For surgery they wanted to go in with a small camera, in an incision above her belly button, and look around. Then Neurosurgery was going to be working on the top part of her body and removing her shunt. The really good news was that neurosurgery was able to remove only the part of her shunt that was in her tummy, they did NOT have to take out the part that is in her brain. That was HUGE relief. That part had not been infected and it is pretty traumatic having surgery in your brain and if they could avoid it at all cost, that is what they were going to do.
The Pediatric Surgeon was not able to look around with the camera so sadly, she had to make the incision quite a bit bigger. What she found when she was in there, was that the shunt tubing was adhering to Danielle's intestine. There was a large part of her intestine that was VERY angry. She said it was moderate to severely irritated and angry. She described it as if you get a cut on your arm, and it gets infected, and red and inflamed. She said a part of her bowel was the same way. At that point she pretty much ruled out the partial bowel obstruction, but rather it was inflammation that was causing a lot of the issues.
She was able to thoroughly rinse everything out. move things around and take a VERY in depth look in there to see if there was any type of abscess etc. Nothing. So Neurosurgery took the shunt tubing out and she cleaned out the rest and looked around and that was about it. During surgery Danielle's blood pressure dropped quite a few times and did get pretty low. So they were keeping a very close eye on her to make sure she recovered ok.
When she got back to the room and was intubated, with the breathing tube. I was not surprised and quite frankly this was going to help her rest more peaceful over night and let her rest and not worry so much about breathing and resting. Well we quickly learned that her level of pain was high. She was very uncomfortable. Flailing around quite a bit and over the night it took up'ing her pain control meds quite a few times plus adding in sedatives several times. This absolutely broke my heart but it was needed. Her labs also came back and her hemoglobin had drastically dropped after surgery which meant she needed a blood transfusion ASAP.
Thursday morning she was showing signs that she was ready to get that breathing tube out. She was starting to wake up a little bit and flutter her eyes about. I talked to her and she immediately started to cry. It absolutely broke my heart.
Yesterday afternoon they were able to take out the breathing tube and just have her on regular room air. Poor little peanut tho is so painful and sensitive. You can tell she doesn't feel good. Any little noise makes her scream and cry and she really just wants you to sit beside her and hold her hand, it absolutely breaks my heart.
A couple other things going on. She has a catheter in because they want to monitor her bladder pressure because they did surgery in her stomach. She also has the ventricular drain in, coming out of her clavicle. So because the top part of her shunt, in her head, is still in place her shunt is still functioning. But they took out the tubing that goes from the clavicle so it needs to be able to drain some where. So they have a tube coming out of her clavicle area and draining into the drain like before. Because of all of this, we aren't able to hold her. Last night I was able to make some silly noises and get her to smile. But really she just wants loving right now and that's what I want to give her. She is so deserving of that and more, it breaks my heart.
We will continue to keep you updated as we learn more. I need to meet with the resident now and see what the findings of today have been. Stay tuned for more updates. We really appreciate all of the prayers that you can send our way and give our girl.
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