My Son Can’t Breathe

Jacob is a delightful little nine (almost ten) year old. He has struggled with his health his entire life. It started at birth with jaundice and constant tummy pain and crying. When he was six months old his little airway locked up tight and he was airlifted and intubated in intensive care. After that he was hospitalized six more times due to respiratory issues by the age of two.

I found out this fall that my little man has finally outgrown his childhood asthma (or only has a small lingering amount) and that he hasn’t developed any new allergies aside from a slight dairy allergy. All good news. Unfortunately his little immune system numbers actually dropped over the years. He is now hovering right at the bottom of normal and I can guarantee that if someone sneezes within ten miles of him he will get sick.

When Jacob gets sick he takes it very seriously. We aren’t talking a sniffle and a cough here, we are talking about full blown croup. Every. Time. Croup is an upper respiratory issue that they said he should have outgrown at the age of six. They did a scope on him a few weeks ago to see if there was structural damage from when he was force intubated as a baby but could not find anything other than mild narrowing of his airways. He has been referred to another Pediatric Pulmonolgist and a Pediatric ENT at Children’s Hospital. We can’t get in until the beginning of May.

In the meantime he keeps getting sick. He has been to the doctor somewhere around eight times or so in the last six weeks. They all kind of run together. They keep putting him on steroids to open up his airways, he uses his inhalers and home medications diligently, and he will get better and then worse. We don’t have a choice on the steroids, as there is very little future in not breathing. He keeps getting diagnosed with croup (and pneumonia once) and we are just waiting it out until he can see the new specialist.

Jacob has missed about 30 days of school, mostly this fall. I can’t send him if he can’t stop coughing and is struggling to breathe. Two or three times I have sent him when I felt he was having a good day only to have to go get him because the coughing wouldn’t stop again. He is on a 504 plan that I can’t seem to get the final draft of, which is very frustrating because he could very well be reported truant without it. Of course, it took me from September to January to get the new coordinator to even meet to put together the plan. She is new this year and on a power trip, making all of the wrong recommendations about all of the wrong people. Mostly I think this is because she doesn’t know the families and what they are all about, and partly because she is new and obviously is not good at reading the big picture. I don’t trust her at all.

In the 504 plan Jacob was to be allowed to view the classroom core lessons in Google Hangout, however, each time that I have asked since January I have been denied for one reason or another. This is very disheartening and I have been thinking very strongly about enrolling him in an online school for the remainder of the year. They would still require attendance and would honor his current (or apparently not current) 504 plan. I just don’t know if it is the right choice or not.

If the 504 coordinator was a little more forthcoming or would voice her thoughts I would feel a lot more comfortable, but she just ignores my emails completely. This makes me more than nervous. I don’t need to deal with courts regarding truancy. I have saved every email, every doctor’s visit and every communication – his absences are very valid and documented, but the procedure would not be easy. I also would be concerned about his father trying to step in at that point. He is getting a new wife from the Philippines and keeps making comments to Jacob that he could come live with him. These comments terrify Jacob, as he does not want to live with his father but is too afraid to tell him. He doesn’t even like going there on his every other weekend. I will be his voice if that day arrives, and thankfully he has told all of this to his counselor, and she would be more than happy to have them subpoena her records – it is just a road I would rather not travel.

His school counselor (he met her every week for a year) recently switched jobs (for very good reasons) and he is devastated by that. He told me flat out that she was the only one who “gets” him and that he didn’t want to work with someone else and have to start over again. My poor anxious little guy. I would be anxious too if I was always in and out of school, sick a lot and was getting pumped full of steroids that he says make his “insides shake.” We need a solution for this! SOMEONE has to have an answer. I am placing our hopes in the hands of the new specialists. He could use your prayers as well!

At night when I can’t sleep I often watch him sleep. Often it is because I am monitoring his breathing, but sometimes it is just because I am so thankful to have this wonderful child in my life. He has health problems, but you would never know it unless you met him when he was actually sick. He just powers through. He has anxiety and borderline ADD. That’s okay too, we can handle it. He is my little Tae Kwon Do superstar and excels at tournaments, inhaler in tow. He gives hugs and snuggles and has a huge, huge heart that I am very proud of. He is kind to people and animals and helps me train service dogs better than some adults. He loves to play outside, to hunt and fish and ride his horse. He loves to climb trees and practice shooting his .22. He plays with his dog, rides his bike and gets skinned knees and unintentional mouths full of dirt when he crashes. He makes me smile and laugh every day and am I ever grateful for this sunshine in my hectic life.

 

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