What a week

Tuesday of this week started with Amelia's second hip surgery and recast. We got to the hospital bright and early and were home before lunch. Everything went really well. Her hip is exactly how it should be and her cast will be coming off Nov 20!!! 

Wednesday night I noticed a new discharge on the incision site is Amelia's shunt. Thursday morning I called the NS office and they sent us to the ER. A shunt series (x-Rays) and CT scan were needed. Despite throwing a fit we got the shunt series. The CT is another story. After 3 tries (one normal, one after feeding and one when she was sleeping) and her screaming we decided to sedate her. Well apparently the IV wasn't placed correctly because the medication didn't work right away. After 2 doses and lots of tears we finally got the scan and headed to our room. Amelia was having emergency brain surgery in the morning. 

When we got in the room she had a shunt tap done. This is where a needle is stuck in her head to draw CSF to make sure it's not infected. This little girl spazzed during a CT but was talking and calm during the tap. Those drugs finally kicked in. 

With the leaking it was just a matter of time before the shunt and brain became infected. So Dr Naftel wanted to remove the shunt on the left and get it put in on the right. 

Thankfully there was no infection in the CSF. To be sure another sample was taken during the surgery and sent to be tested. The shunt on the left was removed and another one placed on the right. Dr Naftel was completely happy with the outcome. He said it made a huge different and don't be surprised if her head was sunken in eventually. By the time we got to see her head was already sunken in. What a difference putting the shunt on the right side made. 

We had some issues with her staying awake and eating and I was not sure if she was just getting used to the new pressure or if maybe there was over draining. When the NS team came through they felt confident that it was okay and she's come around. An hour later we had dinner and that's all it took. Little princess perked up and ate like a champ. I guess a bottle wasn't going to do for her. 

If all continues well through the night she will get to go home tomorrow. I feel so bad because my little baby is bald but she will have hair yet again. What sucks is that I have to now see all her scars, I can clearly see the bone and where it ends and I'm reminded of all she's been through. But this too will pass. 

Always something :(

I don't know why I expect anything to be uneventful and to go our way. I always end in disappointment and hurt. 

Last week monday I called the neurosurgeons office because Amelia's eyes weren't sitting right with me. He right eye was crossing more, her head was getting larger. I called and of course because she doesn't throw up I was ignored. Finally got a call Wednesday to come in tomorrow for a mri and see her NS. Well in my world that meant Thursday. 3 times in the voicemail she says tomorrow. Well after she called me a liar when I showed up Thursday, I find out her tomorrow was next Tuesday. 

So this morning after the daunting task of washing her head I notice a huge "goober" (what her NS called it lol). Of course it looks infected and all I'm thinking is admission to the hospital, surgery to remove shunt and external drain. We went to therapy as normal and then to the mri (which she moved too much to get a good read). Then up to the NS office. 

He wanted to removed the goober. If he saw shunt immediate surgery was needed. If he didn't see shunt then we would do wound care at home. Thank the good Lord that shunt was not seen. The cause could only be speculated as pressure from the helmet. 

The mri showed the left side as great. The right side, not so much. It's not bad enough to have surgery now but he wants to move the shunt from the top left to the bottom right. The shunt needs to be on the right because that's the side that needs the help removed excess CSF. The reason it wasn't place there before is because of the no bone issue, which we have again. So I don't know if this means a temporary plate will be put in since she will be having a new shunt or what. 

I don't know if it's nerves or what but I'm a wreck. I don't like feeling this way. I hate the roller coasters of emotion. I'm so thankful that she is home with me now. I hate that for a few weeks she won't be in a helmet and have anything protecting her head. I hate more than anything that she has to go through all this. She had a rough day today but for the most part she had her cute smile. That and she was all about leaning in and giving me kisses, telling me it's all good.