Tuesday, December 27, 2011

Christmas in the Big House

No, I didn't get arrested before Christmas. ;) Emily was admitted to the hospital the Monday before Christmas. She had another blood infection caused by a bacteria translocation from her gut. Unfortunately, there is nothing we can do about a leaky gut. She would get these same blood infections even without a central line. She was started on massive antibiotics, and remains on three of them still. She has had a drastic decline in her neurological status this last month, so genetics/metabolics are involved closely this admit as well. The new thing is her inability to swallow and control her oral secretions (spit). She is seeing pulmonology and ENT now for this. We have started breathing treatments and are going to try Botox to her salivary glands. Today or tomorrow she will have an Upper GI done to check the status of her fundo. We know she throws up right past it, but we want to be sure she hasn't re-herniated. Later this week she will have an MRI and MRS of her brain. This will hopefully give is an idea if what is going in with her brain, causing the neurological decline. The MRS is useful in diagnosing mitochondrial disorders as well. We are doing a new muscle biopsy when we do the salivary gland Botox. She may not have these two surgery procedures done until we are outpatient, depending on how far out surgery is booked for non emergency procedures. Hopefully Emily will remain stable, and the plan is to discharge on January 5th or 6th, when her IV antibiotics are done. I would love for the Botox and biopsy to be done inpatient before we go home, but the ENT surgeon is it of town until the 6th or so. So, we celebrated Christmas in the hospital. I was really down about it at first, but it was nice. I managed to reserve a meeting room, and all our family came. They brought food and presents, and we had a good time. Emily can't leave her room, she is on isolation until some viral tests come back. And we couldn't fit all our family in the rom at one time. But we took turns going back and forth, eating and opening gifts, spending time with family. It was quite awesome, who knew Christmas in the hospital could be enjoyable! Two Santas came, some firemen, and Emily was quite spoiled. We are truly blessed to have an amazing family (both my side and my husbands side) who made this day as good as possible. Thank you! I hope everyone had a nice holiday. I can't believe it's already almost 2012. We celebrate our 13th anniversary on New Year's Eve. I guess we'll celebrate that in the hospital as well. :)

4 comments:

Enriquez Family said...

I love how optimisitc you are about everything! Your an amazing mom! Emily is so lucky to have you! Glad you were able to enjoy Christmas! I was bummed for you but so glad you made it the best you could! Your awesome!

Lindsay Marie said...

I'm so glad to see that your keeping a positive attitude during this hard time. I pray that the doctors will find out what's wrong with Emily.

Reagan Leigh said...

Just make sure they run the respiratory chain enzyme testing on her biopsy (not just pathology). It sounds like common sense but I can't tell you how many kids I know that went through the trouble of having muscle biopsies but their doctors never ordered anything other than pathology on the sample!! Reagan's pathology came back normal but her enzyme testing was the key to her diagnosis! Thinking of you guys and hoping you get home soon with a happy girl!

Eric said...

So sorry to hear that Emily is still having the same unimaginable troubles. We have to adapt and terrible becomes the new normal. Best wishes for strength, you're doing an awesome job.