JOEY IS HOME!

On June 22^nd, Joey was finally discharged from the hospital! In total, he spent roughly five months there. A very long, very hard five months, if you ask us!

His discharge date was a goal that we set with his medical team two or so weeks after returning to the PICU in May, once it became clear that his respiratory status was improving.  To go home, he needed to meet a couple of requirements, but the big ones were that he needed to be off all oxygen support, and in a comfortable place with his sedation wean. For his sedation wean, this really meant that he needed to demonstrate he could handle the newest wean schedule with no issues for a couple of weeks, and it also meant that he needed to be on as few medications and at small enough doses that we wouldn’t have to worry about withdrawal at home. We also had to consider what medications would be easier to get outpatient (as you can imagine, it was difficult getting opiates for a 9 month old baby), and prioritize certain medications of the wean plan accordingly.

As the 22^nd approached, we were really hopeful that he would be able to successfully discharge. He was breathing much better, off all oxygen support, and handling sedation weaning well. He was doing so well, it was almost more difficult being in the hospital every day because he wasn’t really “unwell” in our minds any longer.

About a week or so out, it became clear that he was leaving on the 22^nd, or maybe a day or so later. But while he was handling his sedation weaning well, feeding had started becoming an issue. So we needed to find a solution to that before he was able to leave.

Feeding had been a bit of an issue up until the end of his stay for a variety of reasons…  We couldn’t really offer him anything by mouth while he was on oxygen due to risk of affixation. Once it was safe, we moved on to the battle of oral and feeding aversions, mostly due to the fact that he hadn’t had anything by mouth in so long, and instead had a tube shoved down his throat. It was a slow and delicate process getting him interested, and comfortable. We tried really hard to make the experience positive for him. At first, we had some mild success with nursing and bottles. But once it was decided to move continuous feeds from ND (in his intestines) to NG (into his stomach), things took a turn for the worse.

Joey had been handling continuous feeds through his ND tube well, so the team decided to move them to NG, to get his stomach used to food there again, and to help initiate some hunger. Which in turn, we hoped would help him want to feed more. Well, unfortunately, he didn’t handle the continuous feeds to his stomach well. We tried different rates, bolus vs. continuous, different formulas/milk combinations. But for over a week, poor Joey would just throw up several times throughout the day. He just couldn’t handle it.

Between all of the vomiting, and attempts at tube adjustments, Joey’s oral/feeding aversion became worse. He was barely sucking his thumb, which if know Joey, that is a BIG deal… he loves that thing. We knew that the current situation wasn’t going to work, especially at home- he wasn’t getting the nutrition he needed due to the vomiting, and from a long-term goal perspective, we were making oral feeding worse for him. So, we start discussing the options.

It essentially came down to having fluoroscopy put the tube back to ND and give him more time to transition to his stomach, or have a GJ tube placed. A GJ (gastrojejunostomy) tube is inserted through the belly, and it goes into the stomach and intestines. After talking to the team and the speech language pathologists, we decided to go with the GJ. It removed any tubing from Joey’s face/nose/throat, which we were told could be a big hindrance when it came to oral feeding. It also would give us the ability to slowly transition to stomach feedings again, by easily switching between the stomach and intestines, instead of having to go all in with either the NG or ND tubes. However, we weren’t able to have the GJ placed right away, we had to start with a J tube (intestines) to create the tract, and slowly dilate it to eventually fit the G and J tubing. So, on the 21^st of June, Joey had the J tube place. He had to stay for 24 hours to make sure he could handle the continuous feeds through this new tube okay before he could discharge. Luckily, that all went well and he was able to go home on the 22^nd!

