Pulmonology Follow-up

Logan saw the pulmonologist last week. This was a follow up visit after his hospitalization for pneumonia in August. I was nervous about this appointment. These are always tough visits that bring a ton of emotions.

We started the appointment with Dr. K asking where we are with a diagnosis. I gave him a recap which provided no new information. I quickly sensed frustration from him. At every appointment, Dr. K always stresses the need for a diagnosis. I didn't fully understand this pressing need on his part until this visit. He explained (remember this is in my own words and is a little fuzzy), that a diagnosis would give us a prognosis for his future. If we knew what we were dealing with, we would better decide how to intervene to lessen or stop his chronic aspiration.

Some of the things I am going to say are tough to hear but I need to say them...if we find that Logan's life expectancy is short, Dr. K explained that we would want to decide how we would proceed. Meaning, would we do everything we could to prolong his life or change our focus to comfort care. The big intervention that would essentially stop his aspiration would be a tracheal diversion. This would be a reconstruction of his airway and would mean he would have a tracheostomy (an opening into his airway through his neck). Dr. K said the procedure itself is not what we would need to worry about. We would need to know that a procedure like this would have a huge effect on our lives. If we knew that his life expectancy would be longer we would know that intervening would improve his quality of life. If our time with Logan is short, Joel and I need to decide what we want to be his quality of life. I can't speak for my husband, but if our time with Logan is short, I want him to be happy and comfortable. I don't want machines to overtake our lives and take away from our possibly precious time. Obviously these are raw emotions and I am still processing it all, but it remains a possibility. These are all decisions that we are going to have to make at some point. I want to be educated about our options and also be able to take the time to dig deep into my beliefs to explore how I feel.

I hate to say it, but this last year of Logan's life has changed significantly. A year ago, he could breathe with more ease. He was always noisy but not to the point of being unable to protect his airway. Developmentally he has made gains and has had losses. Overall, his physical health has significantly declined. After every illness Logan does not fully bounce back. His health needs are constantly increasing.

I explained to Dr. K how upsetting it is to see him struggle to breathe every day. I told him that we need more options to care for him and I shared my ideas. I also talked to him about my worries for Logan's health going into cold and flu season. So we have a new plan of care. He has added atropine drops to decrease the saliva in his mouth. Logan is now on a low dose antibiotic. This definitely comes with risks...diarrhea, resistance, etc. He will remain on oxygen. He received the pneumococcal vaccine. The office is also going to see if insurance will cover the RSV vaccine and he will get a flu shot soon.

Dr. K also discussed the possibility of using a replogle tube at night. This is a small tube that is inserted into the nose and placed on intermittent suction. It is normally used in newborns with esophageal atresia (the esophagus does not fully develop). Dr. K thinks it may be helpful for Logan if used at night. His thought is that it would decrease the amount of saliva entering his lungs while he sleeps. I have attempted to research the replogle tube but can only find its use in the newborns with an esophageal defect. It seems to be a short term solution in those cases until surgery is performed. Also, Joel and I have discussed this at length and have decided to put this intervention on the back burner. We are concerned that this will cause discomfort, may possibily introduce infection, and
disrupt his sleep. 

I feel as though we have a good plan in place but live every day in fear that he will get sick and end up in the hospital. We talked about keeping him away from public places as much as possible. Dr. K says he has chronic bronchitis and that even a simple virus can exacerbate his lung problems and cause pneumonia. All the antibiotics and vaccines in the world will not ward off a virus. 

It really sucks living with the constant worry for his health. I hate to see him this way. I cried the entire way to work the other day. It came out of no where. I have to say that my steering wheel has caught a lot of tears over this last year and a half! This roller coaster ride has been quite a journey. I have learned so much from my miracle son. He has taught me to be a much kinder, patient, and understanding person.  I hope he knows how special he really is. 

I am so thankful to have Dr. K and his endless wisdom. The support he provides is amazing. He is always willing to answer my questions and he listens to what I say. He is also very attentive to Logan and never gives up on us! Thank you Dr. K. You make it easy to place our trust in you!