Scout update

This is an email from Merin about Scout on Saturday, 3/1:
It has been another long week,so I thought I'd fill everyone in.Last thursday (the 21st), we took Scout back to the hospital to get the feeding tube put in. She had been gaining slowly, but not enough, and then developed another head cold. Not being able to breathe through her nose, she didn't want to eat, so we decided the tube was best. She was to go in, have the tube placed , monitored for a few days, and then sent home. On Saturday, she spiked another high fever. We think she caught yet another virus, which of course would set back the weight gain. During this time, she started to get what I thought might be seizures. She would twitch her eyes, and her head would shake back and forth. The doctors finally witnessed it, and an EEG determined that she was indeed having some mini seizures. She was put on meds, and the seizures have stopped, but it was yet another unexplained symptom. More tests, another MRI, ANOTHER (this is the third) spinal tap, and all was normal. THey wanted to recheck everything because she hadn't started the seizures until we had come home from the hospital last time. During this time she was basically without food for 36 hours (they had to schedule, then reschedule the MRI, she needed to be without food for at least 6 hours prior because she was under general anesthesia). You can imagine our frustration with this, as every day counts with her. Needless to say, her weight gain this week has not been great. She is finally done with all the tests, and is allowed to just sleep and eat. This morning she was 7 lb 9 oz.... she was about 7 lb 3 oz when we brought her in. Right now she is on a continuous feed, and we are working towards getting her to bottle feed and eat every three hours. She will be in the hospital at least through the week, as we monitor her daily weight gain and see how to proceed. At this point it is really a medical mystery. There are several more metabolic tests that are still pending, and we won't get answers on those for a few weeks. She appears to be growing (although at the very low end of the charts) in length and head circumference, which is good. The doctors are as baffled as we are. They can't figure out the cause of the seizures, but obviously it is related to whatever is going on with her metabolically. They are not febrile because she was having them before she ever got sick. Through all of this, in keeping with her namesake, she is a little fighter. At one point while she was feverish, it took 3 of us to hold her down to suction out her nose. She is SO strong, hates being messed with, and will let you know this. She has pulled out her feeding tube several times. The nurses cannot believe how strong and stubborn she is. I will keep everyone updated as she progresses. I want to thank you all so much for your thoughts, prayers, emails, phone calls, visits, food, and overall support. We are confident that she will pull through this, and this will all just be something to hold over her head when she is a teenager.Much love,Merin and Kelly

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Sarah Dulina and I went to visit her on Friday, 2/29. We were both able to hold Scout and just spend some with Merin. CHKD is truly a wonderful hospital, and we are very fortunate that they are so close. They have provided a mobile, bouncy seat and swing for Scout to use while she is there. The nurses are all so nice and Merin has access to lots of specialists!

I spoke with Merin this morning and Scout is 8lbs! She is gaining weight and Merin is anxious to bring her home; however, she has had a fever off and on for the past two days. So, noone quite knows when she will be home.