At Georgetown, when a transplanted child gets discharged, it is tradition that they have a “clap out,” where all of the staff line up to clap and cheer as the child walks out of the unit. The first time Joey was transplanted and discharged, we didn’t know about this tradition. We weren’t ready when they all lined up, and kind of sped through, not fully taking it all in. This time was totally different. When we rounded the corner to start making our way through the staff, everything since mid-February flashed through my mind. Everything that Joey had been through. The days/nights that I didn’t think he’d make it out of that hospital alive; didn’t think he’d have another clap out. When I looked down at Joey, I was completely overwhelmed with immense pride. I am so proud of how much he has overcome, how strong and resilient he has been throughout all of this. What a little fighter I have been blessed with (he definitely gets his toughness from his dad)!

I then looked around and saw all of the staff clapping for him. I thought about all of the people that have been cheering him on for the last five months. People who didn’t know him, or us, but have become such a big part of our lives. I was also overcome with immense gratitude for these wonderful people that have cared for our entire family over the last several months.

I completely lost it. I sobbed most of the way through the clap out, and probably sped through it again. But, this time we turned around and said proper goodbyes (more like “see you laters”… we still visit when we can!).

Needless to say, it was an emotional day brining Joey home. I was even a little nervous… I was thinking, would he still like it at our house? Would he be bored without all of the people? But, luckily, he has loved it! Although, I do think he misses everyone… especially his nurses!

For the first two weeks at home, he slept 12 hours overnight, and took two long naps during the day. We were thinking, “Wow, how lucky are we?! This is great!” But, unfortunately, that didn’t last long. We are now dealing with teething and sleep regressions- I guess what normal parents and babies are going through! Yippee for normal! But I’m sure he just really needed those first few weeks to get some (relatively) uninterrupted rest.

A few days home he starting sitting on his own, without any support. That shocked us! After two major abdominal surgeries, bedridden for months, we really felt it would take a while to get there. Now we are working on getting him in and out of sitting on his own (hopefully by his first birthday!), and crawling!

Other things he loves at home…  hanging out in the backyard and staring at the trees, watching and petting (aka grabbing) his fur brother, and real baths (which are a bit tricky with the tubes but we are making it work)!

While we wait to get his GJ tube sorted out, the only thing we can really do to progress his feedings is work on eating solids, mostly purees. Most of the time this goes well (green beans are his favorite!), but he really loves “drinking” water from an open cup. His drinking is more like sticking his tongue in the water and kind of chomping around… but hey, we are working to keep the oral experiences positive to help get him back to full oral feeds, so we’re letting him do what he enjoys for the time being.

We have had a few sessions with PT already, which are going well. And have some upcoming speech/feeding and OT appointments on the books for this month. We have also met with nephrology to discuss the state of his kidneys. At this time, they aren’t in great shape after all he went through. But we won’t really have a good sense of the severity of damage until he’s about a year post (second) transplant, and has had more time for his body to heal. We are hoping for a full, or mostly full, recovery. Otherwise, we could potentially be looking at a kidney transplant at some point down the road.

While things have mostly been going well, it wouldn’t be Joey if he didn’t keep us on our toes a bit. The second night we were home, we ended up in the ED because one of his meds (crushed pills mixed with water) clogged his J tube. And then most recently, about two weeks ago, Joey was readmitted for a fever and we think, some stomach discomfort. We think the fever was caused by an ear infection. After a few days in the hospital he was back to normal, and we were on our way home.

Today, Joey turns 11 months old! I can’t believe how big he is getting, how strong. And he is so happy! I can’t even imagine going through all he has, and being that happy. Our days at home together definitely look different than they did on my maternity leave… with all of the meds and feeding tubes and tube/PICC care. But I am so grateful to have him home, and that I am able to be home to care for him.

We are also so grateful to all of you, for following along in our journey, for rooting and praying for our son, for your contributions to Joey’s COTA campaign (this is more helpful than you could possibly realize… all of his hospital stays, meds, tube supplies, therapy appointments, etc. add up!), for checking in our family, bringing us dinner, and everything in between. As parents, we do what we have to do when it comes to being there and caring for our kids, but our experience has been so much more bearable because of our amazing support system. So, thank you, from the bottom of our hearts! We are excited to continue sharing Joey’s story, and all of the good times ahead!

All our love,

The Moschellas