Month: August 2014

Day 309: Busy Few Weeks

Bed HeadIt has been a busy few weeks. At this point in transplant things usually calm down, and doctors visits are more spaced out. For us, less tests and doctor visits would be welcome. Little Idan has had to go in at least twice a week for a visit and a blood test wile we are still trying to adjust his immunosuppressant dosing as well as get him off the steroids. He is on a very low dose of steroids, but his adrenal gland is still not functioning on its own. This means he tests very low when we check his cortisol levels and this can be dangerous if he gets sick or is in an accident. The doctors say it will take time for the adrenal gland to wake up and to be patient. Until then Idan will keep braving the needles and being an amazing sport during doctor visits.

One thing that is never really discussed with all the difficulties of transplant is the crazy amount of medications one is on for a long period of time. Besides the weekly infusions of antibodies, most of the months post-transplant Idan was taking between 9-11 different oral meds each day at 6-7 different time points throughout the day and night. Some days I counted 26 different oral syringes. Now Idan has been truly amazing with taking his meds, and we were lucky to not need a feeding tube during transplant, so he always took his meds orally. In the past month, we have been focused on cutting out the ones we can. We were able to cut out one of the two blood pressure meds he was on. Steroids are almost done, so that means we were able to cut out the antifungal he was on as well. Idan’s swallowing has much improved since we took him off the bottle (no pun intended) and he has been drinking exclusively with a straw for the past few weeks. This means we can cut out the liquid thickeners he was on as well as the acid reflex med. It feels really great to wake up on some mornings and only have to prepare 5 meds with his breakfast. Realizing that most parents probably dread giving their kids one medication, I think we are in a good place.Idan's New Friend

Our next big journey coming up is our return to Seattle for Idan’s one-year follow-up visit. We have started telling Idan that we are taking a trip to Seattle and will be going on a plane. Oddly, he keeps saying “home?” whenever we mention our trip to Seattle, so I guess he still has some memory of his time there. Nothing wrong with being a bi-coastal baby I guess.

Day 289: Never a Dull Moment.

8.8.14 - 1It’s been an eventful week, to say the least.  As always, we take the good with the bad, and keep moving forward.

Steroid Wean + Cold = Bad Combination

The past few weeks we have been attempting to wean Idan off steroids.  There are several concerns during this process, the most obvious being the return of the GvHD, but a second less obvious but equally dangerous concern relating to the adrenal gland.  When a person is on steroids for a prolonged period of time, their adrenal gland essentially goes to sleep.  The adrenal gland is responsible for many things, from responding to and controlling inflammation, to cuing you to wake up in the morning.  Think of the phrase “adrenalin.”  It kicks in when you need it most, but most of the time you don’t.  As we were weaning off the steroids, it became clear that it would take a bit more time than anticipated for Idan’s adrenal gland to “wake up,” and remember what it is supposed to do.  Not much longer, but at least a few weeks.

8.8.14 - 2Of course in the last few days of the wean, Idan caught a cold.  At the time, his adrenal gland was still a bit groggy, so-to-speak, and didn’t quite know how to “kick in” to fight the cold properly.  So we spent most of Saturday of last week (for those who have been following our Facebook page, that was our 5th Anniversary) neurotically taking his temperature and blowing his nose every 2 minutes.  Idan’s temperature stayed just below the fever threshold, but just high enough to keep us panicked about a late night trip to the ER.  Idan tossed and turned and whimpered the entire night, a little furnace in between Akiva and I.  But some time between 4:30 and 6, he fell asleep finally.

Thankfully, his fever broke and it was back to playing as usual on Sunday, but this last cold has put us through the ringer.  Every time we fall into a nice routine, we get a kick to the shin, reminding us to be as vigilant as ever.

Chimerisms and Med Changes

Meanwhile, it feels like we’ve been at the doctor’s office every day for the past few weeks.  We are weaning Idan off two other medications as we wean the steroids, which translates to multiple blood draws and vital sign checks each week to make sure his body is handling the changes in dosing and medications well.

But the good – no great – news is that, after all this, Idan will be saying goodbye to three of the thirteen medications he is currently on.  This is a huge step in the right direction.

The latest chimerism results are also in, and – for the first time in 9 ½ months – we can take a short breather.  Idan’s chimerisms are generally stable, with his T-cells hanging on at 32%, and myeloid only dropping slightly to 10%.  For now, the doctors are very cautiously optimistic that the graft has a shot of hanging on for good.  Although we had hoped to start weaning Idan off the other two immune suppressants by now, Seattle would like to keep them on for another 8 weeks at their current dosage and check Idan’s chimerisms again at the end of September.  If the graft stays stable, we should be able to start the long wean off of each of them in October, just in time for our return visit for Idan’s one-year follow-up back west.

Idan Has a Cold & Strange Our Strange 5 Year Anniversary

Idan, cold and all, playing with one of his birthday gifts

Idan, cold and all, playing with one of his birthday gifts

Today was a strange day. It’s was our 5 year anniversary and Idan went over to Amanda’s family for an “adventure”. Like every Saturday, the day started off with Idan’s SubQ IGG infusions and a nice bowl of cereal  then Idan’s grandfather picked him up and Amanda and I went downtown for a lovely brunch (turns out Amanda and I have not taken the subway together in over 16 months!). After brunch, Idan, who had woken up with the sniffles started to run a slight fever, so we came back up to Amanda’s family to be with him. It’s a tricky week for him to get a cold as we are trying to get him off steroids but his own system is still not making enough cortisol. By dinner time he had a fever and we started to worry that we might need to go to ER. We spoke to our amazing pediatrician who takes our calls on weekends, and decided to wait to see how he is in the morning. We canceled out dinner plans and babysitter (my brother) and Idan ended the day getting cheered up with a new dish set toy he got for his birthday. Currently he is already sound asleep while I write this post. We lead a strange life. There is no rest for the weary. Hope tomorrow he is feeling better.

Idan playing at his grandparents.

Idan playing at his grandparents.

 

 

 

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