Julia had a rough night. They were giving her hourly doses of morphine in the early evening to get the pain under control. By 8pm she was out cold and sleeping peacefully.
She slept until around midnight when the craziness began.
Julia's bladder is not happy these days. It has been really angry for about a year now. She has been dealing with monthly UTIs, bleeding, and partial blockages. After many ER trips, pain, and suffering- Dr. Hodges put her on prophylactic bactrim to buy us some time until her bowel issues are fixed. When one body system stops working, the surrounding ones go a little haywire, too. Julia's colon is so large it compresses her bladder. This has caused her bladder to thicken, spasm, and function poorly- neither of which are good when you drink lots of water and you only have one kidney. She will need a year or more of physical therapy, biofeedback, and, bladder retraining- but none of that can start until her colon is functioning which will likely take a year or more also.
All of this caused by cancer surgery, chemo, and radiation treatments. Unfortunately this is the price 65% of children diagnosed with cancer pay for their cures. Lives of side effects both immediate and down the road. Sigh... We need better treatments and we need pediatric cancer funding! In the past 40 yrs, we have only developed one new drug for pediatric cancer treatment, one!! ( You can read more about the plight of pediatric cancer HERE ) Want to help? Get involved in a CureSearch Walk or St.Baldrick's shaving event in your area. Research and development take funding and our kids can't do this alone.
I realized yesterday Julia was not peeing at all. They made the decision to catheterize her around dinner time. They got about 300cc's and she was able to sleep. They checked again around midnight. There is a handy little ultrasound machine that measures bladder volume. This machine follows us around every time she's in the hospital.
By midnight she had 600cc's. After much screaming she was finally emptied again. She was then awake until 6am this morning. Thank goodness for round the clock Noggin :) This morning when the scanned her bladder volume it was up to 740cc's- that's over 3 cups! Bad news. She had peed a few drops, so they gave her two hours to try and go on her own.
Dr. Pranikoff did morning rounds and said if she didn't start peeing by 8am, she was getting a foley catheter. We also need to back off the morphine because that can cause bladder retention, too. She can't take oral pain meds yet because she's not eating, but they decided to switch to toradol which is much longer lasting and will make her less sleepy. We are hopeful.
She finally started peeing around 8:30am! YAY! She was able to take a nap from 8-10am. The toradol was started at 10am and she is actually sitting in a semi-reclined position right now. This is big progress. We haven't had as many tears either.
So today we will try to get her moving around some and try to eat something. The surgical nurse practitioner is coming to train me to care for her Mic-Key button and start flushes. I met with the care coordinator to start the process of setting up home health care for all her cecostomy supplies. She's having fun playing and doing art with Stacy from ChildLife. Some of their little friends stopped by to paint and play Littlest Pet Shop. Now Ms. Betsey is coming by to do an art project with her.
She slept until around midnight when the craziness began.
Julia's bladder is not happy these days. It has been really angry for about a year now. She has been dealing with monthly UTIs, bleeding, and partial blockages. After many ER trips, pain, and suffering- Dr. Hodges put her on prophylactic bactrim to buy us some time until her bowel issues are fixed. When one body system stops working, the surrounding ones go a little haywire, too. Julia's colon is so large it compresses her bladder. This has caused her bladder to thicken, spasm, and function poorly- neither of which are good when you drink lots of water and you only have one kidney. She will need a year or more of physical therapy, biofeedback, and, bladder retraining- but none of that can start until her colon is functioning which will likely take a year or more also.
All of this caused by cancer surgery, chemo, and radiation treatments. Unfortunately this is the price 65% of children diagnosed with cancer pay for their cures. Lives of side effects both immediate and down the road. Sigh... We need better treatments and we need pediatric cancer funding! In the past 40 yrs, we have only developed one new drug for pediatric cancer treatment, one!! ( You can read more about the plight of pediatric cancer HERE ) Want to help? Get involved in a CureSearch Walk or St.Baldrick's shaving event in your area. Research and development take funding and our kids can't do this alone.
I realized yesterday Julia was not peeing at all. They made the decision to catheterize her around dinner time. They got about 300cc's and she was able to sleep. They checked again around midnight. There is a handy little ultrasound machine that measures bladder volume. This machine follows us around every time she's in the hospital.
Dr. Pranikoff did morning rounds and said if she didn't start peeing by 8am, she was getting a foley catheter. We also need to back off the morphine because that can cause bladder retention, too. She can't take oral pain meds yet because she's not eating, but they decided to switch to toradol which is much longer lasting and will make her less sleepy. We are hopeful.
She finally started peeing around 8:30am! YAY! She was able to take a nap from 8-10am. The toradol was started at 10am and she is actually sitting in a semi-reclined position right now. This is big progress. We haven't had as many tears either.
3 comments:
I am hoping and praying for full healing. It breaks my heart to see her like this... so much for a little Survivor to go through. But I know it will get better. She will heal and be complete again, and she will be THE survivor who speaks at all of our foundation fundraisers in all the years to come. Julia is our 1st Honorary Spokesperson. :) Vinny is 2nd.. Khalid is 3rd...
Love you,
Sarah
Oh dear Amber I am thinking of you and miss Julia. I will continue to pray for her recovery and your strength to make it thru all of this. Love u guys!
Praise God for toradol! Luke specifically wanted to "send Julia a message" tonight. We are praying for healing and quick recovery and more peeing!!! Love, the Dillards :)
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