I wanted to first and foremost point out that April is National Donate Life Month, If you aren't a donor please take the time to educate yourself on the pros/cons of being one (click image for link)
I don't even know where to start about the last weeks events. What an emotional last few weeks it has been.
Since I last updated the journal I personally have had a Upper Endoscopy last Thursday and and CT Scan was just a few days ago (Monday). The endoscopy contradicted the Barium Swallow from week prior, which is exactly why they requested to put a visual on my internals of my stomach. The Endoscopy showed that I have ZERO Gastritis and no visible acid issues. I will say the Nexium I've been on has been working great for the acid issue from before. The endoscopy did show that my stomach was very small and had large nodular folds in it, which were biopsied as a precaution, and my stomach was somewhat "J" shaped. The doctors discussed and compared the tests that had been done and they all agreed I needed a CT Scan. The Endoscopy was an interesting experience, I literally don't recall a good portion of my day.
I arrived on Monday to clinic and the two surgeons advised me that they felt my stomach "probably" had adhered to my liver by the sounds of things and tests they've conducted to date. I was advised that to correct this issue I would need surgery again (a bit less intrusive but surgery none the less) and surgery could be as soon as next week. I was a bit bummed out to think I might have to do this all over again but at the same time also relieved to know they had a fix. To try and live this way forever would be a nightmare to be honest. I feel I'm fully prepared for whatever happens as a result of all of this but if they had the means to fix it I would be the first in line to sign up...this is all very uncomfortable to say the least. After clinic I was happy to hear they could get me into CT a few hours later. I made my way over to CT and was advised I needed to drink 16 fl. oz. of contrast on top of the IV contrast I would be getting as well. I chugged it down and was extremely uncomfortable but wanted to make sure they got what they needed. CT was done and over with and I figured I would hear from them sooner or later.
I didn't hear anything on Tuesday from my doc but I did hear from the chief of Transplant, he had called me to thank us for a little something we had done and to advise me he was aware of my situation and agreed I most likely had this side effect going on and I would hear from my surgeon ASAP (which he was unable to call b/c the team was in surgery with a transplant). I knew I wouldn't hear any definitive word that day b/c the focus is on the transplant patient and I know exactly how that goes.
The following day (Wednesday/Yesterday) I decided to call the surgeons office to hear if they had time to read my scan and to see what the plan was. As of this moment I had now gone 48hrs being told more-or-less I would need surgery as early as next week. I left a message for my surgeon and was called back by one of the assistants and advised my scan didn't show any adhesion and that my stomach was fine, that I should just keep taking my current Nexium and be sure to take the Gaviscon for the reflux, and to not stress as this can cause my issues as well. I was completely shocked and caught off guard...but that really doesn't even say it well enough, I felt blind sided and offended. Just 48hrs before I had 2 surgeons prepping me for surgery and even showed me scans of my problem area and how they would go fix it but now I'm being told over the phone that I have nothing wrong and to basically chew tums and fart (this is how I felt, not what was physically said to me). I had to step back for a second and ask if she was sure she was reading the right chart, person, scan, etc...as this was nothing that was said before. I got some push back from the assistant as I was re-advised that this was the doctors words and that she was just relaying to me. I said there is something physically wrong with my stomach, I can only fit approx 8oz every 6-8hrs and that the night before I actually threw up all my food. She again advised me that there is physically nothing wrong with my stomach, that none of my scans suggest any of that and that was that. I pressed on a bit more out of frustration and she let me know she would make an appointment with the surgeon for him to tell me the same stuff in person. I was setup for the following day (Today) to meet with my surgeon and hear it from the horses mouth so to speak.
I arrived at clinic and was nicely greeted by my surgeon and the assistant whom called me the day before. He quickly showed me my CT Scan and how it showed no adhesion, which I replied with "that is great as I really don't care to have surgery again and glad I don't have to". The surgeon told me that "he couldn't rule out that I don't need surgery, as my stomach is showing signs of issues and not working properly. That he can see there is a motility issue for sure". I was completely shocked to now hear this again, just 24hrs prior a spokesperson for him advised me that I didn't need surgery as "everything is fine". The surgeon advised me that he wishes to not dive into surgery just yet but rather try another medication for 2 weeks and see if it helps with getting my stomach working again. That I could have nerve damage which in time "should" go back to normal, that I might be having effects from anesthesia, or that I might by chance have a small adhesion somewhere that isn't being picked up on the CT Scan. He said if the meds don't work within 2 weeks he would more likely than not need to do surgery to take a look inside and see if they can get my stomach straightened out or just see if anything is in wrong placement or anything else that might/could of happened. He also advised me that I need to keep my Nuclear Gastric Emptying test for next week as this would help him more in his diagnosis. I really appreciated my surgeon's candor and him being straight forward, I really wish his assistant wouldn't have done what she did and would of just explained things a bit more like it truly is. So that's been my last week, the emotional roller coaster keeps on going and hopefully we get a step closer to a "fix" for my stomach, I'm optimistic the new med will work. Enough about me though, onto Dylan.
