Hospital Update

As I mentioned before, Meagan was recently hospitalized.  Starting this last weekend she wasn't holding her feeds down very well.  Along with that we saw increased irritability, and her grabbing her head a lot as if in pain.  We also noticed she was a bit off balance.  We waited a few days before going to the doctor on the chance it was just an off day or a viral bug, but she continued to get worse.  By Tuesday she didn't want to do anything except lay down on our carpet.  She asked for her bottles but wouldn't drink them and she wasn't handling the tube feeds well still.  I had emailed Dr. R the previous night explaining what we were seeing and they said if not better by Tuesday to go to the ER... so off we went.

Meagan was dehydrated and still not holding feeds and in obvious discomfort when we got to the ER.  It was clear after we saw the ER doctor and the Neurosurgeon on call that she was being admitted.  If for anything, to observe, but considering she just had her new shunt system put in a few months ago, her behavior warranted them keeping her to check things out.

Meagan was fairly miserable and started having issues breathing efficiently at night.  She was getting oxygen ok, but her actual respiratory rate would fall to exttremely low numbers, prompting me to jostle her a little in bed, after which she would take a bigger breath and then stabilize her rate.  We also still had her holding her head in pain and she still wasn't tolerating feeds.  Wednesday morning, Meagan slept.  She slept and slept and would barely wake up.  Dr. R didn't like it so he came down and adjusted her shunt.  He then continued to pump it vigorously by hand, after which Meagan seemed to come around a bit more.  We decided to try continuous feeds on the feeding pump to see if that helped with the vomiting. The GI doctor also ordered her some Nexium to protect her throat from scarring when throwing up, and Dr. R wanted to watch her at the new setting to see if we saw any improvement. He gave her a big hug and kiss before he left for the day and told her to behave.

 As the day went on, Meagan continued to have the same behaviors.  She even ended up throwing up her continuous feed, so at that point GI talked about putting in a Jtube to bypass her stomach and put her food directly into her intestines.  I was not opposed to that if that's what it took to get her nutrition, but, I was not ok with doing that without vetting every possible Neuro cause of what is going on since that has been her pattern in the past. Meagan also had a few seizure clusters - but a new type.  She had three clusters of what are called drop (or atonic) seizures.  You can read more about them here, but basically it is when there is a sudden loss of muscle tone, most often noticed in the head as it will suddenly drop like dead weight forward, and then recover, and then repeat.  Meagan did this about 5-8 times in an obvious pattern in each of her clusters. Each cluster was about 30 seconds long and the nurses thought with the repeated clusters it was time to let Dr. R know.   Dr. R went ahead and called Dr. F (Meagan's Neurologist).  Rather than go through more doctor visits, and considering she already has the epileptic history, he decided to just push up her Trileptal dosage to hopefully curb the new breakthrough seizures.

This morning I talked to GI and Dr. R and Blair about my thoughts and they all agreed that we should try a few more things neurologically first before changing Meagan's GI habits.  The GI doctor said she felt the GI symptoms were basically just that - a symptom of something else going on.  Today Meagan still is holding her head and eyes as if in pain, and she also refuses to sit up, or if she does for a second, she flops over or arches really far back.  Dr. R said that based on that information alone, he may need to mess with her new valve some more to find a good spot for Megs that is at an even higher setting.

In a little bit we are off to MRI just to double check her other brain issues and Chiari..etc... to make sure all that anatomy is stable and that we aren't missing something.  If all that is stable then Dr. R will come and dial up Meagan's shunt even more and then we will wait and see if symptoms subside and feeds get back on track.  That's where we stand at this point.  We are so lucky to have such a great group of specialists looking out for Megs.  They truly care about her well being, and are such good listeners whether it be listening to the parents or the nurses...which is such a critical piece in getting Megs the best care possible.

We will update more tomorrow once we know the MRI results and what the plan is!

Meagan relaxing with pain meds and fluids....as you can see she is not a fan of the gown. Oh well - whatever works!  The child life person on the Neuro floor remembered Meagan absolutely LOVES Frozen, so she found a copy and has let her watch it over and over in her room.  It keeps her very content while we wait for tests and results!