We're Still Here, But Not In PICU!

I just realized that my blog posts have not been publishing!  So, I will try to get everyone up to date.

We spent the weekend in PICU trying different medications to lower Piper's blood pressure.  We finally figured out the correct combination.  Her pressures have been staying in the one-teens and one-twenties.  That is good for her.  The dieticians have finally created a recipe for a formula.  She is still receiving the formula through the feeding tube.  We were moved out of PICU on Monday.  They moved us to the step down unit.  We were then moved to a regular room on Tuesday. 

She had dialysis on Saturday, Sunday and Monday.  Three days in a row was a bit much.  She typically will only have it every other day. 

This morning the dialysis machine pulled up to her room before she was even awake.  3+ hours later, she was done.  Next she had to have a needle and dressing change for her port.  Then the speech/language therapist came by.  Now she is getting some Zofran in preparation for her to start chemo again tonight.  She will only have chemo every 3 weeks for a total of 9 weeks or 3 times.  This regimen should be a lot easier on her than the prior.  We pray that she will be able to handle the dialysis and chemo together. 

We thank God for bringing her blood pressure down.  We pray that He will heal her kidney and that it will start working well.  We thank Him for the continued healing that He will do in Piper.

Day 19

Piper is still in PICU.  The PICU Dr.s still don't think there is any reason for her to be here because she doesn't require "intensive" care.  Her blood pressure is still not great, but they are treating it with oral medications.  They have added an ace inhibitor.  She seems to be responding a little.  The PICU Dr.s are going to plead our case again today to the hem-onc team, and maybe they will let us go to a regular rolom again.  I am not counting on it, though.  It would be especially nice now, though, because big brother Alec came into town yesterday.  We can't all visit at once in the PICU.  Only 2 grown people at a time.  So, please keep praying for Piper's blood pressure and that we will be placed in a regular room soon.

Still in PICU

Day 18, I think?

Piper is still in PICU.  She is still battling HBP.  Please pray that the Dr.s can get it lowered on oral medications and soon!  She is doing well, otherwise.

Yesterday... During Dialysis

Here We Go Again...

We are being moved back to PICU tonight.  Piper's blood pressure won't come down and stabilize.  Please pray that this gets resolved for her soon!

It Was A Great Tuesday

To God be the glory!  Our baby girl is starting to feel better!  She has still had her share of issues, but she is showing improvement every day; both physically and mentally!

First, the rough stuff ...  Her blood pressure continues to be an issue.  The Dr.'s are trying a variety of medicines to help get it under control.  We need it to be lower and stable.  She has been throwing up each morning.  We assume that is due to issues with her eating/digestion.  She will remain on the feeding tube for a while longer.  They want her to sleep in her car seat inside of the crib.  That should be interesting, but it will keep her at a 45 degree angle.  They are also giving her a regular schedule of Zofran.  Zofran is the wonder drug for chemo patients.  It helps with nausea.  She is still not peeing enough.  We need a big increase in her urine output.  She will have to keep having dialysis treatments every other day until her kidney fully recovers.  We need this to be soon!  Please pray for these issues to be resolved quickly for her.  She is getting very frustrated with the whole process.

Now, on to the better stuff ...  :-)
In the past 24 hours Piper has been working hard to learn how to sit up again by herself.  She wants so much to just get down on the floor and play!  She did sit up in her crib and play a few times yesterday.  She had so much fun playing last night!  She was smiling and laughing so hard that her little self was bouncing in the bed!  We have also seen some improvement in her kidney scans and function over the past week.  We need a lot more pee, though!

Today we thank God for her smile and her laugh, all of the people taking care of her, the healing that He is continuing to do in her, and for our friends and family!

Piper Rose Bell

Lounging on her side!