Today we got Dylan's labs and unfortunately his liver enzymes are up, platelets and white blood cells are down, and this has been going this way for 2 weeks in a row now. The other not so great thing is these liver enzymes have doubled in 2 weeks, we were hoping to see his labs better today and were hoping his higher labs last week were just a lab error but our luck was no such thing. Today they also tested Dylan for Ebstein-Barr Virus
(EBV) and he tested positive; this is a virus that 90%+ of adults will have in there life time and most kids by age of 5 have been exposed to it. In healthy people, its no big deal (most end up with mild cold like symptoms and the more severe get Mono), in transplant patients its a very bad thing and one that needs to be closely monitored as it can cause Post-transplant lymphoproliferative disorder
(PTLD), this can lead to certain cancers and must be monitored very diligently to ensure it does not progress to that. The hard thing about being a transplant patient and having EBV or CMV
is that while on immunosuppression your body can't fight the virus properly. There is this fine balance of lowering the rejection meds in order to give your body the chance to fight it off and get it to go dormant, often times this can result in having to completely remove the meds that prevent the liver from rejection. We knew this is something that would most likely happen in time but defiantly never even contemplated it less than 2 months post transplant. Dylan's virus level is at just about 3,000 copies. The transplant team will act on Monday with Dylan's new labs (if they are still elevated) and if it continues to trend upwards the team acts aggressively at 6,000-10,000 copies. For now we await to hear what Monday brings.
Today is such a hard day, this week is such a hard week, we feel so blessed to have Dylan doing so well but also kicked down by our various setbacks that can't be undone and the new challenges that lay ahead. I can't help but be jaded by this roller coaster ride our life is on and have the overwhelming feeling that its never going to end. Each day brings new hope but also new upsets...its a constant 2 steps forward and 1 back, then 1 step forward and 2 back. Life can be so unfair at times. ALL I WANT IS A BETTER LIFE FOR DYLAN, why...why does he have to endure so much and never catch a break. Just for once I wish for him to have a break and enjoy being a kid, a healthy kid.
Its been a little bit since we did a journal update, we apologize for this (we actually are having our home computer fixed and I'm writing this from work) but the main reason for holding off on the update is due to the back and forth we've been going through. We always like to have concrete info to give as an update, in an effort to spare those who read this from the merry-go-round that comes with the territory of this lifestyle we live.
First and foremost...Dylan is doing great, as of last week LPCH has moved Dylan to a 1x per week schedule (tomorrow being our first time going a full week, so tomorrows upcoming labs are nerve racking to say the least). It couldn't of come at a better time though, as Amber and I have been pretty drained driving back and forth and the early 4am starts and midnight closes are taxing on a person let alone a family. To say we're happy to see Dylan doing as well as he currently is would be an understatement. I know I can speak for Amber on this one that we never would of guessed being where we are just 6 weeks ago. Can you believe that? Its already been 6 weeks, time sure flies when the regimen is as tough as this one is. Dylan has yet to be able to come off the Prednisone but we are hopeful that tomorrow might bring a positive change on that matter. The only other issue that has come up is Dylan started on his antibiotic (Septra) and it has caused an allergic reaction on his skin, which he now can't have it, so we are addressing this in clinic tomorrow. But all-in-all he couldn't be in a better place in such a short amount of time, as of last thursday (last labs that were done) his Liver Function Tests (LFT's) were all normal and his GGT was still declining and only in the low 30's (this is one measure of rejection). The Prograf level was a bit low but they don't seem concerned as his liver and body are tolerating it. Tomorrow is a big day to hopefully still see that he is on track to this fantastic recovery he's been riding thus far. Its so hard to be overzealous, as I don't wish to jinx anything...things can change so quickly and we're just grateful for today and his health.
