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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