Kenzie had her first follow up appointment with the ENT surgeon this week. The first time for me to send her off somewhere without me since the beginning of all of this in January. To say it was nerve wracking would be a gross understatement. I had planned on using the ambulette company who took us home from the hospital for transportation to the appointment. The driver even gave me their card telling me to give them a call when the appointment is scheduled. I called a couple days before the appointment to schedule and was told that they wouldn't schedule anything any earlier than 24 hours in advance. I called them back the day before the appointment and was then told that they don't transfer patients from a residence to an appointment. Great...... It is a covered service with our insurances but after calling 8 different companies, I came up short handed. So now I needed to change focus and find a driver and send her with a nurse but without me so I can be Taylor's nurse. Their Dad stepped up and said he would do it. That was a huge help. Now that the transportation was figured out I was free to go back to stressing over everything that could possibly go wrong. Not just with the transportation but with what could go wrong with the appointment.
It didn't help any that Mackenzie was still having issues with mucous plugs. It may not sound all that serious, it isn't like you take an expectorant and blow your nose. For Kenzie it meant that she is struggling to breathe because her mucous has thickened and dried up so much that it is stuck in her lungs blocking her airway. You will see her struggling, trying to cough, turning different colors, and watch her oxygen saturation numbers go down despite already giving her 2 liter of oxygen. Your lucky if it dislodges. I called the pulmonary office and asked if they could see her while she was there for the ENT appointment. They told me that her doctor was not seeing patients that day but that they will have her call me. Close enough...
It was now time to send her off. I packed everything you could need to try to keep someone alive and quizzed both the nurse and her Dad on what they would do if an event happened.
She made it to the appointment fine and while waiting to see the ENT surgeon I got a text from the nurse telling me that her pulmonary doctor had just stopped in to see her! She personally left her office and walked over to the other clinic and examined Mackenzie. That's incredible to me. I'm just so grateful for the willingness of her doctors to help her.
Taylor and I sat outside on the porch swing (me in the swing and Taylor in her wheelchair being pushed by my foot and the motion of the swing) in an attempt to relax and not worry so much for Mackenzie.
Once Mackenzie made it back home and I got a report from the nurse that everything went great, I felt like I took my first breath that day. The erosion is almost undetectable, the tube length is working out great and she tolerated the procedure well. They took a culture of her sputum from the order of the pulmonary physician. The pulmonary doctor called me later that same day because the ENT surgeon hadn't made any notes in her chart yet and she knew that I had questions that she deferred until they had finished scoping her airway. We talked for probably 30 minutes about Kenzie's new level of care.... what I've seen, what I've tried to do, what they have diagnosed her with...
It was the first time since Kenzie has come home that I felt like I was talking to someone who understood me and all my concerns for caring for Mackenzie. That's the other part of this... I'm alone. As many friends and family that I have that care..... I'm alone in all of this. No one has ever stood beside me and witnessed what all I have witnessed with my girls over all these years. No one has ever stood beside me and witnessed what it was like taking care of Mike. How can anyone possibly understand me? Talking with this doctor who has helped me come to grips with Taylor over the past 8 years when I had to decide to allow her trach tube and vent, was the first time that someone understood me. Lately I've had some comments from people that I am overreacting when she is fine. I can promise you I am not. I'm not perfect but I don't exaggerate. If anything I play it down so other people don't freak out and feel uncomfortable around me or my girls.
She understood my need for guidance on how to prevent things with Mackenzie and not just constantly react to traumatic events. Her airway and lungs were so damaged by that flu and what it took to keep her alive. It will be years before she is out of the woods, if ever. My daughters are fighters, they kick ass. They deserve to be as happy and fulfilled as possible to make all this fighting worth it. That's my goal. In order to do that I have to reconcile the fear with the happy. I can't get rid of either of those feelings.
I had no idea how much of my taking care of Mike would come flooding back with all these new events with Mackenzie. Let's just throw that on top of my feelings I can't get rid of. Every time I witness Mackenzie struggling to breathe, I think of Mike. I think of Mike and how there wasn't a damn thing I could do.
That's an easy concept, right? None of us are God..... blah blah blah.... but the truth is that I expect of myself every thing I can possibly give them, that's where what I do keeps them alive. It kept Mike alive longer than most thought. I worked hard to keep his blood pressure up and lungs clear and fevers down and skin integrity good for the 2 years he lived with us. It kept him alive. I was in fear of losing him plenty of times during those 2 years, but I was also happy. Happy.... that's another easy concept, right? I want it.... I want happy as much as I want healthy. That's what makes all this work. Despite all the shit that Mike and my girls have had to endure in their lives, they are and were happy. If they can live with fear and be happy, then so can I.
This entry kind of rambled. oh well.......
Saturday, April 22, 2017
Saturday, April 15, 2017
My daughter, the miracle and how she smiles though it all
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.
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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