Making Progress

It took them a couple hours to get the PICC line in, but they did get one in. We had to leave the room while they were doing the new line so we didn't get to see him for a couple hours. When we came back in the room Michael had his little face mask on and was looking around like there was nothing wrong. He looks great, his color is back and he is squeaking away. What a relief it is to see him with eyes open kooing again. He looks a little crazy, but that is not bothering us one bit. You can tell he is very comfortable and happy to be breathing again. He is annoyed by his arms being wrapped up but when he is able to get them out he starts pulling on stuff. I think if they allowed him to have a free left arm he would be much happier. Our nurse said the more pissed off he is about having that thing the better. Everyone continues to say how impressed they are by him. They usually do the PICC lines while the children are sedated but since he is in a fragile state they had to keep him awake. The nurse said he didn't make a peep, she was giving him sugar water to keep him happy. She said he did amazing.
We also had a nice long chat with our doctor, she said he looks amazing compared to this morning.  She also warned us that with his specific condition we are walking a long road.  There will be a lot of balancing and keeping a close eye on everything. Even though he is a little trooper, he is still on that fragile teeter totter. We have to make sure he has a good diet and nothing we do tips the scales. We both feel very comfortable again and are probably going to try and start sleeping at home with Zoey. We love our little soldier, he is an unbelievable little person. Thank you for all the prayers! We are making progress, he is still in that critically stable condition but he looks awesome and appears to be doing great since taking him off the sotalol.

Critically Stable

We just woke up and did rounds. Michael is in a 'critically stable' state. He did not tolerate the flutter or sotalol very well. He is back on a breathing machine and has a scalp IV now. They are possibly going to put a PICC line back in and another arterial line. They can't sedate him because they don't know if he will be able to handle it. He is now under pretty close supervision by the doctors and nurses. They were told to watch his monitors very closely and stay at his bedside. Bryttney and I are worn out. This is exhausting and now there seems to be no end in site. They are all amazed at how much he can handle, but apparently the sotalol was the tipping point. They are trying to let him balance himself out again. His lungs are very wet, they are calling it a 'white out.' The Gradient of his mitral valve is pretty bad and they think that is what is backing up the blood into the lungs.  We don't have any answers yet, but from the sounds of things this morning it sounds like they are going to try to find that sweet spot again. They will try to get him to a point where is stable enough to eat and grow and then worry about his mitral valve later. If they can't find that balance they might have to start thinking about surgery again. Thank you all for your support, it is hard to have any emotions at all during a time like this. I don't know if I'm sad or worried or what. I am just numb. I am glad he is getting extra attention, but we are both in a state of melancholy. This is draining and exhausting. I think we are going to try to give him a blessing today. He Seems pretty comfortable, but hopefully we can help the doctors find the best cure for him. It feels like we are back at square one.

An Acute Change

After waking up to red alarms and being worried for your babies life, it is hard to get back to sleep. We have had our eye on his stats and he continues to be all over the place. His oxygen is still in the high 90's but his respiration is also near 90, and his heart rate is all over the charts, going from the 80's to 160.  We kept trying to comfort him because he was a bit whiny, he sounded like he was in pain. Bryttney was rocking him and cuddling him and singing to him. He just kept making this moaning noise, he usually koos, but not like this. I went over to check on him and he didn't quite look right. He was starting to get pretty dark, it started with a darker red all over his body and quickly he started turning purple- a dark purple. It was unmistakably a bad sign, he started to break out in a sweat. Our nurse was trying to take care of another baby, who also happened to be having some red alarms.

I just grabbed the closest nurse I could find, she had been kind of helping out through the night because I kept going out and grabbing people. I told her he didn't look or sound normal and she came to see him. She turned on the lights and within minutes the room was full of nurses and doctors again. 

This time it was way more serious, it was obvious that he was not doing good. He was purple and could not breathe, he was moaning in pain, and he was sweating all over. Bryttney started to lose it. We had to leave the room and go take a breather. We hid in the lacation room and said a prayer asking for comfort. She was having a really hard time. I had to know what was happening to him so I went back to check on him while Bryt waited in the lactation room. He had three guys around him with a pump and oxygen, I couldn't handle being in there so I grabbed our stuff and told the nurse we would be out in the hall. 

When I got back to Bryttney, she asked if I had ever felt like we were only supposed to have him a short time. I am at a loss for words. I don't know how to respond to such a question. I want to say everything will be ok of course, but the last two days have been so scary and unpredictable I don't feel confident in any answer.  We came into this ready to deal with anything. This is much harder than anything we were prepared for, he does not look good. It was not a conversation either of us really wanted to have, and neither of us really wanted to say the words. We both agreed that we would be patient and calm and try to deal with whatever was going to happen. We both felt calm, but I also started feeling physically sick. I can't begin to describe the thoughts in your head when starting a conversation with your wife about whether you think your child will make it or not. I don't know if we are over thinking or over reacting but I think we are both worried about even putting the thought into the universe. But I also think we both had to confirm with each other that we were aware and ready for the worst. 

I had to go check on him again, I only saw him for a brief second before I turned and walked back to Bryt. His color was starting to come back, but he was looking pretty pale. He wasn't dark purple anymore so I think that was a good sign. He had 4 nurses around him putting stuff all over him, getting him more medication, pumping him with oxygen, taking blood samples, and doing an emergency X-Ray. I couldn't handle being there and I knew Bryt needed me. This would be hard for anyone to take in but I am trying to be strong for her. The doctor stopped me as I was leaving and told me that the slow heart rate in combination with the deformed mitral valve had backed up a lot of fluid into the lungs and he was not able to compensate. She said they were going to give him more lasix to help get the fluid out and also some dopamine to help counteract the sotalol. Sotalol is what they gave him yesterday to help slow down his heart rate and get rid of the flutter. Dopamine will speed up the heart rate.

We waited out in the lobby for about half an hour, when we came back into his room he was hooked up to two more medications and oxygen. There were only two nurses left and they were just leaving as we got in the room. I think he is somewhat stable now. He is still breathing a little fast but he has good color and a good heart rate.  There is a new team of doctors here now. I will update after we talk to them. I am guessing we will be in the ICU for another couple days.

4am Alarms... ugh

It's 4:00 am, Bryt and I have been 'sleeping comfortably' on this pull out bed thing. We woke up this morning to his alarms going off again. His heart rate was dipping down into the 70's and had an abnormal rhythm again.  Our nurse was on lunch and the nurse that was covering was suctioning a different baby. His heart rate was going up and down from 70-100, but never got up to his normal 140. I went walking around the CICU, looking for a nurse. I didn't see any familiar faces so I just told the charge nurse. A couple minutes later there were 3 nurses and a doctor in our room. They were all checking his pulses and discussing the rhythm patterns using lots of acronyms. The nurses seemed a bit confused, but when the doctor came over she asked when he got his medicine last and then told us this was one of the side effects of the medicine. It usually shows up 3 hours after they get it and he got his last dose at 1. They need to talk to the rhythm specialist again and see if he is on too much medicine now. 

If we have learned anything here it is just to be patient and trust things will work out somehow. Every kid has a different story and the doctors don't have a simple 'one size fits all' method to fixing them. They each have their own individual issues and require constant adjusting. Every morning there are rounds where all the staff come and discuss his condition. They each give their own opinion and then agree as a team what the best next step is. A lot of the times, it is something they are going to try and see if it works. None of them seem to have 'the answer,' and whenever you ask for any kind of time frame, you always get "we'll just have to wait and see how he tolerates it." I think we are finally starting to accept the alarms and the constant ups and downs. This is a roller coaster ride for sure. It would be nice if we knew when the next turn was coming.