Here we are, struggling to breath again. I am having a hard time with Kaesyn being sick this time. I try to accept it, and I know he is sick. I just can not process in my head to how sick he is I guess. I don't see Kaesyn being a "sick" child. He laughs, he plays, he walks, he talks, he eats, but apparently he doesnt breath right. Everyone of us everyday fights to live another day, we take risks everyday not knowing what may happen the next. But with a child who can not breath, have bigger issues beyond that. Watching my child breath and seeing him fight for that next breath seems crazy. Never did I think that I would be in this situation. When I read my blogs, or I think about it too hard, I think Im being way too dramatic about it, because Kaesyn just does not seem that way. But reality is, he fights for every breath he takes.
He had been doing well for 2 months, it seems so much longer than that, but we went 2 months with no hospitalizations. Now we are on that very edge again, infact I could take him now and they would admit him. But what is the point? We have a diagnosis, we have a treatment plan, they can do just as much in the hospital for him as I can at home. Id much rather be in the comfort of my own home, and knowing I have people to call when I need to.
His sats are okay during the day, they usually do not go low enough during the day to where he needs his o2, but you can tell he is fighting hard to keep it there, so I will help him out and give them to him.
I watch videos of children with similar conditions and it breaks my heart, because they are horrible, and then I Feel bad for reacting the way I do about Kaesyn, but really, if I had a video of Kaesyns down time of being in and out of the hospital his would be the same story as the rest.
Last night I heard the alarm on the pulse/ox go off so I of course run in there and its blinking in front of my eyes, 90,89,90,89,88,89,87,86,85,84,83,89,90,88,76,88,85 84.(not in exact order, but somewhat accurate) Of course my jaw is dropping with my phone in my hand ready to call the ER to let them know we are on our way, but then hed wake up and have 95-96 again. Everytime it would lower I could see it in his belly, itd pull harder and harder everytime the numbers would drop, he would even cough, or wake up for a second and as the number started to rise hed fall back to sleep, then itd go lower again. So I know it wasnt just an error. I let him do his thing for a few minutes before I give him is supplemental oxygen so that way the pulse/ox was able to record it so that next time they take the readings we would have him desatting on paper, because according to Dr. E he should not have low sats for just his tracheobroncomalacia.
I have so many thoughts concerns and emotions in my head. First of all Im really not even sure I understand this condition fully. Yes I understand its "floppy airway" And that the cartlidge in both his trachea and bronchi are undeveloped. But how undeveloped are they? Is it his right bronchi or his left bronchi? Some parents have a percentage to how mcuh their childs airways collapse, but I cant get an exact answer for Kaesyn. I think that maybe if I knew more about Kaesyns specific severity I would be able to understand more, and not feel so crazy at times.
Even though I have met some great moms who have and who are going through this journey, I feel so alone. I feel as if no body gets it. How can anybody possibly understand what this whole journey feels like. It seems as if everybody else has someone to lean on when they can not be strong anymore. But I have no one, I have family who is concerned but no one has ever been with me at his Appts, his procedures ect. Which is no ones fault,I guess, but it would be nice to have that one person that cares and is just as concerned as I am, or to catch something that maybe I have missed. There is sooo much information you have to take in at one time,its impossible for me while Im chasing Kaesyn around to remember everything. I
Its hard to stay strong when there is no body by your side. Its really hard for my family that is not with us all the time to see Kaesyn sick as well. They dont see him through his coughing attacks, or his struggle to breath. It is hard for anyone to think that there is in fact NOTHING anybody can do to help Kaesyn when he goes into his episodes, unlike an asthmatic child, we dont have a medicine to have them inhale to help them a little bit. And the one we do have (atrovent) does not help Kaesyn. He is on such a high dose of the other nebulizer med (pulmicort) to where our pharmacist called just to make sure Dr. E wrote out the RX dose right. None of this phases him. I find myself holding him through his attacks and trying to think of something I can do, I just know at that point, something can help him, while knowing at the same time there is nothing to do. So I call the ER to see if they have suggestions, of course everything they suggest Ive already tried and back to square one. Then once his 45 minute episode is over he goes back to his 1 year old ways and I feel lucky we made it through that time. I really wish though that more people understood. Like I mentioned earlier about the videos, I thought about doing them so that maybe some people would get it, and have some emotion and reality about what I go through on a daily basis, so maybe Ill do that as time goes on, if I can. Its hard to take a video while your comforting your baby who is fighting to breath.
On a good note though, we heard back from CHOP, and we will have an appt day soon. Hopefully it will be easy to get insurance to help out with it. I really think that this would be great for Kaesyn and for I. Atleast for the second opinion ya know? They have a whole team of Drs that would sit all together and dicuss everything with me, which is what I need. As of now we see a Pulmonologist, Neurologist and a GI doctor at Childrens Mercy, and they are all seperate so we are lucky we even talk to one of those Drs in the same months, so to have them all sit down and explain to me which one effects what and how we can make it easier on Kaesyn.
As horrible as it sounds and I pray it never comes to this and I would totally have disagreed with this 4 months ago, but after talking to several parents who have been in my shoes, and with parents that have had children struggling to breath, and if I knew next fall/winter was going to be just as hard on Kaesyn for sure, I would sadly agree with the decision to Trach him. It hurts so bad thinking that, and I feel like an awful person. But the stories I have got, the children seem so much happier. They can breath for the first time, they can be happy, they sleep through the night, they dont have thier choking attacks. And its not forever, its for a year or maybe two so that way their airways can develope. It makes sense to me. If I knew for sure, with no doubt that he is going to have a hrd time next winter to where he sits at 92% on a GOOD day everyday, I wouldnt hesitate. I think that if it came down to this being the only option, it would be selfish not to let him breath easy for the rest of his life. Am I right? Lets hope it would never come to this and by some miracle he doesnt get anymore sick than a healthy child will next winter.
As for Kaesyns development, he has been doing awesome, he now says Mooo and Ruff Ruff and ooo oooo(choo choo)when he sees a train. I can also ask him where his nose is and his finger goes right up his nose (or mine) and he also knows where his eye ears and toes are. Cant forget the mouth either, thats the most important for thats where he puts EVERYTHING!!! Gabby is out of school for the summer, it gets a little bittersweet having her read me books, and write me little letters. I love it!!! We started a new behavior system, as we do have a few fun trips to plan for the summer, however she is getting a little spoiled and I really want her to know how to earn something (since she never has had to do that in her life!!!!) and to appreciate the things everyone does for her. So hopefully by the end of this summer she will be able to do that!!!! She sure is growing into a beautiful sweet young lady really fast. Like I say, Im sure glad that they turn sleepless nights into joyful days or else I wouldnt know how to go on!!!
I think thats all, I Can sit here forever and go on and on about how I feel and what I hope for, and what irritates me, and even longer about what I dont understand. But I think I have all of it out of me, and I Feel better being able to get all my feelings out. Hopefully soon we will have an update on CHOP!!
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