Monday, September 20, 2010

Lolly was sleeping when I came in this morning.  I was able to spend a few hours with her- now she's napping again.  She seems to feel okay, but she doesn't have much energy at all and is getting very tired of being here.  I think the "enduring to the end" of this hospital stay might get a little hard for Lolly.  She likely will not be able to leave her hospital room at all while she's here (because of her E. coli).  When Trey has been in hospital, he lived for the times he could leave his room (because he knew nothing bad would happen to him outside his room).  He loved riding in the wagon and going to the playroom...and there was that time my dad took Trey in a wagon (at the time he had chest-drainage tubes and collection boxes and an IV pump stand) on a walk down the road by the hospital...I'm surprised no one called the cops.  :) 

Lolly has been very thirsty, and her diet plan is 24 ounces of NePro formula every 24 hours.  She can have all she wants to drink, and gets whatever is left over down her tube.  It is really thick, but doesn't taste bad at all (we had a taste-test this morning), but likely doesn't really quench her thirst because she's constantly asking for juice.  At first, she was very grateful for every drop of formula, but she's still just so thirsty, and it's not quite cutting it.  They've changed her feeding plan, and she now gets watered down formula, plus 60 mls of water (4 Tbsp.) and 60 mls of juice every 24 hours.  We're trying to pace her so she doesn't use up her alottment of the good stuff all at once.  She's being stubborn, and won't drink ANY formula right now, so we're feeding her through her NG tube today.

(clean and braided aftr her bath)

She had dialysis early this morning, and she finally looked more like herself (her eyes have been so puffy).  Her platelets and red blood cell count are low, so she'll get another blood transfusion later today.

The nephrologist (kidney doctor) said that although Lolly has come a long way, she's really not getting better at this point.  Signs of improvement in her condition would be regular urine output (she's only peed once in about a week) and her platelet and red blood cell counts improving (rather than constantly decreasing).  He said to plan on at least a few weeks here.

I'm trying not to stress about all the details of working things out.  It's crazy to think that although I'm a stay-at-home mom, it is requiring the help of THREE other women to take care of all my kids (my m-i-l is watching all the boys), my mom is helping with Sammi and Lolly, and a nurse is taking care of Lolly.  The big boys are doing great, and would be happy to stay at grandma and grandpa's forever, but Luke is a little stressed out.  He is a homebody (like me), and loves his routine.  I'm sure he misses his best friend (he and Lolly did everything together- meals, play, baths, naps, bedtime, etc.).  A big part of his life has been changed.  My mother-in-law takes wonderful care of him, but I'm worried about him.

Sammi has been an absolute angel.  I can't even tell you how wonderful she's been.  We're trying to keep her away from the hospital as much as possible, and my mom was able to get her to take a bottle!!!  Mom said she cried and said, "mama" a lot at first, but she's doing really well.  I'm glad to still be nursing some of the time so I can have her with me.

 One last thing- the neurology team came by today and said that after reviewing her EEGs, they are quite certain that Lolly was having seizures.  She will continue on her Keppra medication for the time being.  We've noticed that Lolly gets anxious and angry after each treatment; they've also been giving her Ativan to help with the anxiety. 

I was able to help give Lolly a real bath this morning and wash her hair.  She was worn out, and slept while I braided it.  Her bed head gets out-of-control here.

Lolly has been having major trust issues- if someone she doesn't know comes into the room, she pretends to be asleep.  She keeps telling me she wants to go ("ah go") and that she thinks her formula is yucky. 

She's such a good girl.