I myself on the other hand have been battling some issues, I guess I cant really say if they're minor or potentially major...but I think its just a minor set back in the whole scheme of things. Long story short, a little over 3 weeks ago I started to develop some major acid reflux and inability to eat a normal size meal or even a snack really; only being able to get about 8oz in me at a time. I had let it go for about a week and then called my surgeon's office. I was advised to switch medications from Protonics to Nexium and to give it a week then give a update. That was 2 weeks ago and I did as instructed, reporting back that I was not any better (I don't really feel any worse but by no means any better off than I was before). The docs set me up last Friday with a Barium Swallow
, this is a test that is used to see the inner workings of the GI tract and to see if there is any obstructions, perforations, and/or anything out of the norm. The test is done on a bed with a rather large digital X-Ray machine that records in real time...its amazing to watch how things function and its all live. The Barium drink itself was not too tasty but not all that bad either. The Radiologist who performed the procedure advised me that I have severe Gastritis
and the inner folds of my stomach lining is so inflamed that it "appears" to be covering the Pyloric Region
and is potentially causing a delayed response in the draining process of my stomach and causing this fullness/pain I have. It was very clear what he was talking about just by looking at it on the screen. I drank 2 full cups of the Barium and he said normally by the time you've taken your second gulp (not cup) that you can see it working its way into the small intestine. The whole time I was there I didn't see, nor did the Radiologist see any/adequate emptying of my stomach. So tomorrow I get to go for a upper endoscopy, they want to get a visual on my stomach and do a biopsy. I'm also on the schedule in two weeks for a Gastric Emptying Test
this is where they have me ingest a radioactive chemical and monitor over 24hrs how fast my stomach empties. The surgeon told me this is a known issue from this type of surgery, they say they even warned me of it before hand. Was that suppose to stop me? No way and it wouldn't of regardless.
Its been an interesting 1.5 weeks but I wouldn't change any of this that I got going in lieu of what Dylan's progress has been. I knew the risks when I volunteered for surgery and if this ends up being a lifetime issue, it for sure will be devastating but not as much so as potentially losing our son...The future for Dylan is on the up and up and I will leave my issues to the docs for now and hope that they get to the bottom of it. Its really no fun feeling/being this way everyday. As I've said, it could always be worse!
Dylan ER visit for allergic reaction (03.12.2011)
Less than 48 hrs ago we were giving an update on how great Dylan is and how happy we are on his progress. Well looks like we get to kick ourselves in the behind (and for those wondering this is typically why we wait 24 hrs or so to do a journal update, stuff just changes so quickly).
The semi-short explanation of what happened and for those who didn't know before, Dylan has anaphylaxis to Dairy and a severe peanut allergy.
Around 3:30 yesterday we went to a friends house for his birthday gathering. They had hors devours out and Dylan was hungry. Like always we looked over everything and made sure their was no dairy or nuts in what he was about to eat, furthermore he has had almost all of it before (same brands and everything). The only suspect item was smoked salmon, which ingredients listed nothing that Dylan couldn't have. We allowed him to eat the salmon and he loved it but approx 5-10 mins after eating it he got a runny nose, 15-20 mins his lips swelled up like a balloon; literally like 3-4x the size they normally are, maybe even more...it was insane. His cheeks got puffy, his eyes watery and we were beyond concerned. Amber immediately put a dose of Benadryl in him. I on the other hand jumped on the phone with his Kaiser GI doctor, Dr. Edward Rich MD
, Dr. Rich is an amazing man and a even better doctor. He is always available for us via phone and has been since we first met him. He truly is a special person to us and we are so grateful for the care that we get from him. I gave Dr. Rich the run down on what happened and my reasoning for calling Kaiser vs. Stanford was I felt we needed to communicate with our primary care doc first. Dr.Rich made quick conversation and gave me a run down as fast as he was doing the math in his head. Its amazing how smart this guy is, he literally figures dosages and converts lbs. to kilos faster than a chart and while he's doing it he sounds it all out so you get to hear his thought process...we're always amazed how fast he can do these things in his head. Even more so I know he was busy with family or a party of his own as I could hear he was out and about doing his personal life, after all it was a Saturday. So he says how much does he weigh, I say 46lbs and instantly its: "46 lbs is roughly 21 kilos", how many milligrams of Benadry was given (I replied with 1 dose = 12.5mgs), he replied with "give another dose immediately to make it 25mgs total". He then recommended a massive dose of steriods to be given, he again starts sounding it out. "He's 21 kilos, 21 kilos is allowed 1-2mgs of Prednisone per kilo, I recommend on the high side of doing 40mgs of Prednisone but you need to call Stanford to have them confirm with my recommendations on this. Also if he has the slightest issues in his breathing to use the Epi Pen (this is Epinephrine and it causes an adreline response to counteract the immune response) and get him to the ER right away". I thanked Dr. Rich and was on my way to calling Stanford.
