Life Flighted

So Carter got RSV and a bacterial pneumonia, which landed him in the hospital Monday night.  He had a temp of 104 and was breathing really fast and hard- which is called retracting- so we took him to Primarys at Riverton.  They admitted him and upon visiting him the next day, decided he was again breathing too fast.  They gave him as much oxygen as they could there, and then decided to have him life flighted to the Primary Children's in Salt Lake.  This was the first time we had taken him to Riverton instead, and I guess I learned my lesson ha ha.  I was able to ride with him on the helicopter which was scary but also cool.  It only took 7 minutes to get there and he was taken to the ICU.  They started him on the bi pap and it took until Friday evening to wean him to the cpap.  He has been treated with antibiotics, fluids and oxygen to help him recover.  He is now being transferred upstairs to the floor, which means improvement.  He won't be home for Christmas unfortunately, but we know he is being taken good care of.  And he is improving which is the best outcome. 

We haven't been in the hospital for anything major in a year, so I wasn't too panicked.  I am grateful he didn't need to be intubated and has improved.  It is harder now with my daughter and having to switch between being with kids.  We've had great family and neighbors helping us out and I know many have been praying for him.  They have been felt.  Not only are they still trying to wean him to room air during the day, but we are also still waiting on his bi pap equipment and ventilator.  Since he has been so sick, they won't let us go home until we have it for him at night.  So we wait.  I had a pulmonologist came talk to me about Carter, and she kind of freaked me out.  She told me that kids that need a bi pap at night also end up needing it during the day as well.  So then the decision comes whether he is ok wearing the mask all the time, or if a trache would be better.  They want him to follow up in their bi pap clinic to make sure everything is going well.  Also, while he was at the hospital, they switched out his G Tube button for a smaller size.  My husband has been sick during this time, and also, Sierra started crawling.  So it has been both bittersweet and busy around here.

I am hopeful for Carter coming home later this week, and that he'll be ready for preschool and Primary in January and will have a good healthy year.  I hope as he gets older he will also get stronger.  Merry Christmas to everyone and a Happy New Year!!

South Davis & Carter's Birthday!

Carter went to South Davis Community Hospital in Bountiful for a cpap trial run.  They told me it would take up to a week to get the settings right.  We took him in on Friday the 30th and dropped him off with some clothes, toys and his wheelchair and medicines.  South Davis is different than Primary Children's in that the patient share a room unless very sick.  Carter's room was right across from the nurse station so they could keep a better eye on him.  The first night they conducted their own sleep study with blow by oxygen to see how he did.  The nurses checked in on him repeatedly and didn't physically notice any de-sats (this is when the oxygen level goes below 90) or obstructions.  When the respiratory therapist read the study, it did show desats and obstructions at 20 per hour.  So the next night they put a nose cannula on Carter at 2 liters and did another sleep study.  He did better, so then the third night they started the bi-pap mask.  It is similar to the picture shown above.  Over the next several nights they adjusted the settings and got Carter used to wearing the mask when sleeping.  Most nights he slept pretty good until 6 or 7, and it took them 3 tries each night to get the mask on to where he was ok and sleeping.

We were anxious to go home as it was Carter's birthday on Saturday and he starts preschool the next week.  They let us go home on Friday, after a week there, with the understanding that the bi pap Trilogy and concentrator would be delivered that day.  Some confusion followed when the company called me and said they wouldn't have it in for a few weeks, if insurance approved it at all.  Hopefully they will, because now we have a week's worth of studies to show he really needs it.  The interesting things I learned about sleep apnea was that it's a 50/50 chance they will either grow out of it or have it forever.  Anyone can have it, even babies.  When your oxygen level decreases or you have an obstruction, your heart rate increases to make up for it and your body is working harder to breathe.  Carter hasn't been sleeping well for a long time now, and his little body has been working extra hard.  This might explain his sleepiness during the day as well as waking up multiple times and early.  It disrupts his sleep patterns and he doesn't get a good, deep sleep.  I hope this helps when we get the equipment, and that he tolerates it fine.  The last few nights at South Davis it just took them one try and he went to sleep.  They were really impressed how well he did with the mask.  Even if he woke up to play for a little bit, he wouldn't try taking it off.

South Davis was kind of a neat opportunity for us to visit the facility and see how nice the staff and nurses were to Carter.  Some kiddos are there long term because they don't have family or their health issues are so extreme.  I was only able to visit 4-6 hours a day because Sierra was with me and was too feisty and there just wasn't a lot to do.  The whole nursing staff told me everyday how much they loved having him, how sweet and cute he was, and how much he laughed.  I was glad to hear he was happy there and well taken care of.  It's nice to know there is a place Carter can go if we don't want him to come home yet or don't want him going up to Primary's.  I was very impressed with South Davis, and I'm a close friend with the director Dr. Murphy.

Carter turned 3 on Saturday!  We decided to throw a pirate party because he was a pirate for Halloween and we still had some cute supplies leftover.  I bought Carter this shirt from Gymboree because it had a cute pirate ship, island and monkey on it.  Perfect.  We had a great turnout that we were quickly running out of room and people spread down the hall and to the kitchen and dining room.  The cake was adorable and so yummy.  Carter was spoiled with lots of toys and cute clothes.  I was especially surprised and grateful for friends that came, one in particular was Melanie and Whitney.  They live close by and Whitney also has 1p36.  It was a treat to have them come and have my family meet them.  This is a picture with a bunch of kids and it looks like Carter is smiling at Whitney. 

We played pin the flag on the map and the kids got bubbles- I also had party hats or eye patches for those that wanted to wear them.  It was a fun party!