When we least expect it…
We’ve had yet another setback. Last Wednesday, Maliyah started to complain about her tummy hurting. By Thursday she was noticeably distended, and like other times we decided to just let it pass. She was thirsty but for the most part was acting rather normal for a distended belly. Friday her stomach was rather tight so we took her to the Wilcox ER in Lihue. They ran tests and a full lab work up. Everything came back normal but she wasn’t acting normal. Again we thought, just as in previous bloating sessions, this would pass. We got home, hooked up Maliyah to TPN and were getting ready for bed when Linda heard sloshing in her abdomen. We discussed at length about if she had fluid in her stomach or if it was in her intestines. About 4 a.m. Linda was impressed Maliyah NEEDS to get an NG tube. So we mobilized, got Maliyah up and headed to the hospital.
Immediately they took her to X-ray, and found a HUGE amount of fluid in her stomach. After putting the NG tube into her stomach, they pulled out almost 2 Liters of fluid. She visibly was better, she started chatting more, and was definitely relieved. So, they monitored her for a few hours and gave us the option to take a flight over to Oahu Kapiolani Children’s Hospital, or be admitted to the floor at Wilcox.
We decided to stay at Wilcox for observation and were transferred out of the ER to the floor. Maliyah was still a little distended, but was visibly feeling better so Linda made a quick trip home to prepare for an overnight.
30 minutes after she left, Maliyah bolted out of a dead sleep, eyes flung open and she let out the most terrifying scream I’ve ever heard. I tried to hold her still as she rolled around in what could only be described as extreme pain. I called the doctor, the nurse and then Linda.
Immediately the doctor in turn called Flight for Life and Kapiolani and started mobilizing for the transfer. Linda was only 15 minutes behind and by the time she arrived, I had actually been able to calm Maliyah down.
They whisked her down to CT scan, to discover a perforation in her stomach and what looked like a small bowel obstruction. While the doctor coordinated the surgery team, and operating room in Oahu, Maliyah was whisked off to be life flighted to Oahu.
From the time she hit the tarmac in Oahu to getting into surgery was only about 20 minutes. Once they opened her up they discovered 1.5 liters of stomach contents that had made it into her abdomen along with at least double that in air.
The surgery went well, but now comes the long road to recovery. Day after day her temperatures spike into the 104s, heart rate climbs into the 180s, and her breathing is labored and tentative.
As with any perforation in the stomach the chances of sepsis are outrageously high. Infections are common, and repeat surgeries are all but guaranteed.
As I write this (Tuesday evening) the doctors have removed both the urinary catheter along with the stomach drain. All of which are good signs she is slowly progressing.
I want to say we are out of the woods and recovering, but as we sit here Maliyah is grunting at every breath, extremely sore, no energy, and with it enough to ask to watch Frozen for the 10th time in a row.
The other challenge we have is waiting for Maliyah’s stomach and intestines to wake back up. In healthy kids they could be back to normal after 4-5 days but with MMIHS it could take quite a bit longer. We are now back to 24/7 TPN due to Maliyah not being able to eat. This is a bit discouraging because she was just about weaned off of TPN before all this happened. We are so very thankful that she did have the broviac central to facilitate all these complications
Through all of this we have seen God’s guidance and love. Our next blog post we’ll have to tell you how He has provided for us.
