Meagan was able to go through her regimen of GI testing over the weekend. She had upper GI studies, motility studies, reflux, gastric emptying, bloodwork for all the digestive enzymes and important digestive organs like pancreas and liver. They slowed her feedings down to only 40mL/hour (basically a little over an ounce per hour drip) to see if this helped as well.
All of Meagan's GI studies came back completely normal. This is great because it means she has no trouble digesting her food, no reflux, and all her bloodwork and organs and enzymes that have to do with digestion are functioning perfectly. It's "bad" because it only offers another exclusion for her behavior and vomiting instead of a definite answer. But that's ok because narrowing down by exclusion is important as well. I honestly wasn't surprised - based on the lack of pattern as related to food and her behavior with her head before her vomiting, I doubted it was GI at the root of the cause - but still was one that had to be ruled out.
GI did come by and go over all her results in detail and offered a "solution" from their end even though nothing came out obvious on her testing. They talked about putting in a G-J tube. Basically, Meagan keeps her g-tube (which goes into her stomach) but they also put in an additional j-tube which would empty direction into her intestines. The point of this is to feed directly into it bypassing the stomach, and therefore, bypassing any vomiting. The idea of it sounds nice. Of course I don't want Meagan to vomit. However, the logic doesn't click with me. The root of Meagan's pain/vomiting episodes are still up in the air - and GI has been ruled out. The vomiting, as gross as it is, is her "relief mechanism" at the end of her irritable/fussy episodes. And with a J-tube inserted, she would have to go on continuous feeds all day, everyday. We couldn't do anymore bolus feeds. Considering there was no absolute evidence on ANY GI study to warrent this shift in feeding, considering the vomiting is her only relief, and considering she couldn't have tube meals as we have meals everyday and keep that feeling of "being full" my answer was an easy no. If there had been a blaring GI problem of course I would have tried it - but - I refused to just put a "band aid" onto a problem we had no explanation for as of yet.
Meagan had her MRI yesterday morning. They wanted to do the first part of the MRI and then add contrast, which would highlight certain things in the brain including CSF flow, which would be important to see in Meagan. She was in the scan about 40 minutes when they nurse came and said they were going to have to pull her out because she was having trouble breathing with the sedation. This was strange to me because she has had two previous sedated MRI's and several surgeries with anesthesia and had no problems. They brought her into the room and she wasn't well. The doctor was confused though because although she was having trouble, she sounded pretty clear in her lungs. The nurse went ahead and gave her an Albuterol treatment and put her on oxygen. Within about 35 minutes, Meagan looked less pale and started upping her sats (how well she is saturating oxygen). It was disappointing because of course I dont' want her feeling badly, and also the scan had to be stopped before the contrast which was an important part for us to see. Once she was stable we headed back to the room and waited to see what the plan was.
Despite her shaky morning with the MRI, Meagan really had an awesome day yesterday. She was silly and smiling. She was babbling and having a blast being such a ham with all the nurses..etc. I figured when Dr. R came back this nmorning, we would simply have a meeting about everything and see where to go from here. Little did I know of the night Meagan would have ...
Meagan had an awesome day yesterday, playing with her Minnie and smiling
Meagan started to thrash around 8:15 pm - she was thrashing back and forth, swerving her body to the side so her head would hit the side of the bed, and grabbing at her head and her eyes. She was obviously having pain or a headache. I was waiting for the follow up vomit, but instead she finally ended up passing out asleep. I was relieved so we could both get some rest. I kept getting woken up by Meagan's alarms though - her O2 sats kept going off. The little sensors are pretty finicky so I assumed they weren't picking up well. After over an hour of them going off, the nurse came in to check. Meagan wasn't holding O2 sats above 87. First the nurse tried to change the leads and reposition Meagan to make sure that wasn't the issue. Meagan still could only hold at 87 sometimes dropping to 85 or below. The nurse immediately went and got some oxygen. She put Meagan on a cpap of about a half liter of air. Her numbers didn't change. Finally her numbers went up to 91 with 2 liters of air. This still wasn't satisfactory so respiratory was called. They checked her out and found it so strange because once again, she sounded clear...but obviously her body wasn't saturating the oxygen as it should. After some high flow and a little time, Meagan's sats started to slowly creep past 91 to 92, and then slowly walked up to 100 over the next few hours. She stayed that way and so the nurse tried to go ahead and wean her off the oxygen by morning. She slowly turned it down and Meagan seemed to tolerate it ok so by 8am this morning, Meagan was down to no oxygen. It was such a strange occurence. Meagan has come out of major brain surgeries on room air and 100% saturation, so who knows what fluke kicked off last night's occurrence.
