Danielle went to the OR on Friday to have her shunt internalized. The surgery was scheduled to take approx. 4 hours. I had spent the night with her on Thursday and I bribed the nurse, aka. talked her into letting me hold her. The plan was to hold her and snuggle all night long. We hadn't gotten to hold her since she had her first surgery, so snuggling is something that Danielle thrives on so much, and so do we, it was long over due! This mama was SOOO excited!
It is quite a process, clamping her ventric just to move her. Then moving all of her IV cords and then getting her in place, re leveling her ventric and then making sure that her head stays in line. I held her for about 3 hours and she just melted in. It was so good for both of us. She went right to sleep, snoring away and all of the loud noises around that usually startle her didn't even make her flinch. She was out. It was so wonderful and in that moment, all seemed right with the world.
Just before midnight she got really upset and we put her back in her bed. She ended up being up all.night.long. I couldn't believe it! We tried our best to not talk about surgery around and in front of her, so I am not sure that she was anxious, but could have been possibly. She is a smart cookie and misses nothing, so she fully knew what was approaching. From then on, it was a rough night.
Friday morning right at 7am they came to take her to the OR. She was more excited to go for a ride in her crib I think that worrying what was going on around her. I just cannot imagine being in that position, as a little girl, going to a big scary place, again, for another surgery, something that she has had too much of. She is such a hero in my eyes, such a light and inspiration to me. And from a parents standpoint it is just gut wrenching, heart breaking and so so hard to see your child go thru something over and over and over again, that is out of your control.
Finally about 1145 the unit clerk came in and told me that there was about 30 minutes remaining of her surgery. Up until that point I had no updates at all. I figured while she was in surgery I would go down, grab some coffee, maybe breakfast and kill time and come back up to her room and wait. I didn't leave her room, I didn't even get out of the recliner. My tummy was in knots I was so nervous. I tried to sleep on and off because exhaustion was taking over, but my mind was restless think of and praying for our girl. Daddy was also anxiously awaiting updates and unfortunately we didn't get any.
Dr. Wilson came in and gave me an update after surgery, before she was back. He said that all went well. They put the shunt in on the right side and the Pediatric Surgeon ran the tubing THRU her Juglar vein along her neck and into her heart. I did not know ahead of time which peds surgeon would be assisting him in the OR. I was more than pleased to find out it was Dr. Pitcher. We know Dr. Pitcher well, he is the amazing doctor who did 3 hernia surgery's on Dylan. He is a world renown doctor and just a wonderful person. That instantly gave me some comfort. Dr. Wilson did warn me of a few things. That the tubing although in her vein, can move. She will need to have xrays and tests done 1-2 times per year to make sure that the tubing is in the correct place in her heart. Also her movements can move the tubing. This scares me to death. So something to watch for and make sure we don't put pressure on her neck or chest, also the only way we could know if there was a shunt malfunction, is a blood clot. EEEK. A blood clot, in her heart. ugh. this stresses me OUT!
So over the weekend the plan was to just watch her, make her comfortable and let her rest in the PICU. Well she came back from the OR looking really comfortable, but right away I warned the resident doctor, you have got to start extra pain meds because her looking comfortable could change in an instant. Well they didn't listen and guess what, her pain went from 0-10 like NOW. I was so frustrated. The next 24 hours were spent trying to manage her pain. She doesn't really respond to morphine and they wanted her to have that in larger doses, and as I told them would happen, she didn't respond to it. As a parent constantly being on them, its just so hard. My only frustration all along is repeating over and over and over again what works and doesn't to so many different people. They finally put her on Dilaudid, which is a lot stronger and it worked. They wanted to avoid the stronger med, but just couldn't. They also did a MRI and shunt series, which are x-rays to make sure that her shunt was in a good position after surgery. Well the results came back and the doctor came in and told us, the tubing in her heart had already moved. Remember how I said it could move around, just in the few movements she had made a few hours after surgery, it had pushed down further into her heart. This makes me so nervous. There is nothing that needs to be done about it now, but she needs to be closely monitored.
Saturday morning we first noticed that her incision was leaking. This ended up being an issue all weekend long. It was the incision where her previous ventric was and it would go from not leaking at all to leaking a ton, really quick. Sunday morning they decided to do another MRI to get this figured out. because in the midst of her leaking fluid she also started throwing up a lot. They did the MRI and all during the day it kept leaking on and off. So the glue they put on wasn't working. I held her yesterday for about 5 hours and all of a sudden I would feel something wet, her CSF had leaked all over my shirt, its pretty crazy to think about when you realize that its just not fluid, its spinal fluid!! They decided to put in another stitch last night and so far that seems to be working. It is a little unnerving to think that an area of her incision could have been open enough for a new infection to get in. I don't want to think that way but it does make me nervous. They had stopped her antibiotics on Saturday. I am waiting to hear if they will re-start or what they will do. At this point she is still in Intensive Care.
So things have been just ok, I would say. Not as smoothly as we would have hoped. We still really appreciate prayers and positive energy being sent our girls way. I do not know what today or this week will entail at this time. I pray that our girl will heal, be comfortable and be able to come home with us very very soon. Thank you for the prayers and thank you for checking in.
Celebrating our favorite person today!
9 months ago