The activation of Elin's cochlear implant went wonderfully today. She responded very well to the new and exciting world of sounds the CI will provide for her. We were sent home with a HUGE backpack and large box full of stuff to support this new device so Myles and I have some homework!
Elin was exhausted and in bed by 6pm tonight- this listening stuff is tough.
We recorded quite a few short vignettes but these two are our favorites.
We are very thankful that Elin's surgery went well. My night in the hospital, sharing a room with a newborn that woke every 1/2 hour was less than ideal, but hey- it's only sleep right?
In the hospital Elin never touched her mastoid wrap (head dressing). However they kept telling me that if she were to remove it we would have to come back to the ER to have it put back on. So what do you think she did just a few short hours after we got home from the hospital on Thursday? Yup- she took it right off. We freaked out because she was thrashing her head about and we were trying to control her without touching her wound or her ear. It was like wrestling an octopus. My dad drove us to the Seattle Children's ER while Myles held her head still in the carseat and I held her hands. It was a mess. We spent several hours in the ER and thankfully asked what we should do if she were to remove it again. Lord knows we didn't want to trek into Seattle every few hours when she wriggled it off again. The doctor gave us extra dressings and a Velcro headband and said "do your best" and sent us on our way.
If a toddler wants to take something off- it comes off- no bones about it. Elin DID NOT want that thing on her head. We struggled, and fought all night and Myles ended up sleeping on the couch with her, wound exposed but hands contained all night Thursday night. Everything we tried didn't work- we had to hold her away from our own bodies or she would rub the bandage off her head. If we let her hands go she would tear it off- so you can imagine how this became an impossible task. I called our surgeon on Friday morning and told him our dilemma. He told us to take it off and it would be fine. WHAT? He said she wouldn't touch it and if she did she would only do it once, once she realized it hurt. So we trusted his advice and guess what- she left it alone; she was happy and we were happy. Life was good again.
Gross out warning- if you are queasy about blood don't read this part.
When they perform the surgery they cut behind the entire length of the back of the ear and fold it forward to get to the cochlea. Seeing her stitched up ear I had horrible visions of her grabbing her ear and tearing it off. I almost made myself sick thinking about it. At night I had to trust that she would leave her ear alone and not thrash about like she had been before. It was not a stellar week of sleep for any of us.
The weekend came and went and she seemed to be recovering well. Anya had been fighting a cold so we were trying to keep her germs away from Elin. Nope- didn't succeed. On Monday morning Elin had a seizure. She had been acting weird and agitated so I put her back to bed at 8 am. I happened to go in and check on her and she was seizing. I gave her the emergency Midazolam because this seizure (like all her seizures) wasn't stopping. Last time the medicine worked great- this time not so much. She stopped seizing but she wasn't responding to me and she started shaking and wouldn't open her eyes. I waited this out a few minutes to see if she would come too but she was just getting worse. I called 911 and long story short we ended up taking yet another ambulance ride to Seattle Children's ER.
She started to return to normal after the paramedics arrived but seemed agitated still. Back at the hospital she had to have more people poking her and bugging her. She definitely has an adverse reaction to people in scrubs now- it's sad. She spiked a fever while we were in the ER which was probably why she had the seizure. They were worried about infection since she had recently had surgery but all the labs came back negative. She just had a virus.
The hardest part was sitting with her while they inserted an IV in her foot that had just had an IV taken out of it several days before and watching the tears run down her face. She was looking at me and if she could talk she would have been asking me "why, why mom is this happening to me?" I spoke back to her through my tears by saying, "I don't know, I'm so sorry." It was a very difficult moment.
After all the tests were run and we had her fever under control and her heart rate slowed, we were released. My Dad came and picked us up to take us home. This was the Monday following her surgery.
The very next day, we took the girls to the park near our house. Life was starting to feel good again and the sun was out. Myles decided to do a handstand on parallel bars in the play structure. He missed his dismount and REALLY hurt himself. He hobbled over to me, he was bleeding, he said he felt dizzy and then fell flat on his face. Once on the ground, he started convulsing. I fished the phone out of his pocket while I tried to steady his body and called 911- the second time in as many days. He came to, and he had no idea what had happened. I basically had to tackle him to make him sit back down and waved the firetruck into the park. His face was pretty beat up and he was still in a lot of pain but walked home- trying to 'walk it off" I guess. Once home I called my Dad and Mom, they came over and my Dad drove Myles to the Overlake ER. Ironically my Dad use to be an ambulance driver- with all the work he has had driving us back and forth to the ER over the last several weeks he might as well be one again. Myles was sent home with a catheter that remained in for 11 days! He was in a great deal of pain during that time and is still not feeling great.
Ahhhhh- It's almost funny how UNBELIEVABLE this all is.
BUT- Anya turned 5 this Monday and had a wonderful My Little Pony themed birthday party in our newly remodeled. back yard. Myles and my friend Kelly planned a surprise afternoon out for me. She took me to a spa and out to dinner where two of my other friends surprised me when they showed up. AND Elin's CI gets activated on Tuesday.
