Omaha
I can’t believe it’s been 6 months since my last post and I apologize for not keeping everyone up to date as to the happenings in our lives. One of the main events happened back in February. We made a trip out Omaha, NE to see Dr. David Mercer. He is the head transplant surgeon but also the director of the the intestinal rehab program at the University of Nebraska Medical Center. We chose Dr. Mercer specifically because he treats a number of MMIHS patients and also sees a lot more patients who have motility issues. We felt like we had tapped out of our resources on island and needed answers on how to help Maliyah out with her ongoing symptoms. Unfortunately, Maliyah’s bloating episodes, abdominal/back pain and diarrhea have been getting more frequent and more unmanageable. The medications that once worked are not as effective and there is not much we can do right now to help her.
So on February 13, we made the trip out Omaha. The first thing they had us do, was to do a small bowel series. This is where they inject a contrast solution into Maliyah’s gtube (that appears on X-ray) and track that contrast as it makes its way through the small intestine in real time via fluro. This took about 3.5 hours for the solution to make it all the way to her large intestine. The test itself wasn’t painful, but over time, the contrast started to make Maliyah’s tummy cramp and hurt.
After the small bowel series we met up with Dr. Mercer and his team. He took one look at the results of her test and pointed out that the first half of her small intestine looked small and normal and then halfway through it became large and dilated. It looked to be about 5 times larger than the normal looking bowel. This potentially is what is causing some of the bloating, discomfort and other symptoms. Due to the size of the dilation, food would just enter that space and sit and ferment causing the bloating. The intestinal walls were so stretched that they could not effectively move food through. Dr. Mercer told us of a procedure called Tapering Enteralplasty, that from his experience helps with a lot of what Maliyah has been going through. He described the procedure as using staples to taper down the dilated part of bowel to be the same width as the normal size bowel. This would enable the intestinal muscles to more effectively do peristalsis and wouldn’t let the food get lost in a larger space. The solution seemed a little too simple but it also made sense.
Once we made it home we had a lot more questions about the procedure. After consulting with our pediatric surgeon (Dr Sid Johnson) and having another phone consult with Dr. Mercer we decided that it would be in the best interest of Maliyah to have this surgery done. Thankfully our pediatric surgeon is able to do the procedure on Oahu and we do not have to spend a month in Omaha.
The surgery is scheduled for May 2nd, and as it draws near, we’re finding ourselves being more stressed and anxious. All the potential complications and recovery challenges flood our thoughts. Dr. Johnson said to expect the surgery to last 4-6 hours (potentially longer) due to the amount of scar tissue and the tedious nature of the surgery. This will be the biggest surgery to date for Maliyah and we’re trying to prep her for it too. The older she gets the more involved we want her to be in her care. We want her to feel comfortable to speak up and ask questions. We told her that this surgery will hopefully help with her bloating and back pain. She’s agreed to the surgery but also said that she’s scared and nervous. I wish we didn’t have to do the surgery as well, but, with the frequency of bloating episodes increasing and her medications not being very effective we’re stuck between a rock and a hard place. The surgery potentially gives us hope that things will be better, but it also threatens the security of what we know now and possibly making that worse.
I was chatting with another MMIHS mom and told her that “It’s such a mixed convoluted life. Our children’s suffering is tough, but at the same time it in a way makes them who they are and who they become. You hate to see them suffer, at the same time you can’t imagine life without them.” She couldn’t agree more.
At this time all was can do is trust in God and pray for peace. Please keep our little family in prayer as we get ready for surgery and if you can, say a prayer on May 2nd - 7:30 am Hawaii time. Thank you.
On another note - we had a new addition to our family join us right before the new year! Her name is Yuka and she is already Maliyah’s buddy. Ever since we lost Meeka last year, Maliyah had been praying every night for another “Meeka” dog. After a pretty bad episode we decided to look into a puppy for Maliyah and we are so glad we did. They already share a bond with each other that is so very special.
