We finished our surgery on Thursday of the spine about 4 hours later than expected. Instead of 2-4 hours, it took a full 8 and that wasn't including prep time and time to get her upstairs into the ICU. The procedure consisted of a multiple laminectomy. This means, basically, that they took off a portion of the vertebra in order to get into her spinal canal and remove the tumor. The neurosurgeon thought, after the surgery, that he was able to get all of the tumor out, although there was damage to at least one nerve. This nerve would affect her right hip flexor. We are waiting to be able to get her out of bed and see how she moves her right leg. After talking with the general peds surgeon, we decided that it was better for her to wait until Friday to do the abdominal surgery.
Friday, Gabs went back into surgery at 8am. This was estimated to take 6-10 hours and involved a lot of working around her right kidney (including urator and main blood vessel from heart to kidney) and her two major arteries (aorta and vena cava). Amazingly, our surgeon showed up after just six hours (we expected much longer after how the day before had gone). He had a huge smile on his face and said he was able to get the entire tumor without damage to the kidney (and related parts) or the arteries. I can't explain how excited I was to have the waiting be over.
Unfortunately, it turns out that the first few days after surgery were even harder. She was so puffy and out of it (from pain and sedation meds) and in general seemed so ill. This was difficult to see, considering, despite the swelling in her face she was a happy, healthy toddler before the surgery. Each day was up and down. One thing would go great and then something else would seem worrisome. Her blood pressure was consistently high and she was feverish on and off for at least a few days. We were excited to get her off her IV drips and get the NG tube out of her nose (tube running through her nose, down to her gut to get out the bile that builds up). The NG tube is necessary because after such a long surgery the intestines "go to sleep" and take a bit to "wake up" again and really start working again. We are still working on this part of the process. She has started to have very small bowel movements but was having a lot of problems with with vomiting and we had to put her NG tube back in. She has either an ileus or obstruction. We are hoping and praying that this is something that can work itself out.
As of today, orders were put in to transfer us off the ICU floor but our regular floor (Oncology) doesn't have any rooms available. Our current concerns are her blood pressure (still high and only controlled through medication) and of course the issue with her intestines. Until they are working properly, we can't give her food or drink. Although she is on liquid nutrition (going on day 3) she hasn't had solid food in almost a week. It's a really strange thing and she's lost at least 4+ pounds already. Poor girl is looking so skinny and weak.
The good news is that her attitude has completely changed over the last day or two. She went from drugged, to melancholy and lethargic, to now actually interacting and engaging us. Not always happy, still very tired but she plays games and smiles occasionally and is really starting to feel more like herself.
Thank you, again, for all the many prayers and messages. I cannot express how encouraging they are. I know that I have not been responding as of yet but will try to as soon as we are able to leave the hospital and get home. This Thursday will mark three straight weeks in the hospital. What a strange month it has been. Please continue to pray for her recovery, it's been a long road and isn't looking to be over soon. Please pray for Jeremiah and I as well, all this time in the hospital is very wearing and we are both exhausted and running on very little sleep.