So, as most of you know, Naomi had an episode a little over a month ago and we decided to take her to the ER so that we could start the process of having her seen by docs here in Brazil. Thankfully, the pastor we work under was able to drive us to the children's hospital and be there with us.
When we arrived at the ER, we were taken directly to the triage area and evaluated by the people there (I never really know who I'm dealing with because they don't introduce themselves... an interesting concept for me, but what do ya do?)and sent to see an ER doc for the initial evaluation. When we arrived in this room, Naomi was in a part of her episodes that have been the most difficult for me... it's about 1/2 hour into the episode and she normally has been sleeping for a couple minutes and when she wakes up she cries for a some time and then falls back asleep... this normally lasts for between an hour or 2, but she is absolutely inconsolable during this part of the episode and this time in the ER shed some light on what might be happening during this period to make her this way. As the doc was evaluating her, he stood her on the floor and the first thing she did was put her hands up in front of her face like she was trying to protect herself and she slowly laid herself down on the floor and got in the fetal position. After this, the doctor asked me to call her, and so standing about 3 feet away, I started calling her name and telling her I was there... the doc stood her up and this time she started walking in circles, crying, with her hands up by her face still. It appeared that her senses were totally shut down... I don't think she could see or hear me and it was probably the worst feeling in the world! It was everything in me not to bawl my eyes out!
Well, from there we sat in the ER for about another 2 hours, spoke to a couple more docs who decided to admit her and then moved up to our room for the night. Because of some craziness with our Brazilian insurance, we ended up being admitted under the Brazilian national health insurance.
Besides the fact that we're definitely still learning Portuguese, there were many other things that made the visit somewhat (ok, a lot) more uncomfortable than past hospitalizations. Here's a few of those things:
-Instead of the ACH suite, we were in a roughly 8'x 10' room with no A/C to be shared with two other patients. The kids all stuffed into tiny baby cribs and the parents left with a chair that could recline more if the room were bigger.
-About an hour before bed the moms left and the dads arrived to spend the night, so I spent the night with two other men and woke up about every fifteen minutes after accidental games of footsies.
-I was only allowed to keep a tiny plastic bag of my own stuff in Naomi's room with us because of infection control purposes.
-Since the rooms were so small, only one adult was allowed in the room at a time, except for the 1 hour visitation period between 2pm and 3pm. Whoever was staying was identified by these hideous smocks that had to be worn at all times. I got yelled at by security because I had it draped over my shoulder, and it had to be worn PROPERLY.
But there were also blessings that accompanied this interesting time in the hospital and they were as follows:
-I got to meet 2 new Brazilian couples who were really cool, and had some good conversations with them, which was encouraging in regards to how well I'm picking up Portuguese.
-We got to pray for one of Naomi's roommates who was going in for brain surgery the day we were discharged... she had been in the hospital for 2 months already and was a sweet little 3 year-old girl.
-We were able to get connected with some other doctors who are knowledgeable about Glutaric Acidemia (the genetic problem they think Naomi has) and have been able to become more knowledgeable also, which has been fabulous.
Well, if you're still there, thanks for hanging in this long. And thank you even more, for walking this crazy journey with us! We wouldn't be able to do it without the amazing support of those who love us!
Tchau, for now.
I love you all so much and this made want to give you such a big hug.
ReplyDeleteYou are one strong family. I'm praying for Naomi and all of you.
Love,
Ana