This past week has been a busy one.
Unpacking from vacation, work, firefighter training, work on the house, getting all of the landscaping done around the house, school and so on.
The biggest things that have happened this past week were Kate's EEG and MRI.
The EEG was last Tuesday. I was a bit nervous for this test because they needed Kate to fall asleep there, with 27 wires taped to her head. I didn't think there was a very good chance of that happening. But I prayed a lot about it and tried to just be calm. We were told that Kate had to be sleep deprived, so we had to keep her up late the night before and then I had to get up with her at 5am that morning. Going into the appointment, Kate was actually looking forward to it! When the technician came out, Kate was a little nervous and started crying. But once we got her to calm down, she was awesome! She laid still while getting marks drawn on her head and then when they put the sensors on her. Once the tech was done, she turned off the lights and within one minute, Kate fell asleep. I was so relieved! They were able to get the test done, no problem. Kate did a great job!
Then, on Monday, we headed into Boston for Kate's MRI. I will say that this appointment changed my opinion about Children's Boston. Our first visit back in October, I was not very impressed, but this trip was so much better. Everyone was very friendly and helpful. The waiting room was great, with boxes of crayons and coloring pages for the kids, books, a little kids table and chairs, and there was a kid show playing on the TV. Our nurse ( I can't remember her name!) was amazing. We got Kate changed into her johnny, aka her "hospital dress". She had "lotion bubbles" on her arm and hand. These "bubbles" were numbing cream to help numb the area for the IV. They did one on her hand too, in case the IV didn't work in her arm. They even gave Kate a portable DVD player so that could watch a show while we waited to get the IV. She did great up until it was time for her IV. That was heartbreaking. I haven't heard such a sad and scared cry come out her. They had to put a ton of tape on it, so that Kate couldn't take it out, and then they even wrapped her whole arm in a towel. I think that was to protect the IV, but also so that Kate would forget about it, since she couldn't see it.
|Kate in the "hostable"|
It took Kate quite a while to settle down from getting the IV. After that, we met the team that would be with Kate and doing the scan. I was actually very impressed that there was a team working on her. I wasn't expecting that. But there were 2 or 3 anesthesiologists, one or two nurses, and then all of the people that actually do the scan. Then, Jake had to leave (they only let one of us take Kate into the MRI room) and I took Kate with the team to the MRI. Holy smokes, those machines are HUGE. Kate looked so tiny in it! She got very upset anytime anyone went near her IV. It took her a little while to finally "fall asleep". They all kept saying that she is tough! She would drift off and then suddenly open her eyes and call out to me. But I stayed with her until she was definitely out. I thought it would be a lot harder seeing her like that (under sedation), but it just looked like she fell asleep. The team reassured me that they would take great care of her, and I knew that they would. The nurse led me out to the waiting room, where Jake was waiting for me.
The scan only lasted about 45 minutes. The nurse came out suddenly and said that Kate was already awake and crying for us. Usually, when they stop the medicine, it takes the kids a little while to wake up from it, but Kate woke up immediately after they stopped it. Jake and I went in to see her and comfort her. Jake took full advantage of her sleepy state and held her and cuddled her the whole time. It was actually pretty hilarious to see her like that. She was so out of it, her eyes half way closed and she kept rocking back and forth, talking to us and trying to eat/drink, but also being so sleepy. She was so cute. We had to stay with her in the recovery room for about a half and hour or so. They needed her to drink a lot of juice so that her blood pressure whet back up a bit. She was a bit spoiled in there, they gave her 2 cans of juice, teddy grahams, goldfish, a new sippy cup and Kate's favorite, a giant sparkly star balloon!
Kate did a great job. Everyone there kept commenting on how adorable she was and how she was the best patient of the day. We were so proud of her- such a little trooper.
The whole process was a bit more emotionally draining than I was expecting. I knew it was going to be a hard day, but boy was I tired on the car ride home. We left Boston right at rush hour and were stuck in traffic for a while, but Kate fell back asleep right away and slept until we were almost home.
The GREAT news is:
Jake got a call from the doctor yesterday and they said that Kate's EEG came back normal and that the MRI showed NO tumors or abnormalities of any kind! Everything looked great. They did see that her sinuses were imflammed, but that's something we talk to our PCP about, it has nothing to do with the vomiting.
What amazing news!
So, we still don't have any answers, but now we know that her brain is nice and healthy! The next steps for Kate:
We have a follow-up with her neurologist next Thursday. And the next time she has an episode, we need to take her to the ER to get a lot of blood work done. And then we will go from there. It has been almost 2 months since Kate's last episode, so we are hoping that maybe she is growing out of it, or they will just happen infrequently.
So, it seems that this whole thing is winding down, which we are all very grateful for. We have all been through a lot, and we are looking forward to not having so many appointments. I can tell that it is having an affect of Lily and Jonah too. They have been playing "doctor" all the time and they always say "Oh, you have to go to the hospital now..." and things like that. It will be nice for things to settle down for a while.
I am so thankful for everyones prayers and that we have such a sweet and HEALTHY little girl!