Oh Thursday, we meet again. Last Thursday Zachary was discharged from Walter Reed after 7 days of being hospitalized. The week before on Thursday, Zack was being discharged from Walter Reed. Today, you guessed it…Zack was discharged from Walter Reed. I see a pattern here and I would very much like to break the pattern. I feel good about it this time, maybe…
I have a hard time telling a story with just a few words. It’s a problem. I’ll try and do my best this time. I can’t promise it will work, only time will tell.
When last we met, Zack was home and doing well. He was happy and energetic and went to school and was like a real boy again. We had a good run. Sunday morning Zachary woke up with a distended tummy. Jim and I measured his stomach and took a wait and see approach. Zack did not want breakfast, but did want to go to church. After church he asked to eat at Panera Bread. And then he sat on the sofa.
The doctors sent us home trained in draining Zack’s ostomy for just this situation. See this tube?
Yep. We get to stick that puppy into our child’s abdomen and watch stuff come out. I am not a fan, but Zack feels so much better when we do it and that makes it easier. Jim drained Z on Sunday at 5 p.m. At 2 a.m. we heard groaning. I’m sure you can guess where this is leading. Zack’s stomach was distending quickly and at 3:45 we drained him again. He felt better, but we made a mess in the draining process and had to change bedding, pajamas, have a sponge bath, etc. It took a long time to get back to bed. In the morning, he still felt sick and I kept him home from school. Sigh.
I texted his doctor. He said I needed to get Z into the surgeon at his next available appointment. That appointment wasn’t until the next day, but after sleeping on the sofa all day, Z’s ostomy suddenly began draining. He felt better. I sent him to PT. He was quiet, but OK.
Being a good mom, I sent him to school in the morning. He asked for breakfast, but didn’t really eat. He wanted to go to school. He had missed so much already. The school said they would call if he felt bad. They didn’t call.
When I picked him up for this doctor appointment and saw him walking down the hall I knew…this is not good. After signing him out of school, he asked to be carried. In the car, he asked to go to 3 West (the inpatient pediatric ward at Walter Reed). I was very happy we were headed to see his surgeon at this point.
At the surgeon’s office Zack was not able to be drained. I mean, the doctor tried, but nothing would drain. The contents were sludgy, thick and generally abnormal. Guess what he said? “I’m really sorry, but Zack needs to spend the night on the ward tonight. I need to think about this and figure out what is going on.”
Our GI team felt that Z had a mechanical obstruction. The surgery team did not feel this was the case. Two CT scans and several x-ray’s later no definitive answer could be found. I appreciate that our surgeon did not want to operate without a clear cause. He reminded us that Zack’s body is unique and that he did not want to do anything unless he was sure he could fix the problem.
In the meantime, the contrast from the CT scan pushed the obstruction open and Zack started out-putting (my made up word)at a rapid rate. Until the next morning…when he obstructed again for 10 hours. An NPO (nothing by mouth) sign went up so that Zack would be ready for surgery in the morning if necessary. Late last night he started out-putting like crazy again. Yay and super frustrating all at the same time.
Yay, we get to avoid surgery for now. Frustrating because we do not know what is happening, exactly. The latest theory is that Zack has adhesions in his abdomen that are causing a loop of bowel to pop out of place and obstruct. Large amounts of fluids seem to pop it back into place and open it back up. Or something like that. I have no idea really, but I’m at least mostly right.
Here is the issue. The only way to fix that is surgically. It will not be a little surgery. Zack’s body does not do well with surgery as evidenced this past summer. We do not like surgery and would like to avoid it for as long as possible. Plus, going in to fix scar tissue creates more scar tissue and nobody can guarantee it will work. Further, we have to have another surgery to reattach his colon in 18 months or so. See the problem?
The GI team and the surgery team have agreed to try a liquid only diet until Tuesday. On Tuesday we will have more x-rays and blood work and see how things are going.
That is pretty much where we stand. Yesterday after talking with our surgeon, I was fine. After talking with the GI team I was fine. They had not yet limited Z’s food intake and actually said Z could have a pancake. I tried to order one and the kitchen would not answer. I went to the nurses station and they got through right away. I tried to order and the kitchen said I was too late for pancakes (it was still 5 minutes before breakfast ended and I had been on hold for over 5 minutes). The night before they forgot Z’s Gatorade. THIS is what did me in…Code Purple! Code Purple! Penrod Lady is crackin’ up!
I started crying over a pancake. Not just tearing up, sobbing. It was pretty embarrassing, to say the least, but really not at all about the pancake. I was just so frustrated. I had been praying for clear answers and it was obvious that was not happening. I was tired, my head hurt, I hadn’t showered, I was wearing my dirty clothes from the day before because Jim had not yet arrived and suddenly I was d.o.n.e., stick a fork in me, DONE.
Now that we have been home for a few hours I feel a little better. As always, things could be worse. I don’t really like that saying because sometimes what is happening right now still stinks. However, I can definitely see that this is not the worst thing that could be happening.
All of our doctors have said that they encourage us to get second opinions, that Zack is a unique case. The surgeon has been calling his colleagues at different hospitals. Our GI team has recommended a few places to us. But that leads me back to my initial frustration. There is no best answer. AND when Zack starts eating again, I’m afraid he’ll obstruct again. It feels like a vicious circle.
Happily, I have a sane husband who tries to help keep me grounded. He reminds me that Zack is home and happy right now. He reminds me that we have a plan, that we have avoided a major surgery (for now), and that Z is being closely monitored. I’m hoping that after a few good nights of sleep, some healthy food, some exercise and a chance to actually talk to Jim without Zack listening, we will be able to formulate a plan to bring to the doctors on Tuesday.
And now you are all caught up. Still wordy, but I tried. I’ll leave you with Zack’s hospital stay in pictures taken by the Z-man himself. They are blurry, but from his perspective and kinda fun.