Thank you all for being patient with me while I updated my Twitter while being at the hospital, trying to not break down with all the crazy news. I went in to this procedure with full confidence that Kayleigh would not need a trach and that she would probably just come off the vent with no troubles during the procedure.
Well, it didn't happen nearly the way I wanted it to. In fact, it was worse. I am going to try to explain it as best as I can from what I know so far. As you enter the esophagus, there were two swollen bubble like processes that are called "tongues." Once the vent tube was removed, these tongues would swell up until it closed the full opening of her airway. They called this Malacia, which with a trach, medication and time, it would fix itself. Unfortunately, this was the first and smallest issue the doctor came across.
After proceeding down the throat, he came to where the airways divides and leads to the right and left lung down an airway called the bronchial tubes. There was not enough air pressure from Kayleigh's breathing to open either of these bronchial tubes. The left one was shut tighter than the right. Kayleigh would be able to blow air out, but not suck air in which would cause her to suffocate. The air pressure from the vent was pushing the air through this tightened airway and then Kayleigh could breath it out with her own pressure on the exhale.
So, now we have identified a problem and we know that pressure pushed in to her lungs will allow those bronchial tubes to open to allow air in (Great!). We also have learned that this problem "may" heal itself with growth and time and that amount of time could be years.(I can live with that!) But the problem now is deciding which device to use to help push that air in (Hmmm).
Being that this issue is going to take years for Kayleigh to grow out of, a vent ET tube is not meant for long term use as it could cause other damage in the throat. Also, when Kayleigh starts grabbing at things and realizes what is gagging her, she will extubate herself on a regular basis. Not to mention, she will never be able to go home on the vent because it takes x-rays to make sure the vent tube is inserted properly.
The second option is a trach, which I think is going to be the route they will take. The problem is, the trach needs to withstand the pressure being pushed in the lungs by the vent/respirator and only a certain trach can do this. This type of trach (which the respiratory therapist mentioned) doesn't come in Kayleigh's size. Kayleigh's tube right now is a 3.5 and the trach size is for a 4.5, and it could be a year or so before Kayleigh can get to that size due to how small she is right now. So, are we supposed to stay on the vent until she is big enough? Maybe, but we won't get those answers until Wednesday.
The doctor mentioned there is a stint they could put in the bronchial tubes, but the stint can not be placed in the right one because of where the airway opening is that goes to the lung. Plus, the doctor mentioned that doing this procedure has a high failure rate. That didn't give me a nice feeling in my stomach, but before I could even react to that, the "World Renown" specialist said he has never seen an issue like this before, and in such bad shape (on top of that). He wants to speak with his associate who he has worked with for many years, but the way he seemed to not give me the conclusive answers I was looking for, it almost made me feel that he was dodging my questions maybe because he was baffled with such a unique situation. As a professional in my field, I know when a situation is beyond my thought process when I have to say, "Hey, I just don't have any answers right now, but I need to think about it and consult with me team."
I don't know about you, but that scares me! Although, I look at the whole picture and this must be another thing Kayleigh is going to just shock the world with. She is going to make this such a situation where no one is going to understand how she overcame yet another obstacle that was supposed to be too big for her. She has done it several times before and she is going to do it again. I am just amazed at how many things one child can deal with in a short amount of time. This has got to be a world record of some sort.
All we can do is continue to hope and pray that we get the answers we need to prepare Kayleigh to overcome this problem. We know she is one tough cookie and she can handle anything placed in her path. God is certainly in control here and we need Him to bless our child with another miracle to show people the power of prayer and trusting in God is what will bring Kayleigh through this.
Thank you so much for those who sent in photos. The bracelets should be arriving soon or have already arrived, so I look forward to seeing your photos for the scrap book. Thank you everyone who has offered to help us with the blog makeover. We have picked a company who has offered to do it for free and is also going to help us do some other really cool ideas. I am looking forward to sharing our new blog look and new ideas soon.
Thank you all for being there for us through the good times and the bad. We could not have made it through this without your support. You give us great questions to ask the physicians and your prayers are unbelievable. God Bless every single one of you out there and thank you for sharing in our journey with us. Sorry Kayleigh is giving you all high blood pressure too :)
God Bless,
The Freemans :)
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