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Tuesday, August 16, 2011

Video I made for Bailey

Monday, August 8, 2011

Things just got a little bit more crazy

As most of you know Bailey was hospitalized from Tuesday evening until Saturday afternoon for what they are calling a Metabolic Crisis...

Glossary - Metabolic crisis

This is a serious health condition caused by low blood sugar and the build-up of toxic substances in the blood. Symptoms of a metabolic crisis are poor appetite, nausea, vomiting, diarrhea, extreme sleepiness, irritable mood and behavior changes. If not treated, breathing problems, seizures, coma, and sometimes even death can occur.

Metabolic crises happen more often in people with certain metabolic disorders (some fatty acid oxidation disorders, amino acid disorders, and organic acid disorders). They are often triggered by things like illness or infection, going without food for a long time, and, in some cases, heavy exercise.

Last Friday we had what we thought was a great GI appointment. They felt she had gained enough weight to try and stop feeds. Great news right? I was a little apprehensive because the last 2 times we tried to stop feeds Bailey became dehydrated and we had to start them back up again. Her GI team assured me she would be fine as long as I made sure she drank alot and continued to give her extra calories by mouth. Bailey did really well until Tuesday morning.

She woke up Tuesday feeling terrible and then started vomiting, she continued to decline all day even after taking her to her Pediatrician. By the time I took her to the ER she was lethargic, wasn't talking, and hadn't peed all day. All I can say is THANK GOD we decided to go to the ER, I don't even want to think about what could have happened. Her Glucose(blood sugar) was dangerously low and her white blood count was almost triple! It took them 2 days to restore her fluids and her blood/urine tests showed signs that her body had started to shut down!

They say this is NOT because of her feeds and the last 2 times probably weren't either, they simply aren't enough to cause that much of an issue. A bunch of Specialists including her Genetics doctor and students joined forces with Bailey's NIH doctor and tried to come up with a reason her feeds have been masking something to where she can't be without them. Of course we have NO answer and they all believe it is due to Bailey's famous underlying issue that NO ONE can figure out. So now instead of just trying to find an underlying issue like the last few years we now have a critical issue to deal with. She is going to be closely observed and we have to be so careful of her getting sick because sick could throw her into another metabolic crisis and she can also no longer fast before tests (she has several coming up) because that may cause dehydration which could again throw her into a metabolic crisis. We are waiting for her follow up appointment with Genetics to hear the full plan and discuss the future while we await possible answers. It's a strong possibility that I will get Glucometer to test her sugar when/if she starts acting funny so I can act accordingly based on what it says but for now she has a fluid intake amount she has to reach each day and they restarted her feeds and we will try to wean her very slowly(1ml a week) and see what happens.

Out of everything Bailey has been through in her little life this was by far the most horrible thing I have ever had to watch. At one point they couldn't wake her up, the thought of losing her became present and it was the worst feeling I've ever felt. I've never been more terrified in all of my life. I hope to God that this never EVER happens again.

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."