, we can get in as close to 8/20 as possible as we rarely get past the 4 week mark without the closing down starting. We are just so thankful for the reprieve for now. There is no better feeling than seeing Samuel happy because he can be more normal. You would be surprised at what he would eat since he hasn't been able to for awhile. He was willing to try some stuff he has never tried. He usually thinks things smell good, but refuses to get his mouth near them. We were actually able to go to the market without him stopping in the middle of the store to pick his butt. Now that is progress.
And as for me, yes I did sleep last night. I still feel exhausted mentally and know it ain't over til it's over. We have a small window of time to fix this before we wind up right back where we started. Seems there is always a timebomb.
Well, someone just says he made a "giganto loaf" .... um, in the toilet....so off I go. He is back in underwear after a month in diapers again. Thanks for your prayers and love.
