April 1 (no joke) John will go to TCH for an outpatient procedure called a DL&B. This is just a check of his airway. We do this annually anyway, just to make sure that no granuloma tissue has formed in his airway that needs to be removed. He will come home that day.
April 6 (day after Easter) John will be admitted to TCH for a minimum of 2 nights. That night, they will put a cap on his trach and monitor him while he sleeps. This is the same cap that he has been wearing during the day for a little while now. It doesn't allow him to breath through his trach at all. He has to breath completely through his mouth or nose. We aren't allowed to let him sleep with it at home, so he only wears it during waking hours.
April 7 (DC Day) If all goes well after the first night, they will take the trach out. The stoma (hole in his neck) will be bandaged. He will stay in the hospital one more night so they can monitor his sleep without the trach.
April 8 (1st day post trach) If all goes well after the 2nd night, John will be discharged to come home. And that is when the real fun begins.
This all started about 6 months ago. On July 22, John went in for his 16th overall sleep study. Let that number sink in for a minute. in 9 years of life, he has had his sleep studied 16 times. And it's not like he just goes in and goes to sleep and they watch him. If you saw the amount of junk that they put on his head and body, you would be amazed that he's able to sleep at all. When he was really little, it was a nightmare. He screamed bloody murder the entire time they were attaching all of the electrodes and by the time they were done, he had himself so worked up he couldn't breathe. Now, he doesn't cry but keeping him still long enough for them to get it all on is pretty tough. They usually end up attaching each electrode at least twice after it's all said and done. The other hard part is that I don't sleep well when I'm there. So it's just a pretty miserable night all together.
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| photo from the July 22 sleep study |
On July 29, (ironically 9 years and 1 day after his trach was inserted) we saw the pulmonologist for the results. For some reason, I guess he just had a feeling, Tommy decided to go with me to this appointment. He used to go to all of them, but after a while, nothing new was going on so he just let me take him myself. But this time, he came with me. Dr. K walked in and had already looked at the study. The results really weren't what we were expecting. You see, the two previous studies showed that while his apnea was significantly decreased, he was now having trouble expelling enough Carbon Dioxide at night. He just wasn't taking deep enough breaths to blow it off. So we continued with the ventilation at night to help him get rid of the CO2. This sleep study, however, showed that his CO2 levels were in the normal range, but his apnea was higher than it had been. We were just puzzled. I thought to myself, this is never going to end. But then Dr. K said something that surprised me. She said she thinks it's time we see if taking the trach out will make a difference. Apparently, he still has a significant amount of obstructive apnea and we think that is caused by the trach itself. So if we remove the trach, the obstructive apnea should go away. Also, obstructive apnea can also caused increased central apnea, which is when the brain just doesn't tell you to breathe. So by eliminating the obstructive, we should be able to reduce the central. We made a plan that we would get him through cold and flu season keeping the status quo, and then sometime in the spring we would try decanulation. When this was decided in July, spring seemed like such a long time away. But here it is. February will be here in a few days and before we know it, it will be April. In just a little over 2 months, our world will change. And I am feeling so many emotions about it.
I'm excited because after nearly 10 years, my boy will be able to leave a more normal life. Life with a trach is hard. It goes beyond the realm of having a child with special needs. It means he cannot be near water unattended, and his head can never go underwater. That makes bath time especially tough. It means he is more susceptible to germs because he doesn't have a mouth and nose to filter out many of the bad things in the air. It means we can't just call the teenage girl next door to babysit. We have to hire someone and spend hours training them on things like suctioning and how to know if the trach comes out and how to put a trach back in if it does come out. They can't be left alone with him until they have sufficiently demonstrated they can do those things without me having to tell them. So after nearly 10 years, we will finally have a little bit more freedom in things we haven't had before.
I'm anxious because although this will make our day time routine much easier and will improve his quality of life, it will mean that we will no longer be able to have night time nursing. For nearly 10 years we have had a person in our house at night watching our son. And one of those nurses has been with us since the very beginning. Once the trach comes out, our insurance will no longer pay for us to keep the nurses. This means I will be spending a lot of nights watching John. We will set up some kind of system where I will sleep in the room with him, but that usually equates to not a lot of sleep for me. I don't know how long that period of time will last. So I'm anxious, and I'm sleepy already just thinking about it.
I'm nervous because I know this isn't a done deal. There are a lot of unknowns. This is not a slam dunk. If his apnea doesn't improve, it means he will not get a good night's sleep. His brain does what it's supposed to do by waking him up if he doesn't breathe. But this means that his quality of sleep will suffer. He will be more tired and that will affect his behavior, his school and his development. And prolonged periods of time without good quality sleep can cause organs to begin to fail. So I'm nervous that his quality of sleep will suffer, and my happy, healthy boy will no be as happy or as healthy anymore.
I'm afraid because if this doesn't work like we hope, he may have to have the trach put back in. I've always prayed that when the time came for him to have his trach out, it would be a no brainer. I wanted there to be no doubt that he would be okay without it. But that's not the case. This is kind of a trail and error situation, so there is a possibility that he doesn't tolerate it. And I really don't want to go through the process again of having a trach inserted. That was the worst week of our life because he had to be completely still and sedated in order to let the track heal. I couldn't hold him or even touch him and he did not look like himself. I don't want to go through that again. So I'm afraid because I don't know what the future holds.
I'm blessed because although I don't know what the future holds, I do know who holds my future. Our faith has kept us going all of these years. Tons and tons of prayers have gone up on our behalf and we have received tremendous support from our family, friends and church family. It is very powerful to know all of those people have been praying for us all of these years. We have been blessed beyond our wildest dreams in this regard. But mostly, I'm blessed because I know that it's all in God's hands. He has had this mapped out from day one and nothing that has happened or that will happen will be a surprise to him. We may not understand it, but he does, and knowing that he is in control means knowing that even if it's not okay, it will be okay. He will lead us through the difficult times like he always has. I hold on to the knowledge that one day, we will be with him in heaven, and my little boy will be made whole. No more trach, no more wheelchair, no more diapers and no more lack of communication. He will be walking and talking and doing all of the things he was unable to do on this earth, and that is the greatest hope of all.
You have all been so faithful to pray for us over the years, so I'm going to solicit your prayers once again. Pray for John over the next 70 days that he will have no illnesses or set backs that will prevent this from happening. Pray for him that once the trach comes out, his body will respond accordingly and this will be the end for good. Pray for Tommy and I as we deal with the uncertainty. Our whole lives and schedules will change completely, so pray that we will handle it well. And pray that after our nursing days are over, I will find some way to stay rested. I've been though periods of time with little sleep and it just affects me in ways you can't imagine. So please pray for easy nights once we get him home and settled in.
Thank you all so much for staying with us on this journey. It has been a wild ride, but we wouldn't be near as sane as we are without all of your love and support. And I ask one more thing of you. Share our story. If you meet someone in a situation that is similar to ours, share our story with them. Even feel free to have them contact me. It can be a lonely world when you are struggling with the health of a child. Having someone to share those struggles with, to seek advice from, or even just someone to talk to who you know understands can make all of the difference in the world.
I look forward to the updates in the weeks and months ahead.
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