Processing Pulmonary Health

Robert has been healthy – I mean, as healthy as he’s been in a long time and as healthy as someone who sees two Neurologists (an Epileptologist for his epilepsy and a neurologist specializing in movement disorders), an Otolaryngologist (his swallow doctor) and a Pulmonologist (his lung doctor) can be.

Taking advantage of a good run of good health:
Enjoying being on a River Cruise!

(You’re still knocking on wood, right?).

Robert’s health is definitely a house of cards but we have been very fortunate of late and I am extremely grateful. I am also a little wary because I know this can’t last forever but I try not to worry about the future. Not too much, anyway.

We usually see Robert’s pulmonologist two or three times a year. A couple of appointments ago, he was chosen to be in a research study for bronchiectasis. Robert is always up to help others and it only involves giving blood every few months which he is happy to do. He is not easy to get blood from but it doesn’t hurt him so he signed up.

I have been very happy with his pulmonary team over the last few years. His doctors have changed since Robert is seen at the local teaching hospital but they have all been very earnest, kind and good to Robert. The staff, particularly the nurse practitioner Lana, has been the mainstay of the practice and we absolutely adore her. She single-handedly helped Richard and I keep Robert out of the hospital a year and a half ago when he had pneumonia. We treated him at home and I talked to Lana several times a day, giving her Robert’s vitals, reporting on his mucus color (that’s always a fun job), and talking through his symptoms.

Lana was a lifesaver. She got us a nebulizer, gave us tips on how to clear the mucus, got the script for the antibiotics ordered and checked on us constantly. Without her, Robert would have been hospitalized which always results in a decline and an extra-long recovery time.

Lana also has epilepsy which she developed as an adult so she was definitely meant to be a part of Robert’s care team. (An interview with Lana will be featured in the Robert’s Sister interviews for Epilepsy Awareness Month in November!)

At Robert’s last appointment he saw his regular doctor and then had a new supervising doctor see him after the initial appointment. The first doctor and I talked about Robert’s increased coughing episodes and his choking and vomiting episodes that happen occasionally at night.  I was also concerned about winter coming (yes, I sound like Jon Snow from Game of Thrones) so the doctor suggested we come back in three months just to be sure everything was staying stable.

When the supervising doctor came in, he asked what I am doing to keep Robert from aspirating. Robert’s pneumonias stem from aspirations, usually during seizures. I listed everything we do: regular use of the Acapella, inhaler when needed, on three different kinds of meds to control his congestion and  following the swallow doctor’s orders of small bites with meals and taking only two meds at a time (instead of a handful as Robert thinks he can). I neglected to mention that I also brush his teeth regularly, use the brushes to get between teeth (flossing his teeth is too difficult for me) and take him to get his teeth cleaned four times a year.

I am absolutely convinced the reason Robert’s pneumonia episodes have decreased is because of the attention to his oral health. It is really amazing!

I told the doctor that, frankly, there was nothing I could do to prevent Robert from aspirating as it usually occurs during his seizures. I explained we are working with his neurologist in order to get seizure control but it just is not happening right now.

The doctor looked at me and said, well, let’s see Robert in a year.

Um, what?! Was it something I said?

What happened to every three to six months? What if he gets sick? What happened to my lifeline?

I admit I was a little panic-stricken.

I felt like we were getting kicked out for some reason. Did I answer your question incorrectly? Am I not doing enough for his pulmonary health? I don’t know what else I can do!

There’s something about the thought of losing a lifeline that can create absolute havoc for me. I like lifelines and safety nets and back up plans. Multiples of all of them if possible.

As we left, the doctor said we could always call if there is an issue. I thought he was just trying to make me feel better.

Hmmpf. I left feeling I was alone in dealing with any future coughing, choking, pneumonia or any other pulmonary issues.

I realize I was being a bit over-dramatic, which thankfully, was happening just inside my head.

I emailed Lana and told her I was a little concerned about Robert not being seen for a year. She reassured me that the doctor meant well and actually, I should “take that as him wanting to take pressure off you.”

Wow. A doctor who is concerned about me, the caregiver? That hadn’t occurred to me.

He did say I could call if there was a problem. Lana said the same thing.

I realized I still have my lifeline. Not only that but I have fewer times in a year that I have to rearrange my work schedule and Robert’s Day Program schedule.

I can definitely see the upside to this idea!

It has been a few weeks since the appointment and nothing dire has happened. (Humor me: knock on wood.)  I have Lana’s email, I have the online messaging service for all of Robert’s doctors and I know their phone number if things start to go south.

Winter is still coming but I feel like I have my lifeline again.