Day 2

11:55 pm - Not much new to report, heart rate high, BP responds to epinephrine, so at least we have a way to treat his low BP when it occurs. They gave him a dose of Lasix to try and burn off some fluid so we will see what happens and hopefully no negative effect on his BP. Based on notes back to us and calls, a HUGE number of prayers going on for our little guy....thank you for your involvement in this with us. We can't tell you how much it means to us that so many take time to pray and think of us during this time.

10:00 pm - Brief update, making a little positive progress, the epinephrine has kept his blood pressure up but when they reduced the dosage his blood pressure started to come back down. The nurse just told us that she may need to up the dosage again to keep his BP at good levels. It's important that they can reduce the meds as soon as possible and that he will sustain keeping his BP at a good level. Johnny's not there yet. The surgeon came by to take a look at things. His comment was, "we are better than we were an hour ago." Looks like we can delay the "last resort" drug for at least the next few hours. Hopefully we will not need it. Heart rate remains higher than anyone wants but the BP is the important vital sign at this point. Haven't turned the corner yet. Still watching him closely. We spend time with Johnny at the side of his bed, holding his hand or touching his shoulder, praying for him and trying to do what we can do in the way of comforting him.

8:00 pm - Sorry for the delay to update, there has been a lot going on here. There has not been a time with Johnathan that seemed so perilous since way back when he was in the womb, at about 22 weeks old. See "Our Story" in the right column under the photos if you want the background. Johnny's doctors remain concerned and we are right there with them. His heart rate is elevated to 230 beats per minute now. They have his BP raised to a better level but they had to give him drugs that function like adrenaline to make it happen. He has a complex set of conditions now that contradict each other as far as treatment goes. He has too much fluid retention in his chest cavity so they need to give him diuretics to pass it through. When they do this it tends to reduce his blood volume which decreases his BP. The heart rate is a big concern....his heart can't sustain this level of work. At some point if his BP keeps dropping there will not be much else they can try. The doctors have tried several things but he isn't responding very well. His body just isn't adjusting and getting on track after the surgery as they had hoped. We've had a few somber discussions with the doctors. There is one more thing left to try if needed - a medication that they don't like to use unless they are out of all other options, and the doctors have told us we might be getting close to that point.

It's hard to see Johnny struggling like this. He doesn't look so good. We've been through so much with our little guy, and he's been through so much adversity....but it's still hard to see him like this, and his situation so serious. We are hanging in there with him, leaning on each other, offering up prayers, and trying to remain hopeful. He needs to turn a corner soon. We are watching his vital signs and looking for a positive change. We are settling in for a long night. Juliana is home with my mom and dad, and it sounds like she is doing okay but we were hopeful at least one of us could get home to have dinner with her and put her to bed. Say a prayer for little Jules too if you are praying for us. This morning when she woke up I went in to get her out of bed and the first thing she said was, "I want Johnny to come home, I miss him."

I'll update more later tonight.

3:45 pm - Johnny has had a rough afternoon. At about 1 pm his blood pressure dropped again. They moved up the chest x-ray to get a picture of what was going on inside his chest. Now his right side is showing some distress. He rebounded a little about an hour later but then went downhill with more periods of low blood pressure. There is a lot of activity and doctor consultations around his situation right now. His low blood pressure is currently his biggest problem. The chest fluid and high HR are also problems. He also developed what looks like some purple bruising on the left side of his face near where the neck line is inserted - this has his doctors concerned. They are working on him now to insert two chest tubes, one on each side to try and relieve the distress in his chest cavity. The doctors aren't sure what to make of the high heart rate and low blood pressure problem, so that is also a concern. If they know what the problem is, they can typically do something. In this case, they aren't sure, so they are trying a number of things but not sure what will work.

Of all the things he has been through since his birth, this is the worst it has been for him. The doctors are concerned. So please say a prayer for him if you are able. We are praying he will pull out of it, he needs to turn a corner sometime soon. He's been out of surgery about 24 hours now. He is 4 months old today.

11:15 am - Quick update, his BP is a little more stable, but his HR has increased again to be consistently well above 200 bpm, so they are trying to figure out a plan to bring his HR down. His surgeon ordered another chest x-ray at 3 pm to review the status of the effusion on his left side, if the same or worse, they will consider adding a chest tube to provide some drainage. They completed an Echocardiogram earlier this morning and his heart function is good with everything working as it should after his surgery, so this is positive news for him.

8:34 am - The doctors have rounded with several consultations on Johnny and his status. He made it through the night with some improvements on a few fronts, other things have developed they are working on. His BP continues to be all over the map but most of the time lower then where they want it, this morning they tried giving him some Albumen to increase his blood volume and this seemed to help increase his pressures. His fever has diminished so this is an improvement for him. His left lung showed some effusion (fluid build-up) that they are concerned about and will continue to monitor. Today will be a continuous adjustment of several things trying to get him balanced between good blood pressure and blood volume, reduced fluid build-up, and monitoring his pain medication to keep him comfortable.