When Mackenzie came home from the hospital with her trach and vent, I thought that I could manage her at home and we wouldn't be back up there for a very long time. The last blog tells you that that didn't happen, but then I thought ok..... she's good now. Then a week ago she started having asthma symptoms again that couldn't be managed at home. She was brought in to the hospital by squad and admitted. This is where the miracle happened.
The attending that was on that weekend was the one you want if your kid is critical. I have never doubted him, ever. Which if you know anything of me by now, I doubt everyone. He looked at her... that's what he did. He stood and looked at her. That's all he needed to do to know that she wasn't having an asthma attack that would respond to albuterol. Against what would be normal, he wanted to take her off the albuterol and instead have the pulmonary team come in a scope her airway. They did.... which is another surprise since it was on a Saturday. The Attending was in the room watching the procedure. I believe he was doing this because he wanted to make sure they found what he thought to be true. Without any indication he ordered the test that saved her life.
From the scope they were able to see that he trachea had eroded from the pressure of a trachea tube that was not a good length for her. Eroded.... let that sink in for a moment.... her trachea that needs to be intact to sustain life,..... eroded.
After that finding he asked the ENT attending to come and look at her. They did and decided that she needed to go to the OR to get a better look at her trachea and to put in another sized tube. The tube needed to be longer than the eroded area so that no pressure was placed on it causing further damage.
After the OR, they found that the erosion was more significant than originally thought. Part of her cartiledge had also eroded and right on the other side of this erosion was a major artery. If it had eroded any more, it would have hit that artery and she would have bled to death. This likely would have happened at home, with no reason to think anything was wrong.
The consulted the cardiac thoracic surgeon so if she were to need emergency surgery, they would be familiar with her. They also ordered a CT scan/ angiogram. Luckily the artery was still intact.
Now we wait..... we wait for a custom sized trach tube to be delivered and we wait for her trachea to heal enough that it wasn't life threatening. They told me to expect up to 3 weeks for it to heal.
This was on a Monday, on Friday they had the custom sized trach tube and took her back to the OR to scope her again and to put in the new sized trach tube.
The doctor came out of the OR and told me that the tube is the perfect size for her and that we can't inflate the cuff because the erosion still needs to heal....but..... it had healed in 4 days more than what he thought it would have in 20. 4 days..... in 4 days this erosion had healed enough that should could go home.
So not only was this erosion a miracle that it was found, it is another miracle that it healed so quickly.
The other finding was that in addition to this erosion, the left branch of her lungs had developed what is named bronchial malasia. It collapses with every exhale. It is theorized that this has been an undiagnosed condition for what is likely years. The only treatment is the use of the ventilator at a higher PEEP setting.... which the critical care attending physician had already done. He had already made the change to give her the treatment for what had yet to be discovered. Let that one sink in too.....
Once he told me that the only treatment was the use of the PEEP, it dawned on me that Mackenzie will not be coming off of her vent as I had previously hoped. One tear, one little tear fell from my eye. He saw it and then HE realized that that was new information for me. The next day during rounds, he very casually said.... if you were to look back on Mackenzie's chest xrays over the past 23 years, you would see that her left lower lung has been getting progressively worse. You could still make a case for her one day coming off the vent if this has been something she has been living with for years without needing ventilator support. I could have hugged him..... seriously clung to him saying nothing but thank you. He did this.... he took his time and researched this for my baby. After rounds he came back by (which is what they do there) and when I saw him walk in I just said "thank you".... His response was "I didn't just do it because you were upset". Odd thing to say right? It was the perfect thing to say. He said a lot with that one sentence.
So many times my daughters have had their life extended from this doctor. One man, one blessed man, one gifted man who pretends to not be emotionally involved .... has saved her life. We are so lucky.
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