I don't know any other way than to just say it. Our littlest guy is not okay. . . Samuel needs prayers. His lungs are worse than we thought, and our medical options are extremely limited. What we have is hope, faith, prayers for a miracle, and a wonderful medical team that loves Samuel.
Our baby is very sick. I will go into more detail - but Samuel has been intubated, medically paralyzed, and heavily sedated since Friday night to get, and keep him stable. Our hearts are breaking.
Here is the long version... as we understand it so far...
After a successful tracheostomy, Samuel was breathing easier and looking fantastic! He loves to read books and make lots of eye contact with visitors, so the trache was great because it allowed him more freedom. But, routine tests were continuing to puzzle us... for example the CO2 level in his body was going up and up and eventually off the charts. There was talk of reintubating him - back on the ventilator again was hard to swallow. Prior to making that type of decision, pulmonology and our attending neonatologist consulted and decided to get a CT scan. They don't routinely do CT scans on BPD babies... they even told us going into the scan not to expect much out of it, but they wanted to cover all bases, even those not routinely used.
What the scan showed was devastating. It was also completely unexpected... from what we understand, most BPD babies don't have these results. But, it does explain his pattern of crashing. The team actually went over the scan numerous times to be sure of what they were seeing. Everyone was amazed that Samuel has done as well as he has with what is going on inside his body. Samuel has very little "good lung"... large portions have cysts and signs of pulmonary fibrosis, which are like scars where the lungs have been damaged from the very thing keeping him alive - the ventilator and high levels of oxygen. These bad portions are so large and numerous, that they cannot be removed. In addition, the parts that are good, aren't great.
Here's the easiest way I have found to describe the scars, and then treatment plan... normal, good, lungs are filled with air sacs that look like spider webs. This is where the O2 and CO2 exchange happens. Instead of the webbing, Samuel's lung have big cysts which create 'flat' surfaces. Therefore, when the oxygen comes into the lungs, instead of being processed through the air sacs (spider webs), it takes the path of least resistance, which is to pass through the flat, scarred surfaces. When this happens, there is no O2/CO2 exchange. This is where we get into serious trouble.
Therefore, it was determined that the best treatment plan would be to go back on the JET ventilator, which delivers literally hundreds of little breaths every minute. Instead of big puffs of air, the little breaths would be forced to go though the air sacs and get the O2/CO2 exchange. Plus, this allows the scarred areas to collapse, with the hope that with time the good air sacs will grow and multiply. Because he is such an old baby (bigger and stronger than most in the NNICU), he would have to be paralyzed in order to get him to relax and not fight the JET. With the paralysis comes heavy sedation, so that he won't know he's paralyzed and be scared and uncomfortable.
DB was already at the hospital visiting when all of this was determined. I was called immediately. Omi and aunt Nancy were on their way to the house to watch Olivia and George. Because things were looking so grim, the plan was for me to be able to hold him for one hour... just in case. We made eye contact, he heard my voice, and I held him for 5 minutes. It was truly amazing that they had put the plan in place. He started crashing... and as DB and I held his blue little hands the team bagged him and kept him breathing. Just then the JET ventilator arrived - it had been ordered from another hospital in another state (all at our hospital were already in use) - and the RT's were furiously preparing it for our guy. The paralytic and morphine were already on hand, in addition to other drugs that I can't spell - in they went. And out he went... into medically induced paralysis. He was hooked up to the JET, and we hoped for the best.
It was the worst night of our lives. But 24 hours later, he was considered stable... with the understanding that one bad event, and we could lose him. Tonight, we are still in the same place. The medical team has worked for the last two days to find the perfect JET settings, and tonight he seems comfortable. His O2/CO2 exchange seems okay... his heart rate seems okay... and he looks relatively rosy, just like a little baby should. We celebrate that!
We celebrate, but in the same breath we are terrified, and sad, and hopeful, and praying for a miracle. We find out more tomorrow, but it seems that we may only have two options... to work towards a possible lung transplant or for a miracle. We're not even sure if he is a candidate yet for the transplant... but short of a miraculous healing of Samuel's air sacs, it may be our only option.
Tonight we were asked to be thinking about what we would want if Samuel crashes... Four days ago he was on the verge of smiling and we could hold him in our arms. We are in shock. We are asking for your prayers... for our entire family of 5.