Lolly Update- September 15, 2010

Today's update-
We've been given so much information, and it's hard for me to remember what I've already told you...  I've been asked several questions, so I'll try to answer all of them as well.

Ben and I are both here with Lolly at the hospital.  Sammi is still nursing, and does not take a bottle, so my mom is here to help me take care of her.  My mom and dad drove down from their home in Casper, Wyoming yesterday.  My dad got here, slept a few hours, then drove right back home (it's a 14-hour round trip).  My grandparents live in Rexburg, Idaho, but have a condo in SLC that we usually stay in when we are down here.  The condo is about 15 minutes from the hospital, so it's a huge blessing to have someplace so close. 

My sister, Kelly, has two little kids (Nash who is Lolly's age, and Bridgette, who is a little older than Sammi).  Kelly lives in Cedar City, and left Nash with family and drove up yesterday to take care of my kids for the week (she's an angel!!!).  Ben's parents will be back in town on Friday and will help take care of them after that. 

Lolly is on "the floor" at the hospital- a step down from the ICU (which is good).  Since it has been determined that Lolly's sickness was caused by E. coli and that she is not contagious, Sammi is allowed in the room with her (although we would prefer to keep Sammi out of the hospital altogether, it really is not possible, so we are grateful she can be in the room with us).

As far as Lolly's diagnosis goes, I really don't know a lot about Hemolytic Uremic Syndrome, and I know even less about kidney function (we sort of specialize in hearts at our place)...but we're learning.  The main concern right now is Lolly's kidney function.  Today, her lab work actually showed that her kidneys were doing worse today.  They carefully monitor every drop that comes in and goes out, and she hasn't been urinating enough.  Before putting her on dialysis, they are trying diuretics (which Trey is on- to make her body pee).  Her face is quite puffy today because the fluids just aren't coming off- due to her poor kidney function.  They gave her an IV diuretic about 12:30 this afternoon, and she hasn't peed since then, which is not good.  Her face is quite puffy.  This morning, it was decided that she would not need dialysis today, so she has been allowed to eat and drink- but she hasn't wanted more than a few sips of Gatorade.

The doctor just came in and I got to meet him for the first time.  Lolly is currently in kidney failure, and is scheduled to have dialysis tomorrow (although it might be cancelled if she's doing better).

Another concern is her blood count.  Her white blood count is too high; her red blood count is too low.  She is anemic, and really doesn't have any energy at all- she has woken up for a minute or two a few times today.  She just sleeps and sleep and sleeps.  She will probably be getting a blood transfusion later tonight.  :(  The doctor did say that some kids with HUS do start peeing after they get a transfusion.

Lolly is not on any pain meds (except Tylenol for her constant fever) and is not sedated, but she sleeps about 99% of the time.  We keep hearing the words, "she is really, really sick" and her body just needs to rest to be able to fight. Ben said that this morning, before I got here, Lolly sat up when the doctor came in, and was perfectly calm (most of the time she just wakes up when she's very irritated)- she even gave Ben a high-five.

We're planning for quite a long stay here- up to two weeks (but hoping it's shorter!!!).  We've been told that the kidneys are very delicate- and take a long time to heal.

The best part of the day was when I was braiding Lolly's hair while she slept.  She woke up a tiny bit and asked for me!!!  I was so happy.  I asked her if she wanted to see Sammi, and she nodded, but before we brought her over, she fell back asleep.

I hope I've answered everyone's questions.  We just appreciate knowing that so many people care ((thank you)).  Thanks to everyone who has helped us out so much. 

Love,
Robbie