Sometimes it is hard to gauge just how difficult surgery can be on Zack’s body. He is usually cheerful and energetic. This time our little monkey was acting better IN the hospital than at home. I think sometimes we underestimate pain control. We have great pain control in the hospital, but at home we rely on Motrin and Tylenol. Last week Zack could have used a little more help in the pain department. His staples were really bothering him and his wafer would NOT stay on which caused his skin to hurt… a lot. He was really just a mess. Who can blame him?
This is how our guy looked for most of the week:
There he sat, on the sofa, for hours a day. Doesn’t he look pathetic? He started to perk towards the end of the week, but only once his dad got home from work.
Because of our wafer issues, Zack’s surgeon took his staples out a few days earlier than planned. THANK GOODNESS! Getting the staples out helped Zack feel more comfortable moving around. Our ostomy nurses helped me brainstorm new ways to keep that darn wafer stuck on his body and we finally found a winning combination of things that worked.
For those of you who know what the heck I’m talking about, we used gobs of stoma paste around the center of his wafer as well as lots on his staple line to fill in the gaps. We kept Zack lying down for five minutes before allowing him to get up and then we put his tightest stoma belt on for a few hours to help the paste cement. This combination of things allowed his wafer to stick for a whole day! That meant Zack actually slept through the night. Sleeping through the night has helped everyone have a better attitude, not just Zack. Not that I would ever be grumpy…..
I think we are now over the worst of the post-surgery yuck. Zack has not been asking for pain medicine as often. He has several good hours during the day where he plays pretty normally. He does tire out pretty quickly, but we are only 14 days out from some pretty big surgery.
Zack is excited because he can now take an actual bath and go swimming again! He is still restricted in his activities for another two weeks, but he was able to go swimming at his BFF’s pool today (Z seriously calls his buddy that). Getting back to normal is good for Zack’s spirits.
After swimming with is buddy, Zack came home and rested for a few hours before begging to go outside and play with the neighbors. We live on a cul-de-sac that has about ten boys Zack’s age. Today was one of the hottest days of the year. Zack is at more of a risk for dehydration than other kids because of his high ostomy output. So what did we decide? We decided to let Zack off house arrest and play outside. Parenting at its best. Feel free to take notes.
The kids in the neighborhood are all so protective of and kind to Zack. They were playing a game they invented that was part lacrosse, part soccer. Although the game looked really fun, it was definitely not on the approved activity list for Z. The boys thought a little bit and then decided that Zack should be the referee and help keep time. Zack was thrilled!
Here is Zack giving the ready, set, play signal:
After a few minutes of standing in the sun, Zack realized he needed a break and continued his job as an armchair referee:
We are so glad that Zack was able to play today, but we are still super cautious about his activities. Jim and I are worried about his new stoma. There is a significant difference in the size of his stoma between lying down and standing up. It is not yet prolapsing, but we do not think it will be long until we are back to that again. Sigh.
Zack lost five pounds while in the hospital. His cute little chub is gone and he is back to being pretty darn skinny. He was 50 pounds when he was admitted and right now he is 45 pounds. Happily, his appetite is starting to return. We are also pushing the formula feeds at the moment to try to get him back to his 50 pound mark. Our doctors tell us good nutrition helps aid healing and we are all about that!
We are still waiting for our phone conference with all of Zack’s doctors. We have made our own “plan” for what we are going to do if it prolapses before we are able to talk to everyone. Zack is currently scheduled for more testing at the end of August, you know, right when school starts… because that is how we do things around here. Actually, to be fair, he was originally scheduled to have the tests the first week of August, but that had to be rescheduled due to his most recent surgery. Jim and I are doubtful the stoma will hold on that long. Hopefully we are wrong….
Hug your babies!