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| In the ER |
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| Liam waiting for his nurse |
Little did I know that an ER visit for dehydration, feeding intolerance, and weight loss would lead to a whirlwind of almost 2 months of procedures, hospital visits, and a new feeding tube. At our GI appointment in April our doctor said Liam needed to be admitted to the hospital for a new feeding tube and some more testing. He was throwing up so much that he had lost over 2 lbs in just a few weeks. So off we went to be admitted to CHOC for a week.
They made Liam NPO (nothing by mouth or tube) late Monday night after we arrived at the hospital to prepare him for surgery on Tuesday. They brought him to pre-op on Tuesday late morning (after some scheduling issues due to his timing of being NPO), Liam's doctor assured me the surgery would be quick and he would be in recovery shortly. Well it took a little longer than expected, he had to make 5 attempts to get his GJ tube in the right place. There was something off in his anatomy not allowing it to go in properly. In the end the surgery went fine, and he was taken back to his room after a little while in recovery. They kept him with no food until the next day in which they started feeding him slowly through his jejunostomy (small intestine) tube. He did very well at first but because he was
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| asleep before surgery |
going to have an MRI they had to again stop his feeds and make him NPO.
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| My bed at the hospital |
Due to them wanting to do a specialty cardiac MRI we had to reschedule so they again started his feeds slowly. He again did well until the increased his hourly rate to increase his calories and then he started retching and having bile output out of the gastrostomy (stomach) part of his tube. So we had to back down on the feedings and start continuously venting his g-tube to let out the bile that was now backing up into his stomach. On Thursday they again made him NPO in hopes of getting into MRI which of course didn't happen until Friday morning, so we starting feeding slowly again and started getting bile again. They didn't really have a great answer as to why he had so much bile backing up into his stomach except to say that on top of his stomach not working properly his intestines might not be working properly as well.
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| I love eating my IV tubing |
We finally went in for our MRI of his brain, heart, and chest on Friday morning after 3 days of being basically off his feeds. I had to go in the MRI room with him while the anesthesiologist put him to sleep with propofol and intubated him. It was traumatizing, as an operating room nurse I have been involved in hundreds of intubations and general anesthesia cases but when its your own baby you just shouldn't have to see that. I was crying and shaking leaving him in there like that. All of his other surgeries we have just kissed good bye in pre-op, which is also not easy, but then they wheel him away and we don't see anything behind the scenes. The MRI took about 2 hours, then we went to the recovery room for a while, he had a difficult time waking up from anesthesia this time. But we were eventually allowed back to his room where we waited and tried to start his feeds again.
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Liam's new Gastrostomy-
jejunostomy tube (GJ tube) |
Later that evening the doctor came to talk to me about his results, his cardiac and chest MRI came back normal which was a huge relief. Had it shown a vascular ring that would have meant yet another major surgery. They aren't really sure what is causing his esophagus to be dented in but they think it has to do with the placement of his Aorta that its pressing against his esophagus on one side. His brain MRI unfortunately came back abnormal, which we were kind of expecting. He basically has some dilated spaces in his brain and one spot of what they call gliosis, indicating that he did indeed have a stroke of some sort most likely in utero. This also explains his right sided hemiparesis. We will continue to be followed by our neurologist and they will most likely repeat MRI's every year to follow the progress. We won't be changing anything we are doing in regards to the results, he will still continue to do weekly occupational therapy and he graduated last week from physical therapy so he is doing very well.
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| Visit from brother and sister |
Late Friday night we were finally able to go home with a plan on how to replace the fluids he loses through venting his g-tube because at this point he still was having bile come out. Our initial plan was to slowly increase his feeding rate so that he could have 6 hours off his pump during the day but so far we have not been able to accomplish this. For now he remains on his pump 24 hours a day with small breaks for baths. For now he is not able to eat anything by mouth which is a little discouraging, at his age he wants to eat everything everyone else is and he doesn't understand why he can't. We were also suppose to be able to stop some of his medications which we have also not been able to do since every time we try anything we get lots of bile building up. within a few weeks of being home Liam got sick with a fever and a bad cold and cough and he started throwing up bile which almost landed us back in the hospital. The GI doctor said that anytime a child with gastroparesis gets a virus it makes it worse which is what caused him to start throwing up bile. Since it was a virus there was nothing we could really do for him except humidify, and suction his nose with saline. He had to have his feeds turned off for quite a while when he was throwing up so that was a setback. He finally started to get better when I noticed his tube site looked red and inflamed so back to the GI doctor we went, and he had a massive infection. So he had to start on 10 days of keflex to clear the infection. Today was our last day of antibiotics so I'm hoping we are in the clear, his site looks a lot better.
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| my car keeps me happy |
At our last GI appointment our doctor ordered Liam a GJ button which is basically like his old button he had but with one extra port going into the Jejunum (small intestine). So when we have to switch out our tube in a few months (which yes requires surgery again) he can place a button. Typically these tubes need to be changed out every 3-4 months. He also ordered a new formula for Liam, pediatric compleat, which is a more whole food formula. I was thrilled about this, it is the only part whole food formula available to be fed with success through the J tube. A lot of people are able to do a blended whole food diet but very very few have had success with this when feeding continuously into the J tube so we will have to wait on that until we can get him back to g-tube feedings. His new formula will have chicken, fruit, and vegetables so I'm really hoping he will be able to tolerate it. And the best part of it is that our insurance will cover the cost 100%!!! yes you read that right 100%.
It has been a struggle none the less for all of us adjusting to Liam's new schedule and keeping up with him having to be on his pump 24 hours a day but I think we are doing ok.
Oh my this was a lot of detail for one post!! I guess that's what I get for waiting so long to write again. We will keep you all updated with any new news, hopefully nothing as exciting as these last few months!
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our monthly supply delivery
for liam |
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| Home medication prep for the day |
