Friday Morning. 5:30 a.m. Don’t we look chipper? Our son, Jake, created an event on Facebook called Blue Friday. He invited his friends and my friends, and they invited their friends, to wear blue on Friday to help remind people to pray for Zack and his surgeons. Our family was overwhelmed with the response. Thank you to all who participated. Jim and I wore blue as well. Here we are just before heading down to surgery Friday morning.
Zachary’s surgery ended up taking 3 hours. I was fortunate enough to be allowed to go all the way into the OR with Zack and to stay with him until he was asleep. I was amazed at how many people were actually in the OR. Zack had two anesthesiologists. One worked the general anesthesia aspect and the other worked on Zack’s epidural. Zack’s surgeon was there as well as his residents. The head of pediatric surgery was there. Our GI doctor was there and a host of other people I should probably know, but they were all masked up. I felt confident he was in great hands as I left, but it was still hard to leave.
During the surgery, our GI doctor came and gave us a little report. It was comforting to get some news that way. The head OR nurse called and let us know that surgery was going well and that Zack was stable. She called again to let us know they were getting ready to close and things were still going well. Happily, Jim and I were able to wait in Zachary’s room. I was able to shower, we were able to eat breakfast and just hang-out together in private rather than in the big OR waiting room. I appreciated that because I find that waiting room incredibly stressful.
When Zack’s surgeon came to get us, he looked happy. That helped me relax right away. He explained that when they opened Z up there was very little scar tissue. This was great news as this was his third surgery and we still have another big one in a year to reattach his intestines. He explained that Zachary’s stoma was being encircled by his bowels and those bowels were intermittently constricting the flow of his intestinal contents. He said this is called an internal hernia.
The surgery team took the bowel loops out to inspect them and then “took down” Zack’s ostomy. This involved disconnecting his stoma, cutting about 1 1/2 ” of small intestines off, and sewing up the ostomy site. They then decided to make another ostomy site back on Zack’s right side. They placed it just beside and a smidge below his mucus fistula so that they could save that as well. If you’ll remember waaaaay back to June, his original loop ostomy was very similar to this. A good thing about this setup is that his mucus fistula will now be contained in his ostomy bag again. This makes our maintenance time much easier at home and at school and every other place we go. Zack’s mucus fistula is incredible itchy on his skin and he was forever scratching at it and pulling off his bandages. This will no longer be an issue. Yay!
We met Zack just as he was being moved into the PICU. He had a lot of tubes in a lot of places, but we expected that. Here is a picture:
The black thing in the upper left corner is the bag containing his epidural meds. His epidural wire is yellow and taped down his back. He also has a catheter for urine, and another IV in his left ankle. When we first saw him he was also hooked up to an oxygen mask, but that was disconnected pretty quickly. I don’t know if you can tell in this photo, but he is pretty pale.
The rest of Zack’s day was spent waking up from anesthesia. His pain was well controlled, happily. One of the reasons we decided to use both general anesthesia and an epidural is because of the amount of pain Zack was under in June. He had to stay in the PICU so long because of his pain. We are glad we decided to try this combination as it worked really well yesterday. Just look at this face:
So, maybe he doesn’t look happy, but he is asleep and we will take that! He continued to do pretty well through the night. He woke up once an hour or so asking for pain medicine and was given Tylenol. His surgeon was in this morning at 7:15 and I mentioned his pale complexion. He wasn’t worried as Z wasn’t in much pain.
At 4:00 this morning, Zack’s epidural bag started beeping every few minutes. The PICU team said it was because the bag was getting close to needing to be changed. Around 7:30 the team changed out the epidural bag. At 8:00 (ish), Zack started complaining of pain and was soon crying out in pain. His nurse and I thought it was strange timing as they had just changed the epidural bag, so we gingerly turned him as he screamed and saw that his back was wet. His nurse paged anesthesia. The PICU doctor ordered morphine. The morphine did nothing. He was given another dose of morphine and started to calm down. We were still waiting for anesthesia. The PICU team decided to add some Toradol as well. Zack began to calm down, but was still in pain.
When anesthesia arrived and looked at his epidural, they decided that it was not leaking. Their assessment was that Zack’s original bolus from surgery yesterday was wearing off and that he needed a higher dose today. They upped the setting on his epidural and said they would be back to check him tomorrow. I’m still not convinced that all is well with that epidural, but I’m not a doctor and time will tell.
Zack started calming down. He still did not want to be touched or wear clothes or to have anyone touch his bed. He was still crabby. He kept telling his nurses not to mess with him. He told the doctors that he did not feel like speaking and to please leave him alone and to stop bothering him. If you know Zack at all, you will know that this is not like our boy. He also told everyone that he wanted to go back to 3 West – the pediatric ward. He said he wanted to go back where he didn’t hurt. So sad.
The PICU, the surgeon and the ward staff all decided his pain could be managed on the ward and we were on our way back. Before we left the PICU though, we managed to convince Zack that he had to at least wear his gown. Whew.
Once back on the ward, Zack’s pain was still pretty high. He received another dose of Toradol. The nurses explained that it is like ibuprofen on steroids. He also receives Tylenol and can get morphine as needed in addition to his continuous epidural. He was still grumpy, but after a little nap he began to feel a little better. His respirations were still high, as was his heart rate, but when I left tonight he was playing Wii with his daddy.
It’s Jim’s night to hang with Zack. I’m hoping they both sleep well and that the pain is better tomorrow. Zachary’s ostomy seems to be working really well. I’m still a bit concerned about his coloring. The doctor ordered more blood work tonight as well in the morning to monitor electrolytes and other things. We will see what those show tomorrow.
Zack has still not gotten out of bed. Today was too crazy with pain. Hopefully the nurses can help us figure out how to get him out of bed tomorrow. Remember, he has an IV pole, an epidural, an IV in his ankle with an IV board attached to it as well as a catheter and bag. I’m sure it can be done, but it was too much for us to figure out today given his pain.
Big picture though, things are looking pretty good. The surgeons were able to find the reason for his obstructions and fix it. His ostomy is working properly. This is better news than we have had in over 5 weeks. We are hopeful that Zack will improve each day and that we will be home soon. I’m still a bit hesitant to believe that given our track record, but I’m still hopeful.
Thank you all for your prayers and well wishes! I’ll try and update as I can. Our new laptop is not connecting with the Walter Reed wireless for some reason, so I have to wait to post until I’m home. As I’m sure you can imagine, I’m pretty tired. I promise to try and update regularly, but hope you’ll understand if there is a delay from time to time. Until then, give your kids lots of hugs and enjoy having them home and healthy!