So, that being said my game plan is to just continue taking it one day at a time. That's all we can do. Thank you for checking in on little Dylan.
-Amber
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Dylan was seen by his transplant surgeon at Stanford on the 17th of this month. He was seen there 4 months ago and at that time we were warned that Dylan could face transplant as early as December of this year. Well that was not the case this time. Dylan's surgeon informed us that Dylan is doing FANTASTIC and that he could make it like this until he is 20.
So, that being said my game plan is to just continue taking it one day at a time. That's all we can do. Thank you for checking in on little Dylan. -Amber
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Everything has been some what quiet over here. Dylan is "stable" and continues to grow well. We are meeting with Stanford in November for further assessment. We will update then. Thanks for checking in on our little guy.
-Amber Today we met with Dylan's surgeon. Last December was the first time meeting him. At that time he estimated when he thought Dylan would need his transplant. His estimation was 1-2 years, but more likely closer to one year. Today we asked him if he felt that his last estimation was still true. He said, after feeling Dylan's tummy, that he felt Dylan only had "months" before he would need transplant. Dylan's liver is hard and has many nodules present by feel. Although his labs are steady the doctors all feel that it is only a matter of time and that a transplant is, no matter what, in his future. I was a little shocked by the whole thing. We have been told by his GI that it is his labs that will determine when we transplant. Dylan's surgeon informed us today that since Noah can donate, his transplant becomes more of an elective surgery. Meaning we won't have to wait on the list, but of course we will still be listed. It is a scary time right now, but we do have peace of mind that we have a liver.
-Amber Hello everyone... Well it has been awhile. Since our last post Dylan was seen by Stanford. The appointment went well. We started Noah's living related donor work up. Dylan's doctor has informed us that Dylan most likely has hepatic encephalopathy. This is what is causing his mood changes and what is making him see things that are not there. It is caused by his liver not filtering out the toxins. These toxins then start to, for lack of better words, poison the brain. So we are staying on the increased dose of meds. This makes for some interesting diaper changes. We have also increased his Actigall and Rifampin. Both of these help with itching.
Okay now for the bad news... Noah will not be able to be a living donor. Not unless we become incredibly wealthy. Noah is un-insurable due to a previously diagnosed heart condition. Now keep in mind that the heart condition has not been replicated or confirmed by any other doctor. It was a lone incident. Nonetheless, he is not able to have insurance without group coverage. It is the policy of Stanford that a living donor must be covered with insurance or "privately insured". So where does that leave us? I imagine that I am the next potential donor. So if things can not be sorted out with Noah, they will need to start a work up on me. We are upset by this but there is not much we can do. We are still waiting to hear back from Stanford as to what our next step should be. I am not going to let this stop the process for Dylan though. -Amber Today was another follow up appointment with Stanford. Wanted to keep everoyne posted with what was going on. Dylan’s doctor told us that "his disease is progressing, but there is nothing too serious going on". Basically it means that we will continue to watch him closely.
What we will be watching: - ammonia levels/encephalopathy: whether his symptoms suggest high ammonia even without the numbers being that high, or high ammonia even without symptoms. These are both signs of decreasing liver function. - Platelet levels: Due to what Dylan has his spleen is very large. As his spleen gets larger it collects platelets and other blood cells almost like a net. This can lead to bleeding disorders. - Portal hypertension: With the scar tissue building up, Dylan has an increased risk to "bleed out" due to back pressure. - Other liver enzymes and tests elevated: Dylan has lab draws every month to monitor these. So far so good for Dylan. - weight gain and growth: They way they put it for us is that "sick" kids don’t grow. The theroy is that if he continues to stay in his growth curve we are doing good. Again this is monitored every month. Thanks to everyone for all the support. We will continue to keep you posted. -Noah It is not very often I get to post happy news about Dylan but today I can. Dylan's scare with elevated ammonia had me very concerned the past few weeks, but we now have it under control. His numbers were not that high but now they are completly within the normal range. Yipee! We meet with Standford on Monday we will keep you posted.
-Amber It has been awhile since our last update, so here it goes...Dylan is doing okay. We have been doing blood glucose checks at the request of Stanford to monitor what we think may be hypoglycemia. Dylan's numbers are not too low, but he is suffering from symptoms when they do drop. For example, sweating, shaking, irritable and pretty much just demanding food or chocolate milk. I have started giving him a slightly different diet. I found that he can have almonds with out any allergy, so I give him those and dried fruit as well. Just things that will sit in his tummy longer to avoid having his numbers crash. We have been told that this is directly related to Dylan's liver. When the liver is sick, like Dylan's is, it does not store back up glucose. So when Dylan uses the energy from what he ate then he is OUT. Dylan will meet an new doctor pretty soon. He has an appointment with the endocrinologist. Also Dylan is suffering from hepatic encephalopathy, we think. It is hard to tell since his ammonia number is not all that high. Basically his liver is getting even sicker. It is having a hard time converting his ammonia into urea. It starts to build up in his blood and travels to his brain. He is not eating very well and is very cranky. He has been on medication to help this, but his dose wasn't cutting it. So they have upped one medication, neomycin (10ml 4x a day) and re-started lactulose (10 ml 2x a day). I was recently at the mall with Dylan and he completly freaked out on me. He told me to make the monsters go away. Climed out of his stroller and started screaming. There were no monsters. So I thought it was his blood sugar, but his number was 77. That is a little low but nothing bad. Dylan's heptologist at Stanford thinks that his ammonia caused the episode. We are scheduled to see Stanford on 02/04/08 and Dylan's GI on the 11th. I guess that is pretty much it. We will let you know how it goes with the doctors.