I placed the call to Stanford and waited for the on-call transplant doctor to give me a call back. In addition around this time I emailed my cousin, who's son also has severe allergies and has had major issues getting it all under control. Luckily she has found this great Allergist/Dr. at Stanford whom she works closely with and there son is doing great. I as well let her know the run down and she forwarded it off to the doc. I got a call back from the transplant on call dr. and they advised verbatim what Dr. Rich advised but they wanted this done in the hospital, apparently after a allergic food reaction their can be a delayed reaction that comes 6-8hrs later. At this same time, I also got a call from my cousins kids doctor, she as well agreed with everything and that he should be seen in a hospital setting. So off we went to Kaiser ER, we quickly had to make a choice of which one because some of them just aren't the best equipped for stuff like this. We decided the one next to our house would be best, only issue was we were 45 mins away, as we weren't near home. So we made the trek North towards the ER.
We arrived at the ER and were immediately taken to the back, its sad when you walk into the ER and the nurse's recognize you b/c you've been there one to many times in the past. We again gave the run down, the docs recommendations and the on call ER doc said he would be more comfortable calling Stanford as this is something they never deal with (Pediatric kid with a liver transplant) and he just wanted to confirm he can do the course of action with no repercussions. He came back and said Stanford agreed and he went and got the steriods to administrator. Dylan was observed for a few hrs and then we were let go, as we could finish this up at home. He is now on 40mgs of Prednisone x 5 days. Its really disheartening b/c Stanford was going to remove his Prednisone on Monday/tomorrow (for those who don't know, this medicine is the devil as well...it such horrible stuff and at this level its amazing how fast you see negative changes, I hate this stuff. Don't get me wrong its an amazing drug but the side effects are just horrible).
We were advised that D could develop severe allergies post transplant but he had nothing too out of the norm. We religiously read labels and check for milk and nuts (known allergies to Dylan).
Today was scary, this is the first time the Epi Pen came out and almost got used...I never want to have to use that on Dylan, he has so much going on I just always held in my mind that after transplant life would get easier (after the hard parts of course)...maybe I'm not being realistic and that's what I get for being foolish.
How fair is all this stuff? As if having BA, liver transplant, and allergies isn't enough; now he gets to re-undergo testing all over again for what is most likely additional allergies now. The anti-rejection med is what is most likely causing this, Prograf is a horrific drug. Its amazing how it can suppress the immune system but it comes at a cost, this often times is severe allergies develop, headaches, skin cancer, liver cancer, hand tremors, insomnia, etc... Dylan already is showing signs of headaches, insomnia, hand tremors, and now of course more likely than not severe new allergies.
I mean it when I say look at your life, your loved ones, and be thankful for what you got. As cliche as it sounds, you could have our lives = not the easiest. Could it be better or worse? You bet, and were thankful that D is ours and we get the privelage to care for him but it still doesn't make any of this easy.
The week is coming to a close and what a long one it has been. The beginning of it started out with the typical routine of Monday morning labs and clinic visit in the afternoon. The only difference was we had moved home so we we're no longer 10 mins from the hopsital anymore. We got up bright and early on Monday. It takes approximately two hours to get to Lucile Packard, which means getting up at 4am and leaving the house by 5:15 to be at the lab by 7:30. Needless to say its a bit of a trek.
The doctor on call this week was Dr. William Berquist, MD
not only is he a great doctor, but he's also a really personable guy. At our clinic appointment they let us know how Dylan's labs are. At our visit prior to this the doctors were concerned with the level of Dylan's anti-rejection medication. Their concern was that it was too low (they want it between 8 and 10...Dylan was at 6.6) so we added half a milliliter (1/4 of a milligram) of Prograf to bring it up to a good level. As we sat waiting for a room our transplant coordinator came out to let us know it was even lower than before.
