Pictures and a Post – overdue
Thank you all for your continued support, prayers, wishes, and words of encouragement for our recent stay and our little warrior. Crazy to think that after we leave (hopefully on Friday) we won’ t be back for 14 months – the age that Evan is now. We’ll spend just as much time at home as Evan has on Earth and that is just crazy to think about.
So far everything looks good. They had turned his pain meds (morphine) back up today because he was a little tender this morning after they turned it down last night. Tonight we are trying to turn it off again and have him disconnected so hopefully his pain can be managed by Tylenol, Oxy, and Ibuprofen. He is feeling sooo much better and we are getting some smiles and more activity out of him. We have to pull the sides of the crib up all the way to make a baby jail because he has already pulled himself to standing a couple times. This is great because we don’t want him to “baby” his left arm too much (under his left pec muscle is his new pacemaker) and lose some range of motion.
Evan still has a chest tube and is on the edge of being able to have that removed. He has just enough drainage that it was best to keep it in another day than take it out too early. Once that is out, I will feel much better about holding him (I just fear yanking on the tube). Evan was also started back on his home meds and is finally pooping again. Every parent knows the importance of a good poop (or 4). He also got the IV in his left hand and his nasal cannula out and I think he really appreciated this.
About the pics: the first pics are obviously prior to this admission when Grandma Nan and Uncle PJ came down to visit. Evan was showing off all his crawling moves and walking while cruising along furniture.
The majority of the hospital pics are from the day of his surgery. You can see how cute he was before and how miserable he was after. We actually got put into the bay in the PCTU, which is a large room with 12(?) spots for beds and much more of a community sharing area. There are private rooms but I think since we were just going to be there for a day that we were moved into the bay. You can see the projection of Evan’s pacemaker in a couple of the pics. The swelling has gone down a bit since these were taken so it doesn’t stick out quite so much and we hope this keeps improving.
Our baby friend Zealen is in the PCTU and he and his family could use your prayers. We met his parents during a Labor Day party last time we were here. We were surprised to learn that they are from Kalamazoo too and also have Dr. Dommer as their cardiologist. Zealen also has l-TGA too which is so crazy b/c it is the rarest of the TGAs and he and Evan aren’t that far apart in age either (different surgical requirements tho b/c Evan is also single-ventricle). In any case, Zealen had been sailing through procedures but hit a major roadblock in August and was put onto ECMO which is life support that is very scary. Zealen’s body has fought so hard but now he will have to have a heart transplant. What his parents thought was a 2-week max hospital stay turned into this. Please pray for them and I seriously think the Kzoo community can come together and do something special for them. Anyone with me on this?
Tuesday morning we were moved up to the 11th floor – the cardiac kids general floor. I got to snuggle with my baby for the first time in a long time and every time I did he fell asleep. You can see pics of the wound on his side where they put the pacemaker and leads in. The pain from having surgery that went through his side (thoracotomy) is different and much more intense than going through his chest (sternotomy). So we’ve tried to be extra tender and gentle with him and unfortunately that means not much holding.
Wednesday started feeling much better. I’m sure pooping helped. We got many more smiles from him and he was much more playful. He got a bath after a huge puke and I think this made him feel better. I climbed into his bed with him and he seemed to really be cheered up from this. We are reading A Light In The Attic and honestly think it will be the perfect book for us. We also brought in cupcakes from The Cupcake Station as a thank-you to the nurses and doctors here (because, you know, we won’t be seeing them for quite some time !!). They are delish and would recommend them to anyone. They really dig Snickers, Cookies and Cream, Peanut Butter, Red Velvet, Strawberry, but not so much Vanilla Latte.
