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. :)

Monday, December 12, 2011

It's almost Christmas!

It is hard to believe that it is almost Christmas. It seems like this entire year just disappeared. It doesn't help that we spent the majority of it in the hospital, I suppose. Emily is doing well. She has been home for 3.5 weeks straight right now, knock on wood! She is having some more severe gagging and retching spells lately, and I think we are missing a key piece of this puzzle. I took some video of the spells for our GI. She starts out by gasping for breath, like her airway is shut. Then she gasps and gasps and finally gags and retches. I think it is possibly some sort of airway spasms, that we haven't realized before. I always call it retching when I talk to the Drs, and so they call it retching. The nurses in the hospital and walk-in clinic always ask me how long she's been coughing and I tell them "That's not coughing, that her retching". Duh. Perhaps I should have not thought I knew everything! LOL Anyway, I sent some videos to the GI and hopefully we can get her opinion and a referral to an ENT immediately. These spells have been longer and scarier lately, and honestly if we don't hear back from her within a day or two we may end up in the ER. We have a pulse ox machine that a friend sent us, and watching her O2 sats plummet during these events is pretty scary. Other than these spells, Emily is very stable. Her seizures are well controlled, and the small ones we do see are almost always stopped by swiping her VNS. The VNS has been awesome for her!
We went yesterday to my Grandmother's house for an early Christmas with her. We took lunch, and I made a fun Christmas cake. It was a great visit. I love seeing her with Emily. :)
Today it is raining ... our backyard is a mush puddle. Alex's parents are in town until tomorrow, so they are going to come sit with Emily for a while and Alex and I are going to go out. Souplantation for lunch, and the last Christmas shopping. It will be nice to go out, alone, with my husband! It's a super rare event in our house.
I hope everyone is doing well. I know I don't get on here very often and update. I miss blogging .... I have a goal of blogging more. Hopefully I will be able to! :)