Are we there yet!

What a whirlwind!
Nikolas was flown home, not by helicopter but by a small jet. A company called Pedi-Flite and two Leboneur paramedics brought Nikolas back to Kansas. Carsen and I were able to ride too!
The flight was only an hour and there was a little gps like screen I could watch to see how much further we had and it showed how fast we were going!

We got up to 432 mph! That's a speedy delivery!

We arrived at the Kansas City Downtown airport, then hopped on an ambulance for the rest of the ride to the Children's hospital. It was pretty neat to see how they transport patients both by air and in the ambulance!

Nick did great with the flight too, he only slightly dropped his sats on take-off and landing but the paramedics were easily able to adjust his oxygen settings to get him back up.

We arrived on the 17th which was a Friday, and of course, they don't do much over the weekend. But we knew that would happen and we're really just thankful to be home.

We met with ENT and they came up with a plan. They would do a broncoscopy and laryngoscopy in the OR and attempt extubation then. And start steroids on Saturday to reduce swelling.

The plan worked! By Monday he was extubated! When I got to see him again he was on a nasal cannula but he seemed very uncomfortable. The ENT showed us the pictures of his throat....

It was so red and he had almost blister like protrusions all the way down his airway :o( When he cried it sounded so sad and miserable. The next 72 hours are the most critical and they kept giving him steroids and high pressure oxygen to help keep his airway open. They even tried an oxygen/helium mixture but that didn't go over too well.

That first night was rough, we were all just hoping and praying that he would not be reintubated.

Joe stayed with Nikolas in the PICU while at Children's because I am still breastfeeding Carsen and he  is not allowed to stay overnight.

When I came back in the morning, miraculously, he was completely off the oxygen! They weren't even using blow by! (That is where they just put the oxygen tubing close to but not on his face).

Nikolas had been on strong sedatives (Fentanyl and Versed) for about 2 weeks while he was intubated. It would take weaning him off of the drugs for some period to slowly allow the drugs to leave his system. Otherwise, it could cause a lot of adverse affects, including seizures. So they switched him to Methadone and Valium. I questioned the Methadone but the doctors seemed sure it was what he needed to wean off the Fentanyl. That drug stinks, Nicky has had a hard time with it. Including his left cheek turning bright pink and very warm 15 minutes after he gets it. We will be weaning him off for about 3 or more weeks.

Nikolas continued to do better and was moved to the floor on the 23rd. But after being on steroids and all these other drugs for so long we were having a very hard time keeping Nikolas comfortable and he was NOT able to sleep at all. Literally, I think he was awake for almost 3 days straight. It was excruciating and frustrating because not only was he awake, he was in withdrawal pain and constantly cried. And it was the saddest thing, he would cry but barely any sound would come out, it broke my heart!

I don't know why no one thought of it sooner but the steroids were probably causing him to be unable to sleep, but it took a few days before we figured it out. So we stopped the steroids. He was getting pretty high doses of Valium and even Ativan, which usually knocks him out, but it wasn't doing anything until the steroids were out of his system.

I think those few days he was so uncomfortable and wasn't sleeping were some of the worst we've ever had. Joe was at work for most of the day and I had Carsen at the hospital with me so I was trying to manage two upset children in a cramped space with little help. Carsen hates the hospital. He may only be 6 months old but he hates being in the same hospital room all day long with little outside interaction.

So do I.

Finally Nikolas settled down, the steroids were finally out of his system and he was able to sleep. We got to go home on the 26th. Nikolas was in the hospital for 23 days (20 in the ICU) and was away from home for 28 days. We were all very excited to be in the same car together!

Well I have been trying to get this written and posted for quite awhile but things have been hectic since finally being able to go home. I have a lot more to write about but this post is long enough....I guess I'll start another one :o)

This picture is at St. Jude when he was still intubated and having a 24 hour EEG done. 

He wasn't awake for very long but gave still gave us a great smile!