More questions….

Isaiah 25:9 It will be said on that day,“Behold, this is our God; we have waited for him, that he might save us. This is the Lord; we have waited for him;let us be glad and rejoice in his salvation.”

Right away this morning I got questions from several doctors asking if I had talked to neurology yet about the MRI. It was concerning me that something was wrong. Finally late morning they came in and told me the EEG looked good but that the MRI showed increased fluid pockets on the brain since her last brain MRI in November. They referred us to neurosurgery to have them look at it. I spent most of the day wondering and then they finally came in and said it isn’t enough of a change for them to want to do something about it right now for a few reasons. One reason being that the easiest shunt to place to drain the fluid would be placed in her belly but since that’s full of all other kinds of business and has had recent internal infection that is not a good option. Brain fluid shunt in belly, never would’ve guessed that one right? Me either! The other two options are her heart or lungs both of which can have large risks for infection. So…. We’re in the wait and see plan with that. Surprise surprise!

They are still hoping that the confusion was caused by the antibiotic which I found out that would be called cefepime toxicity syndrome. Kinda crazy that this antibiotic has a syndrome named for it’s side effect. And that no one else thought of that as these things started happening last week and I kept saying something wasn’t right. I did see some improvement in her speech today so hopefully it will all come back. A lot of what I’m understanding are context clues mixed with sort of words…

We had to skip the 6:00 feed AGAIN tonight. Three days in a row. I gave it an extra hour to digest and there was less residual milk in her belly but still 250ml. We’ll see if they come up with a new plan tomorrow.

The neurosurgeon has been wanting us to see a geneticist for awhile now (she was the one we saw in the fall who suspected tethered spinal cord was causing all of this). Well there was a bunch of run around with the neurosurgeon and Riley geneticist for the referral so we decided to go to one closer to home. But they were booking three months out…. so our appointment is March 31…. Guess we’re not gonna make it. Ugh! So maybe they are going to have a Riley geneticist consult here this week. We’ll see about that. All of these problems with no explanation why makes them want to see if some diagnosis has always been missing…. She also wants opthamologist to come see her and just try to see if there is any cranial pressure showing up on an eye exam that would make them want to further look into taking the risk of doing the shunt.

We had to put more tape around the outside of the ostomy today but we were able to make it last through the day today. There has been a lot of “macgyvering” going on around here with ostomy and catheter supplies. We have rigged up a bag with a rubber band that has the ostomy draining tonight to see if it can work and make it all night so I won’t have to get up and change it. Last night’s anchored catheter was kind of a mess so today I argued with nurse practitioners until I found one that had a fresh idea which seems to be working tonight so I don’t have to get up and cath her at night either.

So some good things today and more questions. Oh my goodness, what else is going to come up?!?! How is this girl still smiling and making everyone laugh and being silly when her poor body is self destructing?? And giving mommy kisses!

The picture below is her doing occupational therapy today. I got her to keep her head up nice and tall while sitting on the floor with OT by wearing silly glasses for her. Then she would try them too and show me. Sometimes I feel like I could add circus clown to my many list of talents I might add to my resume one day…