Sunday, February 10, 2013

The RSV Virus

Jaron and I switched spots for the weekend and for me it was so needed. Zoey kept asking if Michael was going to be ok and she wants to see him so much. It's hard explaining why she can't see him other than because he's sick and she'll get sick or she'll get him more sick. I came back today to a whole new baby. He was all over the place! He is a ball of energy. When I left Friday night he had still been sleeping all day and night but I guess he just needed a good ole' dose of dad. The nurses got a play mat for him to crawl around on and he loved every minute. We keep hearing how cute he is and how happy he is and it reminds me of how lucky he is to have this energy. A lot of cardiac patients never will. Most kids that I've read about with Shone's Complex have troubles playing because of how winded they get. One story that I've been following had me in tears because after her 4th surgery this 6 year old girl climbed up a ladder for the first time to go down a slide at a playground. Amazing.

Michael hadn't seen Jaron for about 5 days so when Jaron came in Friday night Michael was smiling from ear to ear and a little in disbelief. At first he'd just woken up when he'd heard Jarons voice. He looked up at him and layed back down. It must've taken a moment for him to understand that he actually did just see his daddy because he shot right back up and had a huge grin on his face as he started reaching for Jaron. They had fun but our weekend was cut short by a blow out poopie. Michael covered Jaron so we needed to switch back just a little while ago so Jaron could shower. The antibiotics are definitely in full effect and fighting hard against these viruses. The nurses are supporting him through and cheering him on every day.

His lungs are clearing up slowly and his oxygen was almost completely weaned. On just room air alone his SATS are still only catching between 84-88. We need them in the 90's so they are going to bring it up again a little to see if they can get what he needs.

This kid is a crack up. He got two new blankets that had been donated and he's loving them.They are super comfy and he's finally snuggled up asleep in them. Thank you to those that donate what you can. You are wonderful and will be truly blessed in return.

Thursday, February 7, 2013

We're Back!

Sunday night Michael got pretty sick and because of respiratory purposes we called the paramedics and took him by ambulance to Children's in Aurora. He was crashing pretty fast because he wasn't getting the oxygen he needed. Tuesday we got positive results for RSV and CoronaVirus. We're in the CICU as a precaution. He's crashed a few times since getting here which is per the Doctor "Classic RSV" - It's like a roller coaster ride.. He's doing better! - nope- He's doing better! - nope - He's doing better! and that's where we are right now. He's doing better! We've gotten him some toys to play with and he was eating a little better yesterday but crashed again last night. They had to raise his oxygen flow to 8 liters last night and are also doing nebulizer treatments every two hours as well as a suction/sinus rinse. Because of the high air flow he's unable to eat or drink (to prevent asphyxiation). He hasn't gotten a bottle or food since just after 5pm last night. They were able to bring his air flow down to 7 liters this morning and he seems to be handling it really well. He's sleeping a little more sound in between treatments which is showing how much they are helping.

I haven't really had time to update the blog so that is kind of a short update. I've been able to get some pictures so I thought I'd at least jump on for a moment to post them for you :)

He kept pulling of the leads to his monitor so they stuck them to his back instead

Mikes toy from his nurse Leah - He used his IV hand as a hammer and loves it!

He's not really enjoying his crib but this was the first time he was ok playing in it

His IV Hammer

Not the best pic other than being a funny face - I wanted to point out how much he is pulling in while breathing. On the left you can see his ribs. The point above his belly button is a scar from one of his drainage tubes after surgery - possible herniation.

PS It is also CHD awareness week starting today. Just thought I'd spread the word and some info. There are so many babies, children and even grown adults dealing with CHD. 1 in every 100 babies is born with a heart defect. Michael's defect is known as Shone's Complex
Our current nurse has two patients at the moment - Michael (10 month old) and a man in the room next to us that looks just over 30. CHD is all around us and the symptoms may slow for a while but for so many it never goes away. I encourage you to make an effort this week to pay it forward from one healthy heart to another. Fill your heart with love so that others may see that there is still plenty to go around <3