Saying we were frustrated would be putting it mildly. There is a lot of fine tuning and tweaking to get this to a good level. Now the question, why? Why on earth would the level go down with a higher dose? Amber and I both asked if it had something to do with the time we give Dylan his medicine, but were told it was not really going to make a difference if we were giving it thirty minutes to an hour earlier than before, as they give a 1 hour variance anyways. Despite the issue with his Prograf levels his labs looked really good. All his liver function tests were normal and trending down faster than anyone could have predicted. The doctor started talking about changing doses of his Prograf to try and get it to a better level and I suggested that we see if the level goes up by us just switching the time we give it to him (medication level must be checked twelve hours after the last dose). We were certain that was the only thing that had changed with the last two lab draws. I am sure we have mentioned before, but the medication has very strict rules about the way it is given, there is no food/drink for an hour before or an hour after taking it. It makes it difficult for dinner if he can't eat from seven to nine and we are trying to get it during a better time for when he returns to school. Since Dylan's labs were so good the doctor agreed to let us try a little experiment and move the Prograf dose back to eight. This will make the lab draw as close to twelve hours after the last dose as possible. We then had dinner with our family that live in the area and then made the drive home. What a long day it had been.
Thursday rolled around and we made our way back to the life we are attempting to adjust to. The labs were again taken and we made our way to clinic later in the afternoon. We were again met by our transplant coordinator whom cheerfully let us know that Dylan's Prograf level had come back within range and was now at 9.2; to say we were elated would be an understatement, we were so happy to know that what we thought was going on ended up being correct, and furthermore were extremely happy that Dr. Berquist was willing to let us do this experiment and trust what we were thinking. It really goes to show how great these docs at LPCH/Stanford are. It could of been very easy for him to say no and continue adding more meds to combat what the labs were showing. Over the years Amber and I have learned that sometimes you have to think outside the box and really dig deep and trust your instincts. If we hadn't done this throughout the years I don't believe D-man would be here. I strongly believe in mother's intuition and I feel through this process (like anyone going through life/death hard times) it forces you to be this way.
As of this moment Dylan is the healthiest he has ever been in his life. Literally all his labs were normal last lab draw and the docs seem to be really happy with his progress. Dylan will remain on a 2x a week schedule for the remainder of the month. As long as his labs stay to this trend, they will start with removing his Prednisone (steriod) next week, which means Dylan is one step closer to going back to school. Dylan did start a new med this week though, which is Bactrim (antibiotic) and this will remain for 1 full year; a bad thing about this medicine is Amber is deathly allergic to it (Sulfa based drugs cause anaphylaxis in her) but on the flip side, its only for a year.
I myself have been dealing with some ups/downs, I feel like such a weak person saying that but its true. I started back at work full time this week and to say its taking a toll on me is an understatement. It feels good to be back to the ole grind but at the same time I just don't have the energy level I did before. I'm also battling insomnia even more so now, as I think the stress level is not helping with anything. I also have been dealing with some fairly decent pain and major acid reflux issues. Those who know me know I have a "bad stomach" but this issue now is totally different. I feel this overwhelming amount of acid in the back of my throat and churning in my guts, one morning I even threw up bile...its really uncomfortable and I called the docs to see what might be going on or if this is normal. They took me off the Protonics they had prescribed and now have me on Nexium, which is another type of drug to treat acid reflux. I was advised if my symptoms are not better within 7 days that they would need to go take a look and see what's going on. I'm really hoping the meds help, I really don't want to deal with any complications and not looking forward to a endoscope or something of that nature. All-in-all I'm really grateful for where we are with everything and I'm doing my best to keep my head up in regards to my own recovery. Folks keep telling me that I need to take it easy, that I shouldn't be working, and that I need rest above all else. I agree with most but I had to return back to work and resume life and make money again. Just because extraordinary circumstances have been put on us doesn't make bills stop and the rest of the world stop revolving...just like everything else, we're doing the best we can with what we got and we're just trying to find that fine balance between it all.
Thank you everyone for your continued support of our family, we are far from over with everything that is going on, and we're so grateful for where Dylan is at with his recovery...all we can do is be hopeful and pray that this trend continues, as we know in a drop of a hat how fast life can change in these kids like Dylan.
