In the past two days every bit of good news seems to come with some bad. Early, early yesterday morning Georgia's fever broke. Morning rounds came with a mixed jury on if she should have the CT scan or not. The attending looked at several factors and said we didn't need to have it done... today. He said if her fever goes back up they would try and get her in over the weekend but if that couldn't happen they would just start her on a new anti-fungal medicine and do the scan on Monday. Luckily the fever has stayed at bay, her temperature has been up and down but nothing that is actually considered a fever.
They were able to narrow in on the type of bacteria she is fighting in her blood, a type of strep that seems to be responding well to the new antibiotic. Yesterday Georgia seemed better, she hadn't throw up in 24 hours and she had little windows where she would engage with people versus just sleeping. I have been trying to find the delicate balance of getting her the right amount of pain meds without causing her to itch. We upped her dose of diloted yesterday but by night time she was itching again, she was also grabbing at her throat so I was concerned that she was having a bigger reaction. I noticed a new sort of wheezing sound that was different from the gravely sound of mucositis. Upon examination this morning it was determined that she has Stridor which is an inflammation in the upper airway. There is concern for someone Georgia's age having stridor because she has such a small airway, so far her oxygen saturation has stayed really good so my hope is that day 10 is our peak and things will improve from here. Georgia was supposed to get IVIG today which is a blood product, something that we got at the SCCA, something that she reacted to because of the stridor that has been postponed until tomorrow. We tried a new pain/anti itch medication called nalbuphine with the diloted which seems to be helping but my poor little bug is pretty miserable. Georgia received her second dose of Albumen which is a protien in the blood, when this level is low it can leak out into the body and cause puffiness. Her dose yesterday raised her level but not as much as they'd like so she got more today. She also got her (I believe) 11th infusion of platelets today, something commonly given during transplant, even more so if fevers are present. Her weight was up this morning which actually a bad thing, they don't want her body retaining fluids that would make her organs work harder, we are outside of the obvious window where weight gain would be a possible sign of VOD (veno occlusive disease) which impacts the liver but we're not totally out of the woods either - something that will continue to be monitored. Last dose of methotrexate, post transplant chemo tomorrow.
If you're listening world... We're done, our plate is full, we have all that we can handle... it's time to move on.
I am so glad you are sharing all of this info with all of us out here. No one ever hears this side of the trials and tribulations of those going through this ordeal. It breaks my heart every time there is some new affliction attacking that sweet child!! I read your posts out loud to Dave and I choke up every time and have to stop for a few minutes to gather myself. You know I have been through some things concerning my children but comparativly speaking... You have far surpassed what I went through. I can not imagine being where you are right now. going through what you are going through every single day and night with no repreave. My heart breaks every day as I think about what you are going through and then I close my eyes, say a little prayer for all of you and take a deep breath. I then visualize look forward to when you are home and when Georgia Girl gets to play outside and have play dates again and gets to go to the mall again and do all the things she loves to do and that my dear is when I smile and go buy some little token for Georgia that I hope will make her smile if only for a moment!
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