-Amber Just another day here with Dylan. We are now monitoring Dylan at home for low glucose levels. He seems to be showing signs of hypoglycemia. The docs are now sending us to an endocrinologist for Dylan to be evaluated. I guess they will help determine what the root of this is. I have altered what he is eating to prevent dips in the gluscoes levels which is difficult with his food allergies. Nothing we can't handle though.
-Amber Today we went to our well anticipated appointment with Dr. Carlos Esquivel. The appointment went as well as can be expected, Dr. Esquivel was a very professional and very straight forward individual. I finally feel as if my questions have been addressed and answered entirely. With that being said, I'm also very sad to learn that Dylan, as well as us, are going to embark on a very rough road and path from here on out. I don't feel as if the docs gave me any surprises but coming from a parent of a kid with a disease such as this, I've always held out hope...hope that our kid will be that miracle child that will pull through, that he will some how some way make it without having to be like the rest of these unfortunate kids who have to go down this brutal path of transplant.
One of the major things I learned today was that post transplant life may not be all that great, that it may not be the end all be all to this disease, but rather just another phase of it. It saddens me to learn of all the side effects that are related with post transplant children. I can honestly say that I assumed that once transplanted that the slew of drugs Dylan will need to be on will not be all that bad. But quite the contrary, the doc informed us that the medicine to give Dylan a second chance at maintaining life due in fact have very serious and at times deadly side effects. Call it ignorance or just us never diving into the next step that deeply, but this was very hard to take. The final meeting today was actually a conference with Dr. Esquivel, Dr. Concepcion, and Dr. Cox. This meeting was to ensure that all parties involved are on the same page as to Dylan's care. All 3 docs agreed that Dylan will be going down this very rough road in due time but as to what time they could not guarantee. They did estimate Dylan will most likely need transplant within the next 1-2 years, but were leaning towards the next year or so...BUT again could not say for sure. Seeing that Dylan's medical needs are going to be coming up sooner rather than later, they have decided to start the preliminary work up on me for living related transplant donor. All-In-All i'm very grateful to the team of docs today, as today was as much positive as it was negative. I'm glad to get answer's to my questions, even though the answer's make this whole ordeal much much more real...I know it sounds silly, this has been real the whole time but when you hear a doc talk about quality of life and post transplant life vs. the potential for death and what not, it's just a very heart wrenching thing to take in. I know in my heart that we have to be strong for our little boy. I just can't help but think of the what if's....I could not live my life without my little boy, he completes my life and makes it worth every breath I take. I don't even remember my life without him -Noah Copied and pasted from Liver Familes.
Well the appointment was frustrating to say the least. When the appointment was set up we were told that Stanford had spoken with Dylan's Kaiser doctors and that everyone agreed that it was time to move forward to get Dylan listed inorder to start the work up on Noah. We were told that we were going to meet with the surgeon. When we arrived at Stanford the tx nurse said she would be back with the surgeon and his fellow. When they came back it was just his fellow. I knew things were not going to go well. The fellow began by getting the normal information; Dylan's meds, background, current symptoms. He then proceeded to go over with us stats on success of the Kasai procedure and told us that Dylan may even make it until he was in his 20's before needing his transplant. Told us that his labs were great and his other symptoms seemed like they were under control. At this point I got VERY upset. We had already discused with the surgeon that Dylan had a max of 2 years before he would need one and since then Dylan has had cholangitis and his bile salts are elevated again. As far as his symptoms being "under control". My husband and I itch Dylan to sleep EVERY night. He itches all day. He has scratches all over his body. He can't breath. Whether that be his asthma or lack of lung capacity is still to be determined. I know that despite every effort with albuterol, qvar, and pulmicort he still get out of breath just moving around. As I started to cry this "doctor" looked at me and told me I needed to relax. RELAX? This is my son. His life. His quality of life. I have every right to be upset when he is obvioulsy discounting my son, his condition, and his symptoms. He then proceeded to tell us that one out every ten babies going through transplant die on the table. I know these stats are correct. I know this happens, but what irritates me is that I seriously doubt that if Dylan needed a transplant tomorrow he would be giving me those same stats. In that case the glass would be half full. He also said that we would be trading one set of problems for another. That is obvious. It was apparent to me that he was attempting to scare us out of tx. We have never pushhed for a tx. However, I will not let my son be ignored or fall through the cracks. I will not my son get to the point that he needs a tx yesterday. I will do everything in my power to avoid that ( I know sometimes it can't be avoided). I stopped talking and let my husband finish things up. Needless to say the surgeon never came in. The fellow left and the nurse came back in. She informed us that the surgeon left due to a family emergency. This is the second appt. where we were supposed to see him and he wasn't there. The second appt. where an intern/fellow has been the one gathering info on my son. The last time the intern tried to diagnose dylan's itching as eczema and not liver related. He was ten feet from Dylan. Never got any closer. The redness on Dylan's cheeks is from broken blood vessels and in no way is dry, rough or scaley. When the nurse came back she said she would have us back in two weeks to meet with the surgeon and that they would be discussing Dylan at their weekly meeting on Friday. Then that was it. I have NO issue with interns/fellows being in the room and watching and learning. My issue is when they come in and act as if they are THE doctor. So I guess we will see. I know Dylan "Isn't that bad" and "They've seen worse". His belly "could be bigger" and his liver "could be harder". What they don't seem to grasp very well is that for that to happen Dylan will get more sick. Be worse off and they will hear me kick and scream the entire time. I don't want Dylan transplanted tomorrow. I don't want it 6 months from now. I just want to be ready. I want to know Noah is a match and if he isn't I want to know who is. I need to be prepared. They have not seen the last of me. I will not go down with out a fight. -Amber |
Our Journal...The Journal section of the site will be kept up to date with Amber and Noah's thoughts, feelings, and of course hopes...Thanks for taking the time to read and please feel free to comment. Archives
February 2024
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