Day 1 back surgery

8-23-2011


After months and months of anxiety and the unknown Avri’s back surgery date has come up. I got a call Monday from Shiners Hospital. She said “we had a problem today in surgery with a kid’s antibody and thank goodness it was a smaller surgery, because if it would have been Avri’s we would have lost her.” She then apologized up and down but said we needed to come up with in the night to get Avri’s blood tested so they could make sure they had the exact match for units of blood she would need. They wanted to make sure there was nothing funky going on with her. So we made the hour drive to get her blood tested Monday night. After 4 pokes and a lot of manipulation of the tube the nurse finally got an IV placed in Avri’s arm. I told them I would flush her IV at home so they would not have to poke her again in the morning. We finally got home some time after 11:00pm. I could not help but think “this is not a good sign as to how things are going to go tomorrow”

4am Tuesday rolled around way sooner than any of us would have liked. Matt, Avri and I arrived at 6:00am. Avri has a touch of excitement mixed with a lot of anxiety. I want to turn around and run away and take her with me. It is hard to know this is not a life or death surgery so in a way we are choosing to do it. In the back of my mind I am thinking “I could lose her, 25 years of slowly going downhill and a big hump in Avris back is better than ending things now” but I have always said “if you can’t live life to your fullest potential then what is life worth”? Avri has been given the opportunity to improve the quality of her life by having her back straightened out. I need to support her in that. She has gone through the last few years of life hearing “Avri stand up straight”,” Avri sit up straight” We have done back exercises that frustrate the heck out of her. She gets side aches because she can’t get the full breaths that her body needs when she exerts herself to heavy breathing. She has also complained of back pain. This surgery is for her and I am going to see her through it.

She is given valium to relax but she still seems scared and anxious. We are taken down to “the basement” (seemed like it might be creepy) they had a photographer that took pictures of the curve in her back. They take pictures for the parents to see the before and after. They also use them for clinical studies. When we got back to her room she was given more meds to relax a bit more for the ride to the “holding room” I did not think it was working until they started to wheel her bed down the hall and she said “ya, this spine I have just doesn’t work very good, I can’t even walk with it” We all laughed out loud. I knew then the meds had kicked in. We were taken to the holding room for about 5 minutes and then we said our emotional goodbyes.

Matt and I were verbally prepared for this surgery. We were told this surgery was going to take about 8 hours. They use a machine during the surgery that takes the blood that is being suctioned up spins it, cleans it and puts it in a container, then is put back into her body. This process damages the cells so usually they still have to give more blood. They told us they had to units of perfect match blood waiting for her. They said she was going to come out of surgery in a lot of pain. She would be throwing up, tired, not herself, crying list goes on and on of what to expect. They repeatedly tell us “This is a big surgery” “this is the biggest surgery we do here” I wonder a few times if they are actually trying to talk me out of it, but then they end in “but it will be totally worth it”

We have been saying for the last few months. “we must have a big blessing in store because it has been one thing after another with home life. I was talking to a friend and said “I feel embarrassed to even talk about all that has gone wrong and all the stressors because it seems made up, I mean really….who goes through that much?”

Avri went in for surgery around 8:30am we got a call from the OR at 11:00am. “Avri went to sleep beautifully, she is doing wonderful. We are starting to put in the implants. We will call you in 2 hours” 12:45 they call again. “The hardware is all in. She is stable and doing great. We are closing. She will be out in 45 minutes.” They call again at 1:30pm “She is in the ICU; we will call you in about an hour to come down and see her. ….The surgery only took 5 hours. (Our first big blessing)

The surgeon came walking in the room around 2:00pm. He said “everything went so much better than ever could have been expected” “If all my surgery’s went this smoothly, I could do them every day for the rest of my life and be fine, there are some of these surgeries that turn his hair gray” He said “She is a dang strong girl” he said they got her straighter than they thought they would be able to. He also told us that she did not bleed as much as they expected so she did not need any blood other than her own. He placed 2 rods, 20 screws and 2 hooks. They did not change the amount of vertebra they were working on. They did not cut any corners but the lack of complications and everything just falling right into place took 3 hours of planned time off the clock. He did say for such a big girl this was all very unusual. (But great for a change) You can imagine my relief. All I could think of was that big huge blessing that we were waiting for and seeing it right before me now. I was hearing all these doctors saying how impressed they were, how this could not have gone any better, how strong Avri is. This is just what we all needed.

The anestisiologist comes in next. She is a very matter of fact lady but very kind. She said how nicely she went to sleep and how easy she came off everything. She tells us about the epidural they placed in Avris back for pain and about the pain pump she is on. She goes on to tell us that Avri was already awake and talking. At his point she starts to get tears in her eyes and she is choking up a bit. She says “I was telling her about the pump and explaining everything to her. I told her I was going to go talk to her parents now. Usually kids just say thanks all jumbled up but… As I was walking away she said “please tell my mom and dad how much I love them, then she closed her eyes and went back to sleep.” She said in all the 20 years of doing this nothing like that has ever been said. She said she was so unbelievably touched. She was so emotional at that point she got up and walked out without another word.



Matt and I went in to see Avri about an hour later. She was awake but groggy. She was very alert and knew what had happened. She never once cried or complained. She said she was good. It was a huge relief to see her moving all her fingers and toes. These surgery’s usually have monitors that they place on the head for spinal cord injury warnings, because of Avri’s shunts this part of the monitoring was not used. It was not a for sure thing that damage had not been done until she moved. We only stayed for about 5 minutes as the care team said to let her rest. I was in and out for the remainder of that evening. She had asked to watch a movie; she asked for some chap stick but for the most part was quiet and content. She did keep asking if they could roll her over because all this laying on her back was killing it. Around 10pm they rolled her for the first time. I was advised not to be there for it as it would be hard on me making it harder for her. If I could imagine the scene…She would let them roll her without complaint, if I was there I would have cried and lost it. She would have cried and lost it with me. I tend to have that effect on her. Against where my mind and body wanted to be I stayed in her room down the hall. I woke several times in the night thinking she needed me, hearing the door open and footsteps coming in but it was all in my head no one came, so I stayed where I was told to stay.