Hello all! Finally getting chance to send another update. We've had a busy morning, but a much better one than yesterday's for sure!
Click on "Read More" below to continue reading this update. . .
Hope had a good rest of her day yesterday as far as her pain being tolerable with the pain management routine. We were very thankful for that! Then in the evening, just after receiving her next dose of IV Toradol for pain, Hope's IV fell out of the vein and quit working. This meant that her continuous IV Morphine was no longer able to infuse. The process of getting her IV replaced in the other hand was a very miserable one. The first poke involved a lot of digging for the vein as it just wouldn't hold still and cooperate! And the second poke hit the mark so well that blood went everywhere and made such a mess that the bandage wouldn't stick. The nurses were great though and although it took some time, they preserved the IV site and finally got Hope's bloody hand taped up with a working IV site. . . YEAH! Hope's eyes were red and puffy, and she was exhausted from all the screaming and crying. And little Gabs had shut the door for the nurses to try to contain the screaming/crying noise and then went into the corner of the room to hide and cover her ears. It does makes me think how much God protected and poured grace over our Gabi girl through all the horrible nights and procedures over that 5 month hospital stay. Gabs is even saying that she might want to be a nurse, although times like last night make her think, "maybe not," she said! She will certainly have a very real picture of what nursing involves and I personally think she'd be an excellent compassionate and knowledgeable nurse! : )
Hope was off her IV Morphine for about 1.5 hours and her sats had already been ringing low off and on all evening, so I was hoping and praying for that not to get worse overnight as our exhausted little girlie went right to sleep after daddy and Gabi quickly gathered up and headed home to get Gabi girl to bed to for her last day of school this week.
God's grace and your prayers were evident, dear ones. . . Hope slept straight through until 5 am! And mommy even got to sleep from about 11:45 pm to 5 am, too! Hope allowed the oxygen mask to be by her face all night which helped the sat monitor to not ring off as much as the night before. And we used music to help drown it out. The night nurse also turned up the mask's oxygen flow over night to help keep her as high as we could. At 5 am, Hope woke up and in trying to move her legs got caught in the catheter and almost pulled it out, but thankfully was able to hold still and call for help so I could come and unhook her! It pulled off all the tape securing the catheter, but mom's extra piece of tape at the top held on and so no damage was done. . . phew! I fixed it back up for her and she went back to sleep feeling quite comfortable.
Her IV Morphine was turned down (in half) at 8 am. Hope was so tired that when I tried to wake her so we could try some gradual sitting up and maybe eat some breakfast, she turned and said in the sweetest little voice, "No thank you, mommy, I'm going back to sleep!" After which she was snoring fast asleep in all of 10 seconds! So I let her sleep in until about 9:30 am when a very special surprise came and we asked her to wake her up. . . it was SARA!!! The wonderful music therapist I introduced you to in the video yesterday! So Hope was quite willing to fight the heavy eyelids for a special jam session with Sara! Sara started soft and sweet music and then by the time she made it to the fun old interactive songs the two of them did in the past, like Down By the Bay, Hope was in full swing and participating with a grin from ear to ear! Love the special gift of our sweet Sara!!!
And from there Hope's morning has been hopping! And in a good way. . . thank you dear Lord for your healing mercies!!! I started slowly bringing up her head a bit at a time, and Hope had no nausea! I did have the night nurse give Hopey a dose of anti-nausea medication before she left at 7 am, just to make sure Hopey did well this first morning of being upright for the first time in 2 days. Hope did complain of a light-headedness, which is normal, but did well otherwise. Hope started taking some fluids and did great with them. Hope also gave permission for a student nurse to remove her catheter. . . she can't wait to tell Gabi, a possible future student nurse, all about it! We all chuckled at how much God has allowed Hope the ability to be in tune with her body. I always say that if Hope says something, I listen, because she is most often right on! She has been saying ever since coming out of surgery that her bladder feels full, like she has to go to the bathroom. And although it was draining fine, I would often come and need to work with it to drain as much as I could because Hope said she felt full and like she had to go to the bathroom. Well. . . after the catheter came out, immediately Hope asked to go to the bathroom and so we took her and she peed 400 mls!!! That's a very full bladder (when Hope had urinary retention last year, after 24 hours, she would need to be catheterized and would drain about 500 mls)!!! So the catheter hadn't been draining great and so that's why she was having that discomfort! And so another reminder to listen to our girlie and the ability that God has given her to understand and communicate her needs!!! She said afterwards that her belly felt much less full! Yeah!!!
Hope's IV Morphine was completely turned off at 10 am this morning. Hope has been eating and drinking well today and her IV is unhooked now! They even let her take off her oxygen sat monitor while she is awake and has someone with her. So after a quick wash up to feel refreshed, she has on her jammy pants and looks and feels much better with NO attached lines at the moment! Her pain control is pretty good. She is on just oral pain meds now (Tylenol and Ibuprofen) and they work fine for her being comfortable lying in bed. But she has been up to the bathroom again since the first time, and afterwards showed a large amount of increased abdominal swelling which is very painful. We think it is fluid that is moving and shifting when she is upright. So being upright is fine as far as nausea and headache go. . . so no CSF leak suspected. . . praise the Lord!!! Likely this fluid is from having the abdominal surgery and should be absorbing, but seems to be lingering and not as noticeable until now that we're getting her up. So we'll watch this and report it to the doctor/neuro nurse when they come by later today to see if they feel it is normal or concerning.
So, the neuro nurse just stopped by and they do want to keep Hope in the hospital another night, and if all is well then we can go home tomorrow. She was able to look at the amount of swelling and fluid accumulation Hope has, and it is notable and will need to be watched as they usually like to see it absorbed by about 1-2 days and Hope's has increased instead. So we will watch it and have an appointment to come back and see them in 3 weeks to see if all is well by that time.
So you can be praying for that. And for continued good pain control with that extra source of pain in the fluid accumulation, especially when upright. The fluid is accumulated in the muscle layers, mostly where the pocket was created for the pump. So that is why her muscles are so sore all the way across the front of her abdomen and around the right side and to the back where all the pump hardware and catheter was tunneled, and where the fluid is causing the swelling and pressure shifts with being upright. Also prayer for another good night's rest and no major issues with low oxygen levels and noisy alarms! : )
Thank you again, dear ones, for your most wonderful and thoughtful notes of encouragement and your faithful prayers. . . you are such a blessing to our family! Hope has continued to have visitors of past hospital staff that we have got to know over this past 2 years. . . lots more sweet reunions and catch-ups today again! So many lovely people that God has surrounded our sweet girlie with in her journey to recovery. . . near and far! You are so very loved, dear ones!!!