Dylan W Levy
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Cautiously Moving Forward

4/15/2011

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The week is finally over.  All week long I have had Dylan's EBV levels in the back of my head, so when Thursday rolled around I was more than ready to get it over with. We made the two hour trek down to Palo Alto and arrived at our usual time. Unfortunately, we were not the first to get there. There were two people ahead of us and the lab seemed to be short staffed making it an even longer wait. After about a forty five minute wait it was finally Dylan's turn. It amazes me how much Dylan endures. The little guy had not had anything to eat or drink since the night before, he taken from his bed before the sun came up, thrown in a cold car and then driven for two plus hours. Then he has to wait almost another whole hour just to get a needle jabbed into his arm. Not one complaint from him; nothing. He takes it all and just keeps smiling and laughing. I learn so much from him everyday. I know that there are a lot of children like Dylan out there and some who have it far worse but I am sure they are the same way. They just keep smiling and enjoying the life they have. It is a beautiful thing. 

After labs were completed and we fed Dylan we made our way to the Stanford side as Noah had another follow up appointment with his surgeon. The surgeon's assistant came into meet with us and go over the results from Noah's gastric swallow study. She let us know that it looked like the medication was working since Noah's results were normal. We had been warned by the doctor last week that the results from this test would not be truly accurate since Noah had already started taking the medication to reverse the issue. Well, she was right. The test did not show anything abnormal. I am certain that this is aggravating to Noah. He still feels terrible and knows there is something wrong but there is never any proof of it but for now he is going to continue taking the medication (as it does help some when he takes it) for awhile longer and see if he can get any more relief from it. The doctor had mentioned that if the medication stops working or it does not continue to get better that he will need an additional surgery. They will go in and attach another portion of his intestines to his stomach to allow for more efficient emptying. I pray it does not come to that as it does not sound like an easy procedure. I guess only time will tell. 

Yesterday while waiting for Noah's appointment I noticed that Dylan had a bald spot on his head. At the risk of sounding vain...it made me sick to my stomach. I know this is a new development as he has had two haircuts since transplant and I did not notice it before. Why is my son's hair falling out? He has dealt with so much already and now he has this too. As of right now it is a small spot about the size of a dime. It is hidden pretty well with the rest of his hair, but I know kids can be mean and Dylan is just really sensitive to begin with. It was definitely a question for the transplant team.

It finally came time for Dylan's appointment and answers to all of our questions. It amazes me how much things change from week to week and how there is always something to talk about. The situation for Dylan changes so frequently and so fast that even just seven days later there is something new to go over. I look forward to the day when we have nothing to talk about. First off, Dylan's EBV came down slightly. It is still a positive result but dropped about 700 copies from two weeks ago. This isn't much of a difference but it is not higher which makes me a very happy momma. During the doctor's physical exam he noticed that Dylan's lymph nodes are swollen a bit. This is normal with any viral infection, but the concern is that if it is related to the EBV and he stays chronically infected with it that is can turn into the PTLD or worse lymphoma. I am confident that he is in good hands though and they have a very close eye on Dylan. Dylan's liver tests remain elevated but his GGT (an indicator of rejection/inflammation) has continued to drop with every test. The doctors are very happy with his labs. Even the Prograf dropped some more and is in the range we are looking for.  We did ask the doctors about the hair loss and they didn't seem to have much insight on what the cause could be. I however, have done my own research through my fellow liver moms and have found that some of the kids have hair loss and that it does grow back slowly. The best I can explain it is that is similar to the hair loss chemo patients get. I just hope it does not get worse before it gets better. 

The biggest news of the day came as a bit of a shock. Dylan's tape on his bile catheter had come loose. We had planned on having them apply more glue to keep it secure for the next three weeks (it is supposed to be in for three months total), but after our coordinator took a look at it she called the surgeon to see if it was okay to remove it early. The surgeon felt that it would be fine to take it out. Dylan did not like the idea of this. He started to protest as he feared it would hurt coming out. He cried with tears and all, but before he knew it she had taken it out. His tears of fear quickly turned into tears of joy and elation. He literally almost jumped off the table he was so excited. I have never seen him do this before, it was hysterical.

Dylan has been moved to clinic every two weeks and labs done weekly at our LOCAL lab! Thank you God...That will make life so much easier. We will start having labs drawn at out local Kaiser and then faxed over to LPCH for clinic the next day. It was encouraging for me that despite the issues with the EBV and labs that the feel confident enough to let him go two weeks between visits. I am thrilled to say the least. Dylan will be able to see his regular phlebotomist, who he loves dearly and he won't have to leave the house before dawn anymore. We saw Dylan's Kaiser GI doctor today. It had been about two months since Dylan has seen him. He said Dylan looked great and that his liver and spleen are both tucked under his ribs like they should be. That is a huge relief to us. It one less thing for us to worry about. Before transplant Dylan's spleen was so big it was at risk for rupture and he was not allowed to play the way he would like to. This happened just in time as Dylan is going back to school on Monday! 

-Amber



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One Step Forward

4/12/2011

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I can not believe it has already been another week. I try to get updates out frequently but life just seems to get in the way. I am also desperately trying to get life back to normal...well as normal as possible.  So I apologize for the lag between them and thank everyone who is still reading and keeping our little guy in your thoughts. 