That is right ladies and gentleman we are home. Noah and I had talked this over amongst ourselves and then again with the transplant team and decided it was time to go home. Dylan is still on a twice weekly schedule and they are still tweaking the doses of medication for him, but the doctors told us they don't care where we sleep as long as we come back to Stanford for labs and clinic. I should mention that our accommodations were far from uncomfortable. We were staying with very generous family members who live near the hospital and it was so comforting to be with them during such a huge milestone in our lives. We will never be able to thank them the way we want to or should. They've helped us out tremendously. So yesterday we packed up most of our belongings (Dylan acquired a lot of "guilt gifts" while in the hospital and it will take another load to get it all home) and made the drive home. We did make one pit stop before we went home; picking up the dogs.
Our dear friends have had our dogs for the past month. We tried and tried to talk them out of it but they insisted, saying it was nothing comapred to what we were going to go through. It takes very special people to take on a task like that and that's just what they are. We knew that our dogs were in great hands and they would be treated like we would treat them, if not better. Not having to worry about the dogs or where they were was so nice. It was a huge weight lifted off our shoulders, even Dylan was happy to know that his friend would be taking care of them and not a stranger. We met up and had a quick lunch and then drove home. The car was packed ceiling high and had live animals everywhere. It must have been a site to see but we didn't care...we were going HOME.
Now that we are home we are settling in and starting a more permanent routine. I removed all of Dylan's many pre-transplant medications and replaced them with the many post-transplant medications. I have to say that it was quite a moment for me. Those medications kept Dylan alive for so long. It was like saying goodbye to an old friend. At the same time knowing he no longer needed them felt fantastic. We went to Dylan's favorite restaurant for dinner last night. We had not been there for quite some time. We are there so frequently that they know us by name and were well aware of where we were the past month. Dylan throughly enjoyed his carburetter roll (shrimp tempura and avocado) with no seaweed. He ate every last bit. It was the perfect end to his homecoming.
As I had mentioned before Dylan is still having multiple visits a week and constant changing of medication dosages. On Thursday was had another scary moment. Not nearly was bad as past events, but pretty unnerving. One of the lab values we keep a close eye on is platelet level. Platelets help make up the red blood cells and keep the blood "sticky" to help with clotting. Dylan's have been higher than they ever, making their way up to the three hundred mark. His platelets were a big issue pre-transplant due to his huge spleen, sitting around seventy. Last week they started dropping again; going from about three hundred down to a hundred and fifty. The doctor had feared that Dylan's portal vein had clotted off. This was not the same blood vessel we had issues with before. This was an entirely new issue and just as serious. We were sent for an emergency ultrasound at the hospital to look at all the blood vessels. I was happy that our tech was a seasoned veteran. She said she had been doing ultrasounds for over twenty-four years. She quickly and efficiently looked around taking wavelength readings on all the blood vessels and then we were on our way.
We were left to worry for what seemed like forever, but did receive word that the preliminary results showed Dylan's portal vein was wide open and had correct directional flow (a side note...they still can not find Dylan's hepatic artery on ultrasound. It is way too small.) Phew! We still do not know what caused his drop in platelets. I am hoping that is is just a lab error or something minor that will correct itself. We will have to keep a close eye on him. Dylan's labs from Thursday also showed that his Prograf (immunosupression medication) levels were below target range. We had just upped Dylan's dosage the week before and brought it to a good level so it was concerning that it had dropped again. At the point where Dylan is post transplant they like to keep his Prograf levels between 8.0 and 10.0. Dylan's new level was 6.4, far too low to keep his new liver happy. We upped his dose again to see if it brings it to an acceptable range. For now we get to wait and see what Monday brings. An entire weekend of worry and stress. Will his platelets be stable? Will his Prograf level be where the doctors are happy with it? These are the new stresses that we have, but I will take these over the old ones any day.
* We have kept the names of our family and friends out of the posts to keep some privacy for them. I am sure they know who I am talking about. Please know that what you have done for us will never be forgotten and we are forever in debt to you. Thank you from the bottom of our hearts!
"I fart more now because I have Daddy's liver" -Dylan age 5
Three weeks ago I could not have imagined being where we are now. Yesterday was a clinic day for Dylan. We are still currently on a twice weekly schedule. Every Monday and Thursday we have labs drawn first thing in the morning with clinic in the afternoon. The phlebotomist has been having a very hard time getting blood from Dylan lately. His veins have been beat up the last few weeks and have had no time to recover. We have resorted to using hand veins but I think our time is limited with them. Once we go to a weekly schedule everything will have more time to recover in between draws. This should make getting a sample much easier.
