Today the kids and I woke up and headed to see Maddy at the hospital with the grandparents. It is Friday so she's two days post surgery. She was moved to a private room last night around 1 a.m. so we were all able to go in and see her now instead of splitting into two groups of 3 to visit. She really enjoyed seeing everyone and we all enjoyed playing some games and toys that Emma got for her birthday last night and the kids immediately snuggled together and played on the iPads.
We asked the nurse on her floor if Maddy was allowed to go down to the 3rd floor play room with her siblings and they told us that she could go once the doctor came in to see her. Maddy was really looking forward to the freedom that this new room and most IV's gone would bring her. Yesterday they had told us they would remove her cap and her drain today and that this is a process they didn't normally have a lot of people present for because it wasn't really fun to watch. We knew it was coming but were not aware at the time that this doctor we were waiting on to see her was in fact this visit. Nathan had gone to shower and grab some breakfast and the PA for the neurosurgeon came in and said it was time to give Maddy more freedom so everyone left the room except me and Nathan's dad. They had mentioned giving her "happy juice" yesterday to help but I don't know where the ball got dropped, but there was most definitely NOT any "happy juice" given. She started out well with them just removing the bandage. She was very excited about that and her and I were entertained by the iPad. But then the part came where they tucked in a stitch to finalize the process. That's when it got blurry. Maddy was panicking so they asked me to hold her against my chest tightly to restrain her so they could get in the right spot to easily do this. Well though my daughter is only 38 pounds, she is a fighter like no other so it took all my strength and Nathan's dad behind me to keep her down. Her head was against my face, my arms embracing her and keeping her arms down and her mouth was right by my ear as she was yelling "stop it", "I'm done" and "I hate you" all through the process. It was so sad! The PA was struggling to get the stitch finished because Maddy was moving so much and then the neurosurgeon came in, an arrival of a new person caused her one moment's pause and that was enough for the PA to finalize everything and we were done. In the midst of that Nathan's was trying to call to ask for the key to come up - all pediatric floors require security clearance and a badge to even make the elevator work. He came in just as it all finished up and I looked up and saw for the first time the incision site. I think if I would have seen it in a normal walk-in-the-room-and-see-for-the-first-time, I would have thrown up. The neurosurgeon even asked how I was doing and said that parents often feel nauseous after seeing it. We had been under the impression that the incision would be small and just around her ear but we had no idea it would be the typical large hook above the ear. Maddy had the left side of her head from around the temple down shaved and there was the large hook. I was shocked! I was not prepare for it to look so terrifying. From Maddy's hospital stay in August, much of this stay has been similar. She's aware of IV's, she's aware of a bandage around her head. For most of this trip so far I have thought that not much has changed for her and then I saw the incision and realized that changes everything. She was livid and yelling so everyone left and then we sat there with her and Nathan's dad and try to calm her as we were processing as well. Nathan's dad took a picture of the incision and took it downstairs to my folks and the kids so they could see it before they see her. I'm glad they did because they had some of the same shock we did. Emma even made a face when she saw Maddy the first time but Nathan's dad was able to stop her and talk with her about it and Emma didn't point it out. Maddy still had no idea what was on the side of her head. I know you may think that I should have expected this since it was in fact brain surgery but when you see this type of incision on a 6 year old, it changes things. In fact, I am avoiding posting direct pictures of it to avoid any discomfort for my viewers.
My folks and I grabbed lunch and spent the afternoon snuggling and spending time with Madeline while Nathan and his dad took care of the kids. She began to finally start smiling and laughing again and I began to see the anxiety start to fade away. It was a great afternoon! I took a nap and she put her hand on my face and we enjoyed being together.
The epilepsy doctor came in and said that we could do follow up at home in 3 months and 6 months and then we'd evaluate meds but for right now we'd stay where we are to avoid changing too much. She gets her stitches out in 10-14 days. My parents headed back to RMH to do dinner with the kids and Nathan and his dad came to the hospital. Nathan's dad sat with Maddy while she ate and he and I sat down and ate a meal together for the first time since Tuesday. When we got done we spent time with Maddy just laughing with her and praising her for all she's done this week. As I was leaving to go back to the RMH the pharmacist came in with all the meds Maddy would need for our return trip because she said she had got the word that we were being discharged. We hope that tomorrow we will be discharged and will be able to head home.
Here's prayer requests for tomorrow:
1. That we can be discharged tomorrow!
2. Safe travels as we return.
3. Maddy is seizure free so far. Pray that continues!
4. Adjustment for us as we return to our normal lives with our lives so very changed. We are grateful for the community we have and the many already preparing to bring us food as we settle home.
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