Kaleb Prinz

BEGINNING OF OCTOBER

It has been a couple of weeks since our last post. When I thought about setting up this blog I figured it would be easy to post a couple of entries each day. Boy was I wrong! I never knew how much time it took to pump every 3 hours, order a meal, listen to rounds, etc. So here it is on the weekend and I have some time. Actually, we do get some time during the day to write, but I’ll play a game on my Ipad or Jenifer will search the internet and read about what is going on. It’s healthy, and our only avenue towards a little bit of a life outside the hospital. Even though this is our new life, it’s still nice to take some time for yourself.

Jenifer’s last post was so inspiring for so many that it is hard for me to even come close. I’m glad that she got to share her experience through this with everyone. Hopefully she’ll find time to write more because she touched so many people with her last post.

This will be another post to catch everyone up on what has happened to us in the last week or so.

We’re going to start on Thursday the 6^th.

Kaleb’s PD Cath was removed finally removed. It was minor surgery but always a risk for arrhythmia due to his heterotaxy. All went well and he his healing nicely. There are still some internal stitches but looking good! The Cath was put in the day after his stents where put in. Since it had been so long since he’d needed it, it probably wouldn’t have worked anyway and just needed to come out.

At 4pm (we were scheduled for 3 pm but Rylynn got her new heart and all was a buzz in the ICU. Our prayers and well wishes go out to Rylynn and her family. We’re so happy for you guys!!!!) we met with the team on the 8^th floor, the step down floor. Yes, you heard me, we are moving out of the ICU! They have been talking about it for weeks now, but because we had the PD Cath we had to stay in the ICU. The meeting was great, but we had to revisit some of the earlier events. It was not really something we wanted to talk about. Personally I could do with never hearing the word “withdrawal” ever again…. Other than that everything was fine and we were scheduled to move out of the ICU on Monday. Another side note about the meeting. Two terms that were used officially, one could say, were the following; miracle baby and we’re in uncharted territory here. Kaleb is a fighter and beating the odds! After that meeting I went home to sleep and then the next morning…………

An Aussi by the name of Alan said the following phrase to my wife, “we have a safe at home program” and my wife began to cry. Of course, Alan thought he said something wrong and didn’t realize he was the first to break the news to us- the news that we would go home before our first surgery!!! Dr. Nugent told Jenifer that he and Dr. Forbess had discussed Kaleb’s future surgeries and decided to let him grow and do the first surgery when he is around 6 months old. There were many pieces to the puzzle that had to fall in place in order for this to happen. In short, Kaleb needs to be as big as possible for the first surgery, because it’s really involved. Thankfully he is doing so well with feeding that we are able to achieve growth. By the way, he is 6lbs 15oz as of today. The surgery is really a moving target and all has to do with his oxygen levels. Right now they are high, but as he grows they will drop. If 6 months pass and he is still within acceptable oxygen levels, they’ll push the surgery back. Bigger is better. We were also told that it looks possible to repair the ventricles and provide a pumping chamber to the lungs. I’ll try to explain this later in a post that describes Kaleb’s heart condition. Great news and if possible will allow for a better life. Again, this is way down the road and we need to focus on the first surgery because it’s pretty important and there is a lot that Dr. Forbess will have to do. It was all great news and we had a wonderful weekend in the ICU, our last for now…..

Monday came and I took time off from work to experience the move up to the 8^th floor. However, we did not make it. They were full and they do not move patients after 5pm. Needless to say it was very frustrating and we were all packed and ready to go. So, at 5pm we took out what we needed for the night, and waited till the next day. I will admit, I had a deadline on Tuesday with work and was unable to be there on Tuesday and did not experience the move. Being a dad can be tough. Having to balance family and work! I’m sure all new dads go through this and now I can understand. On Tuesday morning Jenifer and the team moved the boy and 40+ frogs to the 8^th floor. We’re in room C8272 with a wonderful view of the sky and Parkland hospital. Better than the garage view in the ICU. Not important, but trying to paint a picture.

On the first night on the 8^th floor, I was able to eat in the room while holding my son. Words can not describe that moment. We’re just one step closer to being home. Which we have been told could be in 2 to 4 weeks. This adds a little perspective and makes me a little anxious. We need to clean the house, carpet, ducts, verify car seat is installed correctly, etc. We never thought we’d be going home until the first of the year, so we put some of these items on the back burner. Eekkk… This first night was tough (scary) for Jenifer. Sometimes we guys just don’t read the signals very clearly and I should have spent the first night with her. I did the second night, though… J Needless to say it has been a little more of an adjustment than we thought. Because Kaleb is unique, there are more visitors (residents, nurses, fellows) that swing by. (We have been joking that there is more activity in the step down floor than we did in the ICU.) The room is also smaller, and trying to get our stuff organized has been a little tricky. Frogs have fit nicely though…..

It might come across that we are a little frustrated but we are not! It is so much better than being in the ICU. We just had a little adjustment period. Now everything is going well, and we’re ready to go home. Kim, one of the NPs from the ICU runs the “safe at home program”. She came by on Wednesday and gave us our binder, scale, stethoscope, pulse and oxygen reader, and list of requirements we have to pass in order to go home. This program was one of the reasons we chose Children’s and it appears to be better than we thought. I don’t think they’ll let us leave until we know how to do everything and we always have a nurse on call 24/7! Kinda scary that we have to listen through a stethoscope and know how to put in an NG tube (feeding tube through nose that goes into stomach) and that it is correctly placed. We’re on it and we’ll have it down in no time. Actually we know how to do everything except put in the NG tube. J

We have our struggles but are doing great and settling into a routine. The goal will be to leave on PO (per oral) feeds. However, Kaleb has all the signs of reflux and we have switched the formula we use for fortifying the breast milk and have given him some reflux medicine. I feel for my wife. You just want to say…. “what’s next”? We give him 2 shots everyday, 7 medicines, living in the ICU, visitors 2-3 times a day, machines peeping all day (got that taken care of last night!), wife has to pump every 3 hours, and now we have a baby with reflux (constantly upset and always crying)….. neeeext…. J

Part of the course we’re on and we’ll adjust like we’ve been doing. But this last week has been a little tough! But we’ll take it because we’re just one step closer to being home, which should make things a whole lot easier! So I say, bring it on…… Well, my wife can handle it better than me… J

That’s our story up to this point. See some pictures of the boy below.

Karl

Hangin out with cousin Avery and Aunt Jacque