Wednesday, May 7, 2014

What More Can I Do?

Robert has battled bronchitis three times since January. He was hospitalized three times last year for pneumonia. He has such constant congestion that even the Costco packages of tissues aren’t enough to last very long. When the congestion gets terrible and it turns into bronchitis or pneumonia, we resort to antibiotics.
Taz likes to help -
whether Robert likes it or not! 

I am trying to keep it under control so we don’t have to use them – goodness knows, he is already resistant to many of them and I don’t need to speed his resistance to the rest of them.

It is a balancing act but once he starts with a fever, continued congestion, slowness and drowsiness I know what is coming.  What I am trying to avoid (aside from over-use of antibiotics) is the bronchitis turning into pneumonia resulting in a hospital stay.

Call me self-serving but it’s a pain when Robert is in the hospital. He rapidly declines, not only from the pneumonia but from the actual stay in the hospital. It takes weeks – sometimes months – to get him back to baseline.  Sometimes there’s even a permanent shift in his skill level, balance and independence. 

Lying in bed for long periods of time make his legs weak and while the physical therapy usually prescribed helps, it feels like we are starting from scratch over and over and over. 

The antibiotics themselves wreak havoc on his digestive system which means he has bowel incontinence for months after a hospital stay.  We load him up on probiotic juices and yogurts but after all those strong antibiotics it is just a matter of time before he is able to have some control again.

Yeah, so call me selfish but I am not at all keen on letting his congestion turn into pneumonia.

Over the last several weeks we have been managing a new medication so it has been difficult to tell if some of the things going on with Robert are a result of the medication or if something worse is working on him. 

For weeks his congestion has been so awful at night that he throws up from it.  After the first accident I realized having a bowl bedside could help with the 2:00 a.m. clean-ups.  Sure, he still calls me after throwing up but there’s a much smaller mess to clean up.

I wrote to Robert’s primary doctor asking how else we could manage his congestion. The congestion just sits in his chest and it is impossible for him to cough on demand.  I explained to the doctor what we are doing so far:

Increasing his liquids to thin out the mucus;

Using a neti-pot to drain his sinuses;

Giving him Coricidan (a decongestant approved by his neurologist);

Daily doses of Musinex and AllegraD;

Nasal spray;

Wedges to prop up his head and for his feet; (he practically sleeps like a pretzel!);

Daily vitals check; (watching for a high pulse and low blood ox and low blood pressure);

Checking the color of the mucus when he does cough up stuff; (Not a fun job but I am very happy when I don’t see any yellow or green in his throw-up/spit up bowl. Although, imagine my initial panic when I saw brown but then remembered the Thin Mints I let him have an hour earlier.);

I even started giving him salsa and chips for a snack so it would make his nose run!

Richard and I also changed Robert’s bedtime routine so he is in bed earlier and, hopefully, sleeping more.

His doctor replied recommending we use a humidifier and an air purifier.  We use the humidifier; I just forgot to mention it.  As for the air purifier – I knew I recognized that thing in the corner gathering dust.  I completely forgot we had it and for some reason stopped using it.

Okay, it’s back on.

Congestion is the same.

Day Program had reported Robert having issues walking and with balance but I chalked it up to the new medication. 

I sent a similar message to his pulmonary doctor only by this time, his pulse was slightly elevated and his blood pressure was a little on the low side. 

What more can I do to manage his congestion?

Before getting a reply, it was the middle of the night Friday and Robert woke up at 2:00 a.m.  Taz and I went downstairs (Taz always goes with me when Robert wakes up in the middle of the night).  Robert thought he had to go to the bathroom.  I got him to the bathroom before realizing he felt warm but a fever didn’t register on the thermometer. 

I cleaned him up and gave him two Tylenol anyway.

By morning, Robert was extremely sleepy but that wasn’t too unusual for a Saturday. I let him sleep but took his vitals. Still no fever but when I lifted his arm to put on the blood pressure cuff, I noticed his back was soaked from sweat. He was more than just sleepy – he was having difficulty keeping his eyes open.

The report from Day Program about him having trouble walking was looking more and more like the onset of his bronchitis/pneumonia.

Oh crap.

I gave him two more Tylenol, finished with the vitals and called the after-hours number for the primary doctor.  I was not going to the hospital if I could help it!

The PCP was very nice but she was being overly cautious and wouldn’t prescribe antibiotics without him being seen.  She advised me to take him to the ER.

Ugh.  I don’t want to hurt your feelings but I think I am going to call his pulmonary doctor to see what he says.  She audibly sighed which sounded to me like relief. Yes, good idea. Call the pulmonary doctor, she said.

So I did.

I explained to the pulmonary doctor on call what was going on; Robert’s history of pneumonia and bronchitis and hospitalizations. I gave her a run-down of his vitals.

She prescribed antibiotics.

She told me if his blood pressure got below 80 or 90 (the systolic number), to take him to the hospital. 

I started him on the Z-Pak (a very strong, five day dose of antibiotics). Robert slept all day long and I only woke him to check his meds every hour and to give him his medications.

I told Richard I wished had an IV pole to hang a bag of antibiotics.

Robert’s blood pressure went down to 93/65 – oh boy, that was close. I think I willed his blood pressure to rise right about then.

At 5:00 p.m., I made him get up to go to the bathroom so I could check his sheets and change him if needed. At first he thought it was New Year’s.  Then asked if it was Christmas.

Nope, just Saturday.  He didn’t seem too disappointed.

He also thought it was morning but I let that go. It probably didn’t help that I gave him scrambled eggs and hash browns for something to eat. 

Thankfully, the antibiotics did the trick. He still had a nasty cough but seemed more alert and his vitals were getting better. He has slept through the night the last few nights but his vitals were starting to creep toward the “getting sick” side again today. 

My fingers are crossed but they are ready to dial the pulmonary doctor again for advice or 911 if a hospital visit and stronger antibiotics are needed. 

I wonder how quickly I can learn how to work an IV?


Unknown said...

Bet you could work an IV in no time! This being on "high alert" is exhausting. I emphasize with your worries of hospitalization, even just a few days can have such dire consequences for someone with mobility issues. All the kings horses and all the king s men could not do a better job of caring or advocating than you. Know that you, Robert and the whole family are always in my heart and prayers.

Kathy Lowrey said...

Oh dear :(
I agree with everything Pegi said.
I can't think of anything you aren't already doing or that a hosp visit would do.
Home has a therapeutic benefit.

Always praying for you guys.
{{{BIG HUGS}}}