Evan did so well with surgery that we were released on Wednesday morning! I am so proud of him and how he has handled himself with everything that he has been through. He still has a smile on his face and is still a sweet little boy. He has absolutely the best personality, disposition, spirit, outlook…. whatever you want to call it… we could not have asked for a better kid. Recently we started playing a game where he says “mama” and I ask “who’s your mama” and he points to me. I say exaggeratedly “me?!? I’m your mama?!?” and he says “uh-huh!” and I say “oh thank you!” and kiss him on the cheek. I know it sounds dumb but we play it over and over and over and honestly I am just so so happy to be Evan’s mom. I am so thankful his spirit picked us for his parents. How we deserved him, pfft I don’t know, but I’ll take the blessing we got!
His new site his healing nicely. We were given instructions to not let it move for 2 weeks so we taped everything down. It does present some challenges when we feed at night or in the car. Because everything is taped down, it’s essentially like he doesn’t have an extension so we don’t have much line to play with. Typically he sits with his onesie unsnapped and no pants on when eating. I’m happy it’s the summer so we can eat without pants on!
Wednesday morning a lot of people came in to see Evan. Well, lots of people came in all the time. I didn’t think it was possible but I think Cincy has more interruptions than UofM. Seriously Grand Central Station. Anyway, someone with electrophysiology came by and talked about Evan’s pacemaker. He made some comment about Evan having a lengthy P wave. He was also talking about Evan’s meds and how uncommon it is to be on them and need them to help with the squeeze of his heart (Digoxin) considering that Evan is “lucky” to have a functioning left ventricle. The left ventricle is supposed to pump blood to the body, so it is stronger and made to function harder. The right ventricle is only designed to pump to the lungs. So with single ventricle kiddos, those with functioning left ventricles (HRHS) are considered “luckier” than the ones who have functioning right ventricles (HLHS) because in theory their hearts should last longer. I think this doc was just surprised to see Evan on these meds considering his left ventricle should be good to go. He was also surprised that Evan received a pacemaker so young. It is actually fairly common for l-loop (l-TGA) individuals to require a pacemaker in life but he was surprised it happened right after the Norwood.
The thing about any of Evan’s EKGs or echos is that they are subjective – what one says is mild another calls moderate. What one is surprised by another considers it but not heavily. It’s a lot of interpretation. So I don’t think much of what he said other than to take note of it. I trust our cardiologist and her understanding of Evan and trust she will take action when necessary and knows what is best for him. I do wonder what level of detail we would understand if we were medical people. Kind of like looking behind the curtain at Oz… what’s really there that we would find interesting but don’t yet understand. Medical talk is really a different language.
Evan was released from the Pain Management team as he had required very little extra medication to manage his pain. I was surprised at this. Normally he does like his pain meds and tends to need to use them a bit longer but not this time. He has been easily managed with OTC Tylenol when needed.
Wound care came by and explained how to care for the PEG. He has a tiny bit of drainage around his new site but nothing big and nothing we really need to have a dressing on or anything. It should stop as it heals. Pulling the tape off the kid was the worst part of everything. Tape over his belly and tape for the IV on his foot. That created quite a few tears.
Due to Evan’s previous history with Psuedomonas infections, especially in the area of his new g-tube, he received doses of Zosyn (thank you Pfizer) prophylacticly once he went in the OR. Surgery just wanted him to receive at least 1 more dose in the morning and then he would be through.
GI stopped by on rounds and noted that Evan has worked up to his full-feed volume, tho fed continuously, but was tolerating everything well. He just needs to work up to bolus feeding instead of continuous but that it could be worked on at home. They gave the discharge blessing! All I said was make it happen quick because I have a long drive ahead of me (Dad left Tuesday afternoon to go to Philly for work so it was just Evan and me on the road). They did their part and we were leaving the parking garage at 12:30.
Evan did remarkable on the ride home. He slept for the first couple hours and only got restless near the very end. It was definitely a good day to be in the car because he was on continuous feeds and being strapped down makes it very easy. He also still wasn’t 100% so he didn’t feel like being super active anyway. If you ever know someone who has a kiddo who is continuously fed give them a hug, particularly if they were fed that way as infants and toddlers. I did it for 1 day and you know you will do whatever it takes for your kids but I can’t imagine it forever.
After arriving home Evan and I went for a walk to stretch our legs. We took a break from eating to walk in the grass a bit. He was pretty pooped so he went to bed early and without issue, just happy to be home.
Thursday Evan started getting his formula with bolus feeds without issue. He even ate some pureed food rather eagerly. We ate outside on the porch because it was so gorgeous out and I thought he would be distracted but he was awesome. We went on a couple shopping trips and he did great again. This kid was super blessed with patience.
Even though we came back from the hospital early I technically could have returned to work. I had already planned on taking the rest of the week off so I stuck with that. Getting home early was such a bonus. I have not had a couple relaxing days off with my son since he was 5 months old – Christmas 2011 – when I had to “use it or lose it” and burn a bunch of vacation at the end of the year. Otherwise all of my time off is spent here and there at various appointments or, unfortunately, with multiple hospitalizations. It’s tiring. But it is so hard to take time off with the constant nagging in the back of my head that I might need it someday. I want to have fun and breathe deep too. So on Friday we did just that – we went to the zoo!
Remember the part when I said he has a lot of patience? Ha! Well I was the mom with the screaming kid in the zoo. It couldn’t be more obvious that he is turning 2 soon! So we are getting some tantrums pretty hard core. After calming down a bit, the rest of the time was fun. Still not lots of smiles but Evan is a pretty serious kid. From moment 1 we’ve been told how serious he is and it’s so true. We rode on the carousel which he was nervous about at first but trusted me enough (or was in awe enough) to go through with it. He even fed the giraffes. I loved having a fun day with my son!
Last moments in the hospital and recovering at home:
At the zoo with mama:
