In my last post I made the mistake of putting into the universe that we were likely going to go home by the end May… I should have known better than to post that!

On Tuesday, May 21^st, Joey ended up back in the PICU. The weekend prior, he had been a little tachypneic (rapid, shallow breathing), and by the beginning of the week his respiratory rate was twice what it should be. He was oxygenating well, but there was concern that he wouldn’t be able to maintain the rapid respiratory rate, and would tire out suddenly, which could require more severe respiratory intervention.

Once in the PICU, the team started trying to get to the bottom of what might be causing his tachypnea. The first theory was withdrawal. This made sense, because he was showing other signs of withdrawal a few days before, as we had progressed with his new weaning plan. However, after giving him some “PRN” (as needed) doses of morphine to calm him down, he was still breathing quickly. The team then thought it could have been lingering effects of his cold. He was tested again to see if he had caught another virus, and x-rays were done to rule out infections in his lungs. Everything came back negative.

So we had no concrete answers, but we think it might have been a perfect storm between his weaning, his cold, and being “deconditioned” to breathe after being intubated for so long earlier this year. The treatment plan was for him to rest and rebuild strength, and supporting that as much as possible- primarily through oxygen support and feeding him as much as possible.

In terms of oxygen support, Joey first was receiving high-flow oxygen when he got to the PICU, but was still too tachypneic. A day or so later, the doctors decided to switch him to non-invasive pressurized support. Essentially, he was getting additional pressure, via a nasal cannula, at a set rate to assist with his ability to take deeper breaths. It gave him just a little bit of help to control his respiratory rate, and help him relearn how to take effective breaths. After a couple of days on this setting, he had a normal respiratory rate and was much more comfortable breathing (i.e. not exerting so much energy).

Once comfortable from a respiratory standpoint, we started working on getting him stronger. Joey is still getting feeds, of breastmilk, via a tube to his intestines. To help rebuild strength, the doctors have been fortifying the milk with formula to give him extra calories. This was really effective at not only fattening him up, but giving him more energy- to breathe, to play, to do PT/OT, etc. In the last week alone, he has become so much stronger. Almost as strong as he was before his transplants (he doesn’t care for tummy time like he used to, but we are working on it).

As his strength increased, the team decided it was time to start weaning his oxygen support. He did well with this, and by the start of this week he was on very minimal settings. So, yesterday morning they decided to try him on room air (skipping over low-flow oxygen). So far, he has done great! It is the first time in three months that we have been able to see half of his face without tape all over it. Gosh his cheeks are chubby (thanks, steroids!), and I love them so much! I can’t stop kissing his free cheek.

We are continuing with his sedation wean, and with our most recent plan, he should be off all of his medications by mid-July. Each day that goes by, and these drugs are weaned, we see more and more of our Joey. He is smiley, giggly, and as happy as he ever was. We can’t wait to see him fully stripped of these meds soon. We are so proud of how far he has come in such a short amount of time, and relieved that so far, he is back to his normal self.

Now that he is off oxygen support, we are starting to work with speech-language pathologists to get him feeding by mouth again. We have had mild success with nursing (which I didn’t think we’d ever get to do again, so that was a pleasant surprise! I guess pumping all of these months has paid off…), and little success with bottles. Tomorrow we are going to try some solids and see how he does with that. We feel antsy about getting him back to feeding by mouth and are excited to keep working on this transition.

We are also keeping our eyes on a few things… specifically, his eyes. They are a little misaligned. We have consulted with neurology and ophthalmology about it, and both teams think that they are likely misaligned due to sedation weaning. We are monitoring it for now, and will follow up as necessary as he finishes weaning the meds. He will also have a renal ultrasound in six months to make sure his kidneys are doing okay. His last one, from just a few days ago, indicated there might be a tissue density abnormality. But for now, the nephrologists aren’t concerned, and want to continue giving Joey the proper amount of time to heal before more in depth reviews occur, and any sort of intervention.

Today was a big day for Joey- it’s the first time since early March that he’s been off oxygen support for 24 hours, and he turned 9 months old! We celebrated today by taking him outside for the first time since mid-February! I was thrilled to be able to do that, but he was mostly unimpressed. We walked around a small garden area of the hospital, and he did have fun looking at a tree and touching some flowers.

I don’t want to jinx anything again, so I’ll leave it here and post again when we know more about discharge.

Thanks as always for following along on our family’s journey, and for all of the love and support!

Love,

The Moschellas