Day 3

11:29 pm - they gave him the transfusion and that seems to have his oxygen levels on a slow increase upward. Other vital signs are okay, although his blood pressure increased slightly but they aren't that concerned as it could be due to the extra volume. His heart rate has also slowly decreased down to the 180 -190 range, the lowest it has been post surgery. Hopefully he is settling in for a quiet night. Just a few hours can make a big difference. 3 hours ago the doctors are all conferencing about what to do because nothing seems to be making sense. Now they have left the hospital and Johnny appears somewhat stable. Praying for a boring night. I'll update again in the morning, going to try and get some sleep.

10:47 pm - ups and downs continue in the ICU. The last hour or so Johnny's oxygen levels have come back up to at least more tolerable levels in the high 50% range....the doctors can't make any real correlation with what happened to what they were doing but at any rate they are a little more comfortable with his situation. Johnny certainly seems to have a flair for the dramatic. They delayed the transfusion to see what might happen and here comes Johnny with higher levels on his own, but the thought is to start the transfusion anyway to try and get him a little higher through the night and then work on the issue again in the morning. The good news - his surgeon and cardiologist have been here all day and into the evening and after this latest turn around they are confident enough about things that they are going home. I think some people out there were praying for him again these past couple of hours.....

9:05 pm - For the last couple of hours, Johnny's oxygen saturation levels have dropped off and remained too low creating some new concerns. Like last night with his blood pressure, the doctors are trying some different things and he doesn't seem to be responding well. This is the new and immediate serious problem. They are going to try and give him a transfusion into his blood stream to improve his oxygen levels. Just like last night the doctors are all still here, trying things without seeing the results they want, at least not yet. Pray for his oxygen saturation levels to increase to better levels without any drastic changes to his blood pressure and heart rate. Looks like we could be in for another long night with our little guy. Things were looking a little better, but now I'm sorry to report they have turned downward again. They have increased his vent air pressure to about as maximum a flow rate as they can. Johnny may need to just battle through this. I'll update again later, thanks for your thoughts and prayers, looks like Johnny continues to need all the help from above he can get.

6:15 pm - Blood pressure has remained stable now for about 8 hours....this is encouraging. The hope is he is stabilizing and can remain this way for a long period of time. A good outcome for him in the next several hours would be to make it through the night and into the morning with his BP stable and not needing a lot of medication adjustments. He continues to have good fluid output. HR remains high. They are shifting some more focus to his lungs with more frequent chest x-rays to make sure he has enough air pressure from his vent to keep his lungs inflating well. He continues to have some fluid build-up in his chest that is stressing his lungs.

2:00 pm - another brief update, the last few hours Johnny's BP has remained fairly stable so we are thankful for that. He is discharging a lot of fluid which is also positive. His HR remains fairly high near 200 bpm. They will try and reduce some of his medications through the afternoon to see if he can maintain stable BP without such high dosages. We are somewhat encouraged that things are relatively quiet for him compared to yesterday afternoon. The visit with Jules went well, I'll report more on that later.

9:50 am - just a brief update, about the same story as before, primary concerns are his BP and heart rate, they are adjusting his meds to try and get him stable, right now his BP is better. It goes up, then it goes down. They adjust as needed and in the last couple of hours he seems to be responding to the different medications. The doctors will be watching him closely today. He is a little more alert and wiggles now and then, which is beneficial to him to maintain BP but at the same time it's hard to see him move and wonder if he is moving because he feels pain or if his muscles are just moving on their own like babies do.

We are bringing Juliana in for a very brief visit. It's important that she sees where he is to have a picture of him in her mind. She has been asking and talking about him. This is a delicate issue for us; Johnny doesn't look real good right now so we will talk her through some things before we bring her in. The specialists we have talked to about this have reassured us that if we do this right, she will be okay. It's important that we hold it together when we have her in here. Pray for us if you are able about this, I'll report back how it goes. We have been working with Juliana the past week to 10 days to prepare her for Johnny's surgery, so far things are going okay. She is so precious to us, we just want to protect her little spirit but at the same time involve her as we need to so she feels like a part of our family and this difficult time we are going through. Trying to balance caring for these two kids and the significantly different places they are at right now remains one of the most difficult challenges of this.

6:20 am - Johnathan made it through the night but he developed some other concerns after about 4 am. His blood pressure started to elevate and his heart rate climbed back up over 200 again. This was a very different problem compared to the earlier episode when his BP was too low and his docs couldn't find a med to increase it. His temp increased again, and a chest x-ray revealed that he has some compromised lobes on each lung that aren't functioning. They adjusted his ventilator settings to try and inflate his lungs better with each breath. The doctors will start to round soon and will try and adjust meds, and will try and figure out how to get Johnny to respond to the new set of problems of high BP and drainage from his chest cavity. He made it through the close call of last night, now it looks like he's got some other challenges facing him early today. I'll update more when the doctors figure out a plan. Thanks for your thoughts and prayers for him.

1:05 am - Johnny may be slowly emerging from his rough stretch. Too soon to say he has turned the corner but things are a little better for him. At 12:51 his heart rate finally dropped below 200 bpm for the first time in a very long time. His BP remains acceptable with some help from his meds. The Lasix did the job for him and he had some fairly good output. His oxygen levels have dropped so they are going to give him a transfusion of blood volume to try and improve things. His cardiologist just went home. It's a good sign when your main doc feels good enough about things to go home and get some sleep. I'm also going to try and crash for a few hours. Through the rest of the night, no news is good news. I'll update again in the morning.