All of the draws are necessary at this point; a necessary evil. The doctors are closly monitoring his numbers making sure his liver is as happy as it should be. Dylan did not have bad labs prior to transplant. The limited amount "healthy" tissue mixed in with all the cirrhotic tissue gave us good lab values despite the liver being riddled with disease. There is something to be said about seeing the labs all dropping into normal ranges now and knowing that the liver inside my little boy is healthy. I can honestly say that I was never at ease seeing his labs before. I always knew that even though they we normal that his disease was far worse than what was being represented. The true test for me now is too look at my son and SEE how healthy he is. His eyes are bright white and no longer sunken into his head. His skin is soft and he no longer has the broken blood vessels on his cheeks. The big one for me...I can't see his swollen spleen anymore! All of this and his labs, with the exception of a few, were normal yesterday. The labs are dropping and dropping really fast. If everything continues to go smoothly we should be home sooner than we expected.
When we started this process we were told that we would need to stay locally for a minimum of six to eight weeks. This was to ensure that if there was any issue or some type of emergency that we would be minutes from the hospital and immediate care. I don't want to jinx our current situation but we have had a relatively smooth road. Dylan has had his issues with side effects of medications (night sweats, diarrhea, and shaky hands) but all in all it has been manageable. Maybe it is that our life prior to transplant was harder that I thought. At clinic yesterday we were told Dylan could return to school as soon as the steroid he is taking is discontinued. We have already dropped the dosage on this medication twice now. We are in the process of weaning him off. This means that in a matter of a couple weeks Dylan could be going back to school.
School used to be an area of great anxiety and concern for me. This was even more so after his GI bleed in October last year. There was a constant worry that another bleed could happen while he was there and away from me. To be able to send him to school and not fear anything terrible will happen will be wonderful. We are doing a bunch of school work here while Dylan recovers. Trying to make sure he stays up to speed with the other kids in his class. Dylan speaks of school everyday. He talks about his friends like he saw them yesterday. He reminds me that I am not his teacher, I let him know I am more like a substitute teacher. We will also be enrolling Dylan in a Kinder academy that is ran by his teacher. This is a five week summer program that I hope will help him to be at the same level with his peers for the beginning of first grade. Noah and I want to ensure that he stays with the friends he has already made throughout his school years.
On a lighter note we had the pleasure of meeting a fellow liver family. For the past five years I have been actively involved in an internet forum called Liver Families
. Most people would read the information on this site and say it is depressing. For me, it is my saving grace. It was a place I can go and seek refuge with people who truly understand what we go through because they live it too. I have never met another liver family in person, but I know each of these kids as if they were mine. At any moment I can tell you what phase in the disease the children are at and how they are doing. I grieve with the families and celebrate with them too. We are one big family spread all over the world brought together for one reason, liver disease in children. Yesterday I met Luca and his parents. What a beautiful little boy. I am a bit bias when it comes to liver babies, but he was beautiful. Luca was recently transplanted in early December. Our paths crossed then but we didn't know it yet. There was an appointment that was canceled for us due to an emergency transplant the night before...that transplant was Luca. I am hoping we can meet up again and spend a little more time together. It was so special to meet them.
Noah has been dealing with some type of infection. He is on antibiotics, but the doctors feel it may be viral. His poor body just can't fight things while it is trying to repair his liver. He is run down and stressed. I know he wants to return to work but I fear if he does too soon he will only set himself back further. Again, Noah is not grasping the severity of what was done to him. He needs to be focused on healing and feeling better, not work and other areas of stress for him. My husband is a strong man. I have realized that more each day while we go through this. He has had a lot of pain to deal with and his recovery has been slower than Dylan's but he would do it again tomorrow if we needed to. It speaks volumes as to what kind of a person he is. I am so fortunate to be married to him. I think all in all we are moving in the right direction. The future is bright for us, I can feel it. I look forward to a year from now when we are looking back at this time as just a memory of what happened and Dylan is stronger than ever.
I want to add that Toast restaurant in Novato, Ca is running a dine and donate today for Dylan. Twenty percent of all proceeds will be donated to Dylan's transplant fund. We appreciate the wonderful support we have received from the community. A big thank you to Shahram Bijan, the owner, and our friends Nicole and Mike Garcia (the amazing Chef) who made this possible.