I’m jumping on the blog to give a quick update about Zack. As you are aware, he was discharged from the hospital on Thursday afternoon. While walking to our car, Zack asked his daddy to carry him because his tummy was hurting. Odd, yes, but we knew he was still a bit sick when he was discharged. We knew the doctors felt he was well enough to leave the hospital, but that we needed to watch him at home and make sure we were hydrating him and letting him rest until Monday.
I had a PTSO meeting Thursday evening, but Jim and Z played trains quietly on the floor while I was gone. Zack ate some Ramen noodles, had a bit of a fruit smoothie, but did not want Gatorade. He loves Gatorade. He complained a bit about his stomach, but nothing major. However, after 6 p.m. there was very little output from his ileostomy.
Friday morning Zack woke crying in pain at 6 a.m. I brought him into our room and tried to get him to settle down. He kept saying his stomach hurt “in the middle” and that he wanted me to call his doctor and take him back to the hospital for an IV. This was not a good sign. I asked Zack to let us look at his stomach and it was hard and a bit distended. That freaked me out and then the vomiting started. Jim and I agreed we needed to take him back, so we texted his doctor and off we went.
Zack was vomiting every 5-10 minutes and crying about his stomach as we drove and looked very unwell. Jim and I were extremely concerned and frustrated and worried and scared. His stomach looked very similar to his stomach after his first surgery this June.
Got to Walter Reed and went straight to the GI clinic. Our new to us doctor came in the room, saw the barf bag asked a couple of questions and said he was admitting Zack. I was relieved because there was no way we wanted to go home with a child that sick. The clinic started an IV right there and then took us straight to radiology for x-rays and a fluoroscopy. The doctor wanted to see not only if there was an obvious obstruction on x-ray, but also to see in real time how things were moving in Zack’s small intestine.
We learned that there was not a mechanical obstruction like a kink or twist to the intestine, but that Zack was suffering from a pseudo-obstruction of the small bowel. Here is a link, let’s hope it works:
Zack is now on PPN (peripheral parenteral nutrition) which is similar to the TPN he was on this summer, except instead of being through a picc-line, the PPN is given through a vein. He can not have anything by mouth for a few days. Originally, we were going to try sips of clear liquids today, but his stomach was too distended and his output was non-existent after 11:30 this morning. The resident on duty this evening along with our awesome nurses drained Zack’s ostomy manually with a long rubber tube and got 660 ml out. That is a lot. We are waiting to see what happens next.
Our main doctor has agreed to move Zack’s endoscopy to Tuesday. Z has a cough, so we are unsure how anesthesia will feel about this. If they are not comfortable with Z going under general anesthesia, the doctors will do partial endoscopies through both stoma’s and not go through the mouth or bottom so that he can be awake for the procedure. This will allow some biopsies to be done now instead of waiting.
Zack’s small bowel is very dilated. I think the loops measure 4.83 cm across and large for an adult is over 4. Don’t quote me. The intestines should have shrunk down by now and have not. This is concerning. The doctor told us that we are in uncharted territory with Zack now. He said that he would encourage second opinions, but that he feels confident most people would do what they are already doing.
We have no idea how long Zack will be in the hospital. We worry about school. We worry about Jake. We worry about what will and will not be found. So many unknowns.
I’m hoping that you will all check the blog for updates and forgive us if we do not call you each individually. We are focused on getting Zack better and hope this will allow us to communicate with you all efficiently.
I’ll leave you with one of my favorite Bible verses. I keep repeating it to myself and I hope maybe it will help someone else:
Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go. –Joshua 1:9