Thank you Cait for your sweet email last night! I would be happy to give everybody an update on Braden’s health. Since this is more nuts and bolts, I hope you don’t mind the bullet point style type update. While my emotions are more free-flowing, I “handle” the medical situations in a more tactical type manner. That’s just my self-preservation kicking in!
- Pulmonology: In short, it’s an issue. What used to just be a coughing until we vomited situation has now become a mucous plug problem. Braden’s lungs produce mucous like a Cystic Fibrosis patient. He attempts to cough but his lungs aren’t as strong as a typical child. The mucous gets stuck in his esophagus that is too soft (tracheomalacia.) So, the mucous creates a plug making it hard for Braden to breathe. We are working on this situation. While there is no medication that can assist him that we are aware of, we are looking into cough assist and percussion vests. This will be in addition to his inhaler, hand held percussor, nebulizer, and suction machine.
- Immunology: We have been in a sinus/ear infection cycle. Due to his IgA deficiency, Braden has excessive nasal drainage. The stagnant nature of it causes it to fester in a manner of speaking and it becomes infected. We are hoping that this last round of antibiotics does the trick for at least a few weeks!
- Gastro: We are continuing to deal with our normal bag of tricks in this realm. We have noticed a slight tick up in the amount of fecal incontinence issues here.
- Orthopedic: Braden’s feet are turning inward a bit more than they have in the past. We continue to stretch his legs. No medical intervention or devices are needed for this at this point.
- Mobility: We continue to fatigue more rapidly than before as expected. Braden uses a chair for distances but is ambulatory during play and for short distances. We have shown an increase need for assistance with smaller tasks.
- Neurology: We have noticed a slightly longer delay in responding to questions. This is due to the deterioration of his cerebellum. We continue to have the same difficulties with tremors and such.
- Cardiology: Knock on wood. Still all good here!
- Nutrition: We have not gained weight in a year and a half. This is largely due to the extra movements. Children with A-T move continuously to counterbalance their ataxia. This burns calories. It also takes more effort for our children to eat burning more calories. So we stuff as many calories into him as we can. There is always a green light to feed him those foods in which most parents would say no. At some point we will be “forced” into considering a feeding tube to get that critical nutrition.
In short, how sick is Braden? It’s hard to say. The breathing issue is our biggest area of concern. It takes diligence. We have to pay attention. One ear must always be trained to listen. We do our best to simply live as normally as we can. We have days where everything is just fine and then “boom” we have a breathing situation and those moments are very critical. Then there are those days where you would swear something could easily go wrong and everything is just fine. So, you just never know. There are a few things that lead to death in our sweet children: lung failure, infection, and cancer. Despite the writing on the wall, we are doing all we can to focus on the LIVING and LOVING life. It isn’t uncommon for Braden to not be able to breathe, cough, vomit, and look like hell, and then just minutes later be a giggle machine. May that never change!
Please hug the people you love and tell them so! Life is a gift and not a given.