Home Again

After three nights in the hospital, Addison was released on Friday to come home!! They did two fast act MRIs while we were in the hospital to check that the brain tissue was responding to the external drain and the internal pressure adjustment. So far, so good. We have a follow up appointment with Dr. George, our neurosurgeon, on August 3rd.

While we were in the hospital, Addie turned 2 mths old !!

It's amazing how much more I appreciate lazy home days after spending a few nights in the hospital. I actually slept surprisingly well while we were in the hospital. But it's reassuring to know she's hooked up to a machine that would beep if she stopped breathing! We were able to relax quite a bit since Addie was sleeping so much as the anethesia wore off.

Thankfully, Adam was able to stay with us two of the three nights before he had to return to work.

Melissa was able to drive up to Dell Children's Friday in our vehicle with Addie's carseat in it to pick us up. Mom stayed a few extra nights after we got home. I was able to get some laundry done, and closets rearranged in prepartion for school resuming soon.

Addie has been a little fussy on and off and is still pretty sleepy. I don't know how much of this is related to her ordeal last week or just her age or what. I'm looking foward to her having more wakeful aware times.

We have a busy next few weeks planned. Dalton and Chase are here for a vist for a few days, then Jared is coming at the end of the week. Melissa is swapping Jared out for Raychel this weekend and Raychel will be spending all of next week. Hoping Raychel will come with Addie and I to her neuro appointment.

The week after Raychel leaves is blissfully unscheduled (as of now) and then we leave for Duke for Addie's stem cells on August 13th.

Home for another week and then school starts back August 23rd. CRAZY!!

Addie's Shunt Revision

We're hanging out in her room now. Everything went well during her surgery. Dr. George re-directed the proximal end of her shunt so it's pointing into her ventricles the way he had originally planned on it pointing, and replaced her valve with a fancy schmancy programmable one. She went from a setting of 40 on her fixed shunt to 110 on her programmable shunt. Translation - from very little resistence for the drain to medium resistence for the drain which will slow down the flow of CSF out of her ventricles. She had an issue with overdrainage - too much fluid was draining, too quickly and was causing her brain to collapse in on itself. This collapse of tissue caused fluid to build up between the cortex of her brain and the dura space. This fluid pocket is called a hydroma. To fix this, the neurosurgeon also created a new burr hole and drained off some of the fluid from her subdural hydroma and inserted a catheter to drain more over the course of her stay here.

We were paged within an hour and fifteen minutes of her going back to meet with George in the consult room so he could let us know how it went. Then about 10 mins later we were paged back to recovery. They let us both go back which was nice. She was more heavily sedated for her surgery than her MRI so we were not met with a screaming, starving baby like last week. She was still pretty out of it. I tried nursing once but she wasn't wanting to latch on. The external drain was capped, causing some confusion as to whether or not they were going to do the external drain or just leave it capped and wait and see what the MRI showed. It wasn't until George made rounds that he hooked the cath up to the external drain. Kind of eerie knowing that there's an open hole in her head and I can see the fluid pooling in the little reservoir. Very similar to what's happening inside her head as well. Thankfully because this drain is connected to the subdural space where the hydroma is, moving her isn't as concerning as if it was a true EDV draining the fluid off her ventricles. Basically because she has her shunt still in place regulating the internal pressure. The external drain is just removing the fluid that has collected between the cortex and dura and there's only a finite amount of fluid to drain off.

She's doing great so far, as a patient, though I imagine the meds are helping with a lot of that. The true challenge is going to be when she wants to be held and nursed and comforted more by me. We'll have to clamp off the drain to move her and then re-level the pressure setting with her ear line everytime we hold her. Going to try to leave her laying in her bed as much as we can. I'm pumping so we can bottle feed her the breast milk. She hasn't really been interested in eating yet. Hopefully soon.

For now, Adam and I are trying to enjoy the quiet time together while we have it. So thankful we're on the other side of the surgery and she's doing well with her recovery. Praying that she continues to rock it out!