One strange new thing was her hands. Last night during her oxygen issues, she started to have hand tremors mostly in her right hand. It would tremor very fast and then her fist would clench up. If I tried to unclench her hand, it was like peeling plywood boards backwards - they were extremely stiff and didn't want to relax. This happened about 7 times over the few hours she was struggling with her oxygen and then they subsided. Not really sure if it was seizure related, or simply oxygen related but I will notate it and be sure to update her neurologist when we meet up next time.
After quite a horrific night, Meagan woke up in a pretty good mood today. She was herself, happy, silly and just really snugly. Dr. R was back in town so I knew once he came by it was time to buckle down and make a plan. Early this morning, he made his way to our room. He was surprised we were still here but also knew we had received no answers to her issues. He really didn't' want to believe it was neurologically related. I get it. You don't just go to the brain first. But - she's a brain patient first. All her problems stem from her original issue. And we had done due diligence and vastly explored any possible GI or blood/imbalance issues she could have had contributing to her episodes over the weekend. Dr. R and I went over everything together and both of us were equally frustrated. I know he doesn't want the head to be the problem - and likewise he wants a sraightforth answer, as do I. But being all else has checked out, we have to explore the neuro side of it. He was very up front with me and said that he wants to complete the MRI she couldn't yesterday. He said he wants to finish up the last half of it and get the contrast he needs to see more. I was fine with that so that is step one in the morning. If nothing is blaring on the MRI, the next step will possibly be for him to flush her shunt - just to make sure that from top to bottom it is flowing correctly and we don't miss any hidden clogs/kinks. If that is ok, then what we are left with is the result of her overdraining - slit ventricles (that I mentioned in the first update a few days back). The problem with SVS being the cause is that there's not really much we can do. The "answer" for slit vents is to open up the skull. Well Meagan already had that done last year when her skull had fused and Dr. R had to go in to do the cranial vault reconstruction. So she's already had the "solution" to SVS done. What does that mean for Meagan? That if the end result is SVS, there's really not "much" we can do about it at this point. Perhaps exploring a different shunt..etc.. is a reasonable next step down the road, but it certainly wouldn't be now or this week.
So that's where we stand with the Megs. We truly thank everyone who has been praying for us and offering help in so many ways - from emotional, to helping with the kids, to financial, to just knowing you are there if we need you. I would ask as crazy as it sounds to please pray we find a definitive answer somewhere - on the MRI or on the shunt. The "non answer" when you have a symptomatic kid is no fun. Especially being that her problems are episodic in nature, the lack of pattern, time of day, or knowing when she will have pain and vomit again is very frustrating.
We will see what tomorrow brings and hopefully we will have a little more clarity as to the direction we are heading. I really trust Dr. R with Meagan - I know he is just as frustrated as I am with no definitive cause of all this - but I know just like always he will take care of her as best he can. We are very blessed to have such an amazing doctor be in charge of Meagan's long term care. We appreciate him so much and how he listens to and works with parents. It really helps the process of working through issues, especially random ones like this, so much easier.
Yep that's a diaper on her foot. So the stinker doesn't pull out her IV! lol
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