Last week started off with another trip to Stanford/LPCH. Monday we began with our usual set of lab work for Dylan. We have been trying to be the first there in the morning to prevent a long wait in the waiting room. All of these labs have to be done with nothing to eat or drink for a minimum of twelve hours before. Then the Prograf is given and then Dylan waits another hour before he is able to eat. This is a long wait for a little guy who, for once in his life, is eating like he should be. It was slightly different on Monday though. After labs Dylan was admitted into the hospital's short stay unit for inhaled Pentamidine. 

Dylan has developed an allergy to the antibiotic we were giving him. The antibiotics are given to prevent Pneumocystis Pneumonia (PCP). With a suppressed immune system Dylan is very prone to illnesses of this nature, so for the first year post transplant every effort is made prevent them. With this new medication allergy though we are now forced to give a different medication in an inhaled form, Pentamidine. Since the age of ten months old Dylan has suffered from terrible asthma. Just one more hurdle for our little guy. With his history of asthma, a prophylactic treatment of albuterol was given. This is the same medication we give him for wheezing. His usual dose is two puffs of the inhaler every 4 hours. The dose given to him Monday was twenty puffs...yes I said twenty. I was beyond concerned with the effects that this can have. Anyone who has ever had to use albuterol knows that the racing heart, jittery feeling, and hyper activity that comes with it and we just multiplied the usual dose by ten. Noah, the respiratory specialist, and I all had to wear masks (this medication can cause breathing problems). We were warned it is extremely foul tasting and that it burns the mucus membranes going in. Needless to say Dylan was NOT happy. Poor guy was screaming and did not want to do it, but he was a trooper. With only a couple breaks for tears; he finished it. The good news is he only has to do this once a month and we were told each time gets better. When we were done we made our way to the cafeteria for some food while we waited for Dylan's clinic appointment. 

Our clinic appointment did present with quite a shock. Dylan's Prograf (anti-rejection medication) levels were high. They had gone from his normal range of six to almost fifteen. This is the level that shows us how much medication is in his system and how suppressed his system is. Our goal range for Dylan is six to eight, so a level of nearly fifteen is way too high. This can also cause a jump in liver function tests. First on the agenda was to figure out why his levels were so off. Could it be his digestive system is working better and he is absorbing more? Maybe. Could it be that it was given slightly different than normal? Most likely not; Noah and I are very strict with the way we give the medications. Could it be that he was given the generic medication instead of the brand name? Yes...this is the most likely culprit. I know that most medications are the same in brand name versus generic, but this is not the case with Prograf. There are a lot of inconsistencies with levels when the patient is on the generic name. We decided to refill Dylan's prescription and make sure that it was in fact brand name Prograf and drop his dose down too. Then we would come back Thursday for another appointment and new set of labs. At that time we would also recheck his EBV levels since his liver enzymes were still elevated. So we were on our way home and honestly little disappointed with the day.

Thursday came all too fast, but we were off to Palo Alto again. Not only did Dylan have an appointment but Noah also had a nuclear study to do. It was going to be a very busy day for sure. When we arrived we had Dylan's labs done and then drove to the Stanford side for Noah's testing. With us we brought egg beaters, white bread and jam. That was to be Noah's breakfast all mixed with radioactive dye, sounds delicious I know. 
This test is to help the doctor’s figure out what has been causing all of Noah's stomach issues. They feel there may be some nerve damage that is causing his delay in processing of his food. It is extremely uncomfortable for him and has gotten to the point where the food is coming back up undigested. I feel so badly for him and just hope this is not permanent and goes away very soon. 

Noah's test was scheduled for four hours. They took him back at 8:30 and the first part was about an hour long. When Noah went back I took Dylan to get some breakfast. We came back and waited in the waiting room for Noah since he would have breaks in between each scan. It was about a twenty minute scan every hour just to make sure everything was moving the way it should be and to see how long it took for the food to move. Noah had been on Reglan for about a week at this point so the test may not show how bad it was, but it will give us a good base line. The doctor Noah spoke with told him he will have to have this repeated for several months...this will not happen as Noah's insurance coverage under Dylan's policy ends very soon. I am hoping for answers from this test and a way to fix it as well before we run out of time with the insurance. I am hoping soon Noah will not be in constant discomfort and able to eat normally again. Dylan and I left before Noah's last scan to get to his clinic appointment. 

Noah met up with us at Dylan's appointment. I was actually pretty anxious about this one. I just wanted to see where his labs sat and if we had made the right decision about changing the medication dosage and refilling to brand name. Drum roll please...His Prograf level had dropped down to nine!! This made my week. It was still higher than the target range but a much more acceptable number. The doctors felt that with a minor adjustment it could be where we want it soon. We decided to lower Dylan's dose again. We still don't have results for the EBV levels but we want to give his body a chance to fight it off so we are going down further with the medicine to lower his suppression levels. The hope is his body will then have a better chance of getting rid of the EBV. One major risk we take with lowering the dose though is increasing his chance of rejection. So for now we worry about the EBV and keep an eye on liver tests. 

Dylan is growing like a champ. He has gained five pounds since transplant and grown almost a half an inch. It breaks my heart to think about how badly his body must have been just getting by. How is must have needed nutrition it was unable to get due to his sick liver. At the same time I am elated to see my son doing so well now. He is truly thriving and it shows. He has more energy than ever. He doesn't get run down like he used to. He can go and go like every other five year old I know and I am loving EVERY minute of it.  We were given the green light to put Dylan back in school. They feel he is strong enough and doing well enough to go back. I am hoping we will not have to play too much catch up and that he will be ready for first grade in the fall with all the friends he has already made. I am glad the week ended with a little good news. It is for sure a step forward and in the right direction.


-Amber



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