10.18.17 Spine Surgery 7

Just finished the blood transfusion and it has made a big difference. Aimee perked up and was alert and moving. She did need some more morphine due to the movement, but she is doing well respiratory wise. She had also been retaining a lot of fluids and this is finally starting to drain too. Great progress! 

10.18.17 Spine Surgery 6

Finally had rounds and got a good long talk in with the surgeon. Aimee is going to have a blood tranfusion this morning as her hematocrit was at the threshold of 20. At this point she is not very alert, but we have started to see some brief eye flutterings. Hopeful the blood will help to perk her up. 

Once she has received blood, the plan is to very slowly start her on pedialyte through her g-tube at 10mls/hr. Knowing that her nerves have been stretched as a part of surgery, it will take time for everything to communicate properly again. She will remain in the ICU for now and we will slowly move from continuous morphine to as needed morphine plus oxi, tylenol, and ibuprofen. 

We hope to start seeing her more alert soon. 

10.18.17 Spine Surgery 5

Was planning to update after rounds, but they haven't happened yet still. So, no plan to communicate to you, but Aimee is stable. We haven't seen her awaken at all and she isn't responding to much. Not even a startle for blood draws or turning her over. She did have some extra boluses of morphine last night and a few other meds were added too. She was pretty dehydrated and heart rate was higher, so extra fluid boluses were added. 

Currently she is pretty pale and her blood count is (not surprisingly) low. The surgeon did say he didn't think she lost much blood, but he is always very optimistic. There is still a possibility of a tranfusion being needed. 

10.17.17 Spine Surgery 4

We are finally with Aimee in the ICU. It is so good to finally see her. She has been extubated to a vent with oxygen, which is on the same settings as her home bipap currently. She has sad sores, particularly from the arterial line in her wrist. They pulled the line and put on a pressure bandage to cover the artery, but the bruising is so horrible. She also has skin breakdown in other areas from laying on her front for so long. 

She is startling a lot. She isn't awake at all, just very agitated. Must be in a lot of pain, though she is on continuous morphine. There will be checks on her at least every hour and we will monitor pain and breathing throughout the night. At this point, we are just so happy to be with her. 

10.17.17 Spine Surgery 3

We just met with Aimee's surgeon. Aimee has not yet been extubated, but she is stable and will be tranfered to ICU over the next few hours. Once she is settled in the ICU, we will be able to be with her again. 

The surgery didn't go as smoothly as hoped and Aimee had to be kept under for a couple extra hours longer than anticipated. Her curve was really stiff, bones were too soft, and her pelvis was very tilted. Basically, when the tension from the stiff curve was put on the upper screws into her neck, the screws came out. Also, it was very difficult to get the lower portion of the rods into the base, because of the pelvic tilt. The surgeon ended up doing a workaround of putting a band around the back side of the upper spine to hold the screws. He was actually pretty excited about it and plans to always do that for his future cases. 

Another challenge is that the neuromontitoring was not successful with Aimee. Her nervous system wasn't communicating in a monitorable way. Although there is no reason at this point to expect nerve damage, they were not able to be certain. We know that Aimee's nerves don't communicate well, but this was disappointing and saddening to hear. 

The hope is that these rods will last for 4 cm of spine growth, which should be about 2.5 years. He hopes that the next 2 adjustments will only be done on the left side to attempt to straighten out the curve. They will be adjusted by ultrasound and magnets every 4 months if the curve is flexible enough that he can drive the left side straighter. If it is not, he will just adjust for growth every 6 months or so. Once it is time to replace these rods, it should be a slightly simpler procedure as he placed a fixed extension at the base of the spine to make it easier to place new rods. 

10.17.17 Spine Surgery 2

We just got an update that the surgery team has finished the first implant and is starting to work on the second rod right now. 

10.17.17 Spine Surgery 1

We got started early this morning, beat the traffic down to Seattle, and got going on the pre-surgery to do. 

So far all is going okay. I went back with Aimee, though they were a little hesitant with how full the room would be. There was already a dozen people in the operating room we came in and the surgeons were not yet in there. We asked that one of the IVs be placed ahead with ultrasound, since that went so well with the last surgery. It didn't go quite as smoothly this time. Aimee ended up panicking as they started running IV at the same time that they were attempting the gas. I was really glad to be in the room with her, but hate that her last minute awake was scared and in pain. 

Otherwise, all has gone smoothly and we should hear an update in a couple hours. It sounds like the biggest time variable is how difficult it is to place the screws and grafts at her neck. They hope to do this with simple x-ray, but may have to use a CT scan to get them in right depending. 

More scars and a taller girl in the works. Will update when we hear more. 

(Unfortunately I can't upload photos with posts from the hospital, so we will have to add a photo update later.)