Aug 23, Thursday, We are pulling the picc

3:00 pm.
Her fever has slowly increased and is now at 102.6.  Her heart rate and breathing has increased, which happens with the fever.  She still feels nauseous but hasn't thrown up, even after discontinuing her feeds for 36 hours. Basically she hasn't eaten for 1.5 days.  To the rest of us, this is not a big deal, but to a girl on the Berlin, it is.  She is on day 8 of 10 on IV antibiotics. So there isn't a major roaring infection.  In rounds this morning they took a fresh look at everything she has going on, meds, feeds, fluid, blood counts, etc.  Interesting how the young MD's rattle off a lot of stuff and the more experienced doctors boil it down to 2-3 items and then ask Stacy and I questions.  She slept good last night, but has felt lousy all day.  She went to school, again kicking and screaming, and even did a little therapy. But as the fever has increased, her energy has gone down.

They have just now decided to pull the picc line and start a regular IV.  The picc line has been in for 70 days and could be the cause of the fever.  Lindsey is pretty upset and crying because now she will have to be poked for blood draws and IV's.  They have also discontinued one of the clotting meds.  They started a 3rd clotting med on Monday afternoon and by Tuesday morning the tummy pain and nausea had started.  So they are going to discontinue that med and see if that helps.  Her blood count is down around the 23 mark and she is flirting with a blood transfusion.  It's amazing when she is not feeling well, how much the monitor goes off.  It 'beeps' warning as her pulse and breathing raises from the high fever. So as I am typing this, I keep turning around to see why the monitor is going off.  Stacy is calmly sitting over there with her legs folded reading 'A Gable Faces East' trying not to fall asleep. I'm so glad (lucky) I married that woman.

So basically they are going to: 1- Pull the picc line, 2- start a new 'regular' IV, 3- discontinue the 3rd blood clotting med, 4-hold off on all blood draws for 48 hours, and 5-start the feeding. Hopefully this will help with the fever, nausea, and low blood count.   Other than that, she is doing just hunky dory!  Hunter and Gage is driving her nuts, and nothing is funny to her right now.  She should be back to 'Jabber Jaws' when she is felling better.

Sierra is getting the 'Baptism by Fire' at Jordan Middle School.  Her homework has hit.  We are still trying to find the best routine for her and Megan to do their homework.  They both really want to be here with Lindsey, but there is just too much chaos.  One of us will need to go home with them to the RMH so they can focus.  They are still trying to find their place in a big school and new environment. Lunch has been a pretty lonely time, but they are figuring it out.  They both really miss PV and their friends.  Today I rode halfway with them on the bikes to Hansen's, they just wanted help getting to and across El Camino.  I figured so, it was time.

Been a bit discouraged today.  I know we are blessed, that God does and has heard and answered our (and your) prayers.  Lindsey is doing so much better than before.  All I have to do is look at posts from late June early July to see that.  But.... I try so hard to help Lindsey on walks, going potty, and coping with her situation. I keep wondering how long this will go on?  How many more weeks / months?  How long before the donor and the donor's family is prepared.  Lindsey is strong, but she needs her Mom and Dad here to keep her strong. (more beeping)  Last night Stacy and I both went home to get the boys to bed and help Sierra and Megan with homework. By the time I got back to Lindsey, she was all worked up in tears and feeling lousy.  I'm still sleeping here with Lindsey, and probably will for awhile.   Even when she feels good, she sleeps better knowing someone is here. Who knows when Stacy and I will actually sleep together.  I'm also gaining weight and that is tickin' me off!

So there you have it. Sometimes I just need to vent. I know it will all work out, that God is in control and we will be stronger for it.  I know that and truly believe it.  We have wonderful people back home and here in Palo Alto supporting us.  But sometimes this just sticks! 

Enough pitty party. I feel better now.  They are here to start the IV, and I need to go pick up the girls from Hansen's place and get them home to start homework.

Forgot to add some pictures from the 22nd, The day they FINALLY let her go outside for a breath of fresh air.  It was fun walk to take to the Stanford side.  The last time she had been out was on June 17th.