I.Got.To.Hold.Kale!

Family photo!! This one is going in a frame!

Cutie pie :)

Best moment ever :)

Sorry for the delay in updates, the website was down so I couldn't post anything until now.

As you read, Kale had a pretty rough weekend. His day yesterday wasn't much better with his vent settings and oxygen high. He had to have his PICC line reinserted yesterday, it took 3 or 4 tries for them to get it in, poor guy!

The good that came from yesterday was that I got to hold him!!! The nurses saw that Derc and I have been pretty on edge recently and our nurse, Maribeth, recruited some other nurses to help get Kale in a position that I could hold him. They had to wheel up a gurney from the ER so I could lay on it. My body had to be above the vent tubing since it holds some water and if the tubing goes above Kale it could drown him because it would flow right into his lungs. It took 5 people to maneuver the machines and him to get him into position since they have to turn of his vent and bag him until he's in position. It was stressful watching the transfer, but as soon as he laid on my chest it was all worth it! It was a moment I'll remember forever, his body is so light, but he moves as I would expect any baby to. His fingers would grab against my skin and he would tap his fingers on my chest. He just slept there for about an hour and a half. His oxygen levels went all the way down to 60 after spending most of the day at 80. I was grateful the nurses let me do it, now we have to get Derc a turn!

Today Kale had his third brain scan and an echocardiogram. The echocardiogram showed that his PDA was slightly open, and now there is blood going through it. However, the Drs. don't feel that it's contributing to his lung issue since it's a slight opening, so they are choosing not to treat it with medicine at this point. The reason is that they feel the medicine is hard on the body and if the benefit doesn't outweigh the risk they don't want to do it. We still do not have results from the brain scan in.

Today Kale's Dr. discontinued the antibiotic that he was on as his infection tests are coming back negative. He also had his feeds increased to 10 mls every 3 hrs. He is on a low dose TPN drip for now which they will probably discontinue tonight. He got a blood transfusion today and they gave him some doses of Lasix to help dry him out a bit since it looks like he's retaining fluid. He is up to 2 lbs. 3 oz. now! We're hoping he can continue to grow and get bigger and stronger.

The Drs. are trying something new with his lungs since he is moving in the wrong direction in that area. They brought another machine up that hooks up to his vent and it pushes Nitric gas into his lungs. I believe this helps keep his lungs expanded while allowing them to bring his oxygen % down. Today since they started it he was at 90%, and now he's down to mid-60's, so it looks like he is responding to it. However, his SpO2 levels are still kind of all over the place. The Dr. talked to me today about starting Kale on some steroids for his lungs. They are thinking about doing a low dose of a specific type of steroids our body naturally makes (I want to say this is Hydrocortizone). These steroids are a bit less aggressive so aren't as tough on the rest of his body. We'll see if the Dr. introduces those in the next couple of days.

Over the next few days we're really hoping and praying that Kale's lungs improve. His body is doing pretty well otherwise, but his lungs are not moving in the right directions. Kale can definitely use your prayers and positive thoughts. We're really hoping it can turnaround and reduce the stress on his body.

Thanks for checking in and for your prayers, we know we had a lot of them coming our way today with his tests. I'll update later with results of the brain scan!