A moment of reflection
Chris got a new car last October. He traded in his beamer for a Hybrid Honda Accord. If you know Chris, you know he loved his BMW... but it barely fit the carseat, so it was time for a more practical, family car. Anyway, we use his car for our daily trips between the hospital and our house. So why am I telling you this? Well, on Thursday morning, as I pulled into the parking garage of the hospital, I scraped Chris's brand new(ish) car on a pole. This, not being the first time I have hit one of Chris's cars in a parking garage (Northern Virginia/DC has the worst parking garages), on top of everything else going on, caused me to have a little meltdown in the garage. After pulling myself together, I trekked through the hospital to Joey's room, planning how I was going to break the news to Chris (I should mention that the ONE day we took my car into the hospital a couple of weeks ago, we parked Chris's on the street and our neighbors accidentally hit it, so his car has really gotten beat up lately). I decided to go with the butter him up before breaking the news tactic. But, again, if you know Chris, you know he is one of the most level-headed people ever (I can't really relate... what do they say about opposites attract?). When I told him, he blew right over it, barely giving it a second thought. I'm sure he was a bit annoyed, but I couldn't tell. I remember thinking in that moment how lucky I was to have someone so amazing by my side as we go through hell and back. Someone so composed, with so much grace, especially in all of these stressful, inconvenient moments. To me, the car felt like yet another disaster to deal with in our life right now. And in a matter of seconds, Chris helped put it all back into perspective for me. He does that a lot, and I am so grateful for it. I can't wait for Joey to learn how amazing his dad is, how much he loves us and how well he takes care of us.
On to the update
This week was a little hectic, and frustrating. The medical team was preparing to discharge Joey on Thursday. The plans for Wednesday were to remove the drain from his abdomen, and see if he would take enough of the low-fat formula by bottle so he wouldn't have to go home with a NG (feeding) tube. Both the drain and NG tube have been a bit of touchy subject for us over the last week. The doctor on service had really been pushing for the NG tube to make sure Joey is getting enough nutrition/hydration, but we really don't want to go home with it. Aside from the equipment we would have to go home with to do the feeds, Joey doesn't like them. Anytime he has a NG tube in, he pulls it out multiple times, and that is not something we want to deal with outpatient. We want to give him a shot at getting to the required volume on his own, without the intervention of the NG tube. He has actually been doing decently well with the formula (I'm shocked honestly, I tried a little drop of the formula and tastes like what wet cardboard smells like). He drinks it, but stops when he doesn't seem to be hungry (he hasn't had anything in his belly for the last week and a half-ish, so we think he is slowly getting back to his normal intake). We are hopeful he'll keep that up and get to an appropriate volume so we can go home without the NG.
That brings us to the drain... Since Friday, the 23rd, we had been expressing concern that Joey wasn't draining fluid into the drain, but his belly was looking slightly bigger each day. The ultrasounds were saying there was fluid, but it was "undrainable". We kept asking what that meant, but never felt satisfied with the answers. Well, sure enough, once the drain was removed, fluid started spewing out. In total, Joey lost about 10 ounces through the opening in his abdomen. We were furious. We felt unheard and dismissed for days, not by the nurses or resident, but by our doctor. Luckily, the fluid wasn't a concern. It was tested, additional labs were drawn, Joey was given fluids to make up for the loss and was closely monitored for the next day. But, needless to say, we didn't make it out on Thursday.
Then, on Thursday afternoon, we noticed his PICC line started leaking. This is now our current number one issue to resolve before leaving. There are different ideas on how to address this, but with the weekend now here, certain folks involved in the treatment plan are out. We have tried a few temporary fixes in the meantime, but we don't want to leave it unresolved for too long because it introduces a greater risk for infection. Luckily, our favorite doctor is now on service for the week and she is great at getting stuff done! So we continue to hang tight while we tie up this loose end. We have been told by our doctor we should be out of here by Tuesday, if not sooner (and it sounds like without the NG!). We will keep our fingers crossed that nothing else comes up before then, and that nothing is likely to come up again anytime time soon. We would like to enjoy at least a week at home!
Joey continues to look and feel better every day. He is mostly IV-free now, so we are able to walk him around the floor, and snuggle/play with him on the couch in our room. He is so close to being able to roll from back to tummy, which was his favorite before this whole thing happened. He loves to try to sit, and bounce on his legs. We even noticed this morning that it looks like he has a couple teeth starting to emerge in his gums! As excited as I am, I am a little sad to think about the time that has been lost to the hospital. I feel like we will end up going home with a baby in a new phase of development that I mentally haven't prepared for. But dang, I love that baby. His smiles and giggles are the best. Every day (well, every other day since Chris and I trade off who goes home for the night) that I walk back into this hospital, I feel a little defeated and sad. But the moment Joey and I lock eyes, and he gives me that big gummy smile, everything else melts away. I am so proud of him. He is so tough and resilient, and I feel so honored to be his mom. I'm not in any rush, but I look forward to meeting all of the versions of him as he grows up, and seeing all that he will accomplish in his life. I have a feeling he will continue to exceed any expectation I have for him. But for now, I will continue to savor every second of him, just as he is in the moment.
Thanks for continuing to share in our journey, and for the support, encouragement, and love! From close friends and family, to people we haven't even met, and everyone in between, you all are so amazing and we are so grateful for you!!
With so much love, The Moschellas
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