Thursday, February 7, 2013

Day 3 Update

I have to say that my admiration for Peyton is at a new high right now.  This poor child has endured more than most and just when you think she's endured enough, she pushes through something else.  Today she had her first ever {and hopefully only} lumbar puncture.  The Neurologist hoped to be able to do this without sedating her.  It was done right in her room.  He and the doctor from the PICU whose service Peyton is on were both in the room as well as a 4th year med student and a nurse.  Once the Neurologist was present, it was non-stop activity for the next 30-40 minutes as Peyton was prepped, trays set up, consents were explained and signed, and so on.  I was also present in the room during the procedure.  They used a numbing cream on the area.  Peyton was turned on her side and tucked into a fetal position.  Now, Peyton likes to lie flat...period.  She does not like to be held down.  It was looking like we might have to reschedule for a date when she could be sedated.  However, they were able to keep her still enough for long enough to get the spinal fluid samples that they needed.  From my view {I was facing Peyton's front side}, I could not see the 3" long needle being placed.  It's not just a long needle, but it's a larger gauge needle.  I think you could drill a hole through the ice frozen over a river with that thing to do some serious fishing.  Ok, it wasn't that big, but it was sizable.  Peyton did get morphine during the procedure.  I do not think she felt much, if anything.  I think her biggest complaint would probably be from being held against her will.  Afterwards, they kept the crib flat rather than have the head raised.  This suited Peyton just fine.  She doesn't like to be on an incline.

She seemed to do well today from a respiratory standpoint.  Well, as good as it gets for her.  I discussed again with the doctor the fact that what we are seeing here is a decline in her overall condition.  She likened it to someone with muscular dystrophy {not what Peyton has}, where over time you see the muscle weakness and eventually internal systems become affected - heart and lungs being the major ones.

There's not a whole lot more going on just now.  We hope to be out by the weekend.  Perhaps we'll be home sometime Friday.  Her g-j tube is due to be changed out next week and we are hoping to have that done before we leave here.  It would save us a trip back next week just for that.

Aside from all of this, the samples from the lumbar puncture will be on their way.  This is part of the studies that Genetics at Children's Hospital Boston needs.  It's not related to this current hospital stay.  I did email Peyton's Geneticist up there to let him know she's in the hospital and that the lp was being done.  I heard back from him.  He let me know that they have begun the gene sequencing with the blood sample of Peyton's that was banked up there when we were there in August.  There appears to be some sort of technical difficulty at the moment, but they hope to have some results within a month.  If you are unfamiliar with genetics testing, just know that tests are not done overnight.  It can take days, weeks, or many months before there are answers.

I just want to thank you all for your incredible support for Peyton.  You have no idea how much it means to us.  Thank you all so much.  Please continue to pray for her as well as for a resolution to whatever technical issues are involved in that genetics testing up in Boston.

I will keep you updated on how things are going here.

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