Joey has continued to improve, slowly but surely. The rise in his liver enzymes turned out to be due to mild organ rejection. He was treated with higher dose steroids for a few days, and the doctors recycled his normal post-transplant steroids. This course of treatment proved effective- his liver enzyme levels are basically back within the appropriate range.
While Joey was being treated for rejection, he was weaned off of the ventilator. Because he had been intubated for so long, he had become deconditioned to breathe on his own. Relearning to do this has taken time, and he still is working to get his breathing back to normal. At this point he remains on minimal (low flow) oxygen support.
Once he was finally off the ventilator and placed on low flow oxygen, he was no longer considered ICU status. So on 5 May, Joey was “stepped down” out of the PICU and into the pediatric transplant progressive care unit. It was a bittersweet day for us. We were thrilled Joey was doing well enough to no longer require critical care, but we love our PICU team so much, and the care they provided him. Luckily, they are just down the hall and visit Joey often!
To keep things interesting, the day Joey was stepped down, his tongue started swelling. By the next day, his eight-month birthday, his tongue couldn’t even fit in his mouth. Luckily, it wasn’t obstructing his airway, and the swelling was mainly isolated just to his tongue. Over the next several days, he got additional high dose steroids and Benadryl to help with the inflammation, and to help if it were an allergic reaction of some kind. We spent those days trying to find the cause, which in true Joey fashion, we were never able to pinpoint. There were two medications we thought might be contributing, and those were discontinued/changed. Within a week, his tongue had resumed back to its normal size.
During the tongue-tastrophe, Joey didn’t make much progress on weaning his sedation medications. We all decided to try a slightly aggressive tweak to his weaning plan, and it ended up being a little too drastic for him. We spent the next couple of days trying to get him back on track. As of this post, he is still weaning down on all of his medications. He is almost off of two of the three, and handling it mostly well at this point. Every day we see more and more of our little boy. This past week, we have finally seen him smile and heard his cry. Both we have missed for over the last two months. Thinking back to the first few weeks after he was born, I never would have thought I’d miss his cry. But when I heard it again, it brought tears to my eyes. This week has brought a renewed sense of joy to our hearts and spirits.
We were hoping Joey would be off of the oxygen by now, but unfortunately, he caught a cold (likely from me). The oxygen is now mainly there to help keep him keep comfortable from a respiratory standpoint while he kicks this cold. He has been doing well weaning off the oxygen, and will hopefully be off completely within the next few days.
When he tested positive for a virus, I think we were all holding our breath a little bit to see how he would handle it and what impacts it might have on his immune system. Specifically, whether it would end up wreaking havoc on everything. So far, he has physically handled the virus well! Better, even, than I did. We are waiting for some of his lab results from Ohio, to get a better idea of how the inflammation and his immune system are doing from a broader perspective. We usually get these results about a week or more after they are sent, but so far things have been trending in the right direction. Once we are discharged from Georgetown, it has been recommended we consult with Immunology at Children’s National to get a better idea of what is going on with his immune system. Their team has been involved in his care so far, but has not yet seen him or done any more in depth testing. We are hoping that consulting with them can give us some more answers, or at least a longer-term, more proactive plan for caring for him from an immunological standpoint.
Regarding feeding, Joey is still taking milk through the ND tube, which goes straight to his intestines. To minimize risk of aspiration, his tube will be moved from his intestines to his stomach once he is no longer on oxygen and more stable from a respiratory standpoint. In the last few days, we started consulting with speech-language pathologists to work on his oral functionality, primarily to get him back to feeding by mouth. He has started trying to suck his thumb again, and is very interesting in bringing everything to his mouth. From what we have been told, a lot of children who are not eating by mouth for a long time end up with oral aversions and do not have any interest in eating for a while once they are able. We are hoping with Joey still being young, and teething, that will all play in his favor of getting back to eating by mouth soon.
Overall, Joey is doing better each day. It is still a little unclear when he will be discharged, but we are hoping it will happen by the end of the month. It seems like the big-ticket items to address are his oxygen, and getting him down to his last sedation medication, which we can finish weaning at home from what we have been told.
We are excited at the idea of going home, but know a lot of the support we will need to get Joey back to his previous physical baseline, and continue advancing, will be limited. We have learned about resources available through the county, which can provide OT/PT and speech-language support at our home. We plan to work closely with them once we are discharged, and we are so grateful this sort of resource exists.
I’ve been thinking back to the first (and almost second) time we went home… how badly we didn’t want to go home with a feeding tube, how nervous and stressed we were about caring properly for him, how overwhelming it all was. But it feels different this time. We feel much more confident that we can handle whatever he needs of us.
As always, thank you for all of your love and support.
All our love,
The Moschellas