Tuesday, July 9, 2013

Robert Update: Define “Decline”

Robert had a follow up visit with a stand-in GP the other day.  This was to give us the results of the pulmonary testing Robert had done not too long ago which had been ordered because he’s been hospitalized twice in the last 11 months for pneumonia.

His regular doctor is terrific and she wants to get to the bottom of his seeming susceptibility to pneumonia.

I was hesitant to see the new GP only because you never know what you might get with a new doctor.  This new doctor was filling in for Robert’s wonderful regular doctor – who is now on medical leave herself!  

Yep, even doctors get sick.  In fact, the last time Robert saw her (when she gave us the referral for the pulmonary testing), we were swapping emergency room stories.  She had recently been in the ER and even she – A DOCTOR – had trouble getting the staff to listen to her.  She said the ER is so chaotic that the staff just wants you to “sit in a corner and be quiet.”  (The doctor actually said that!)

I love Robert’s GP – she gets it. She’s awesome with Robert, personally called me when he was in the hospital and one time even gave me a tip for an online shoe store – now that’s a doctor I can love!

I would have preferred to see her for Robert’s follow up but she is out for another month and I really want to get to the bottom of Robert’s coughing and congestion issues.

We lucked out – the replacement GP was another fantastic doctor.  He listened to my theory about acid reflux and GERD possibly being related to Robert’s coughing and lung issues, he told me what he was thinking about what might be wrong and how we can figure it out for sure and he was extremely kind to Robert. 

He even laughed at Robert’s jokes!

I have to say how grateful I am to have such a supportive medical team for Robert. Robert’s medical expenses are covered through Medicare and Medi-Cal (the California program for Medicaid) and one might expect a reduced level of care because he doesn’t have top-notch private insurance.

Nothing could be further from the truth for him.

We are very fortunate.

The new GP agreed with the acid reflux/GERD theory and added a medication to Robert’s growing list of daily pills (Robert is doing his part to keep the pharmacy in business!). The doctor also gave us a referral to a GI specialist and thought they may want to do a colonoscopy and an endoscopy – scopes on both ends of the GI tract. 

I’m assuming not at the same time. . .

The doctor backed off of the pulmonary specialist referral but decided to do a six minute walking test, just to be sure. 

Well, that didn’t last long because Robert’s blood oxygen level dipped to 84 in less than 60 seconds of walking (it should always be over 90 at the minimum). (Not really surprising to me since I know he starts to breath heavily when we are walking at the mall or going to Target.)

The doctor decided Robert needed the pulmonary referral after all as well as oxygen whenever he is “active” – definitely a relative term since I wouldn’t really use “active” to describe Robert.

In a span of 30 minutes (that’s counting the bathroom break Robert needed), we got a referral to a GI with the possibility of at least two tests coming up, a referral to a pulmonary specialist (with more tests to do, no doubt), an order for oxygen and new medication. Oh yeah, and more blood work to check for a nasty stomach bacteria, vitamin deficiencies and a host of other possible issues. 

On top of this, I realized I had made a mistake with Robert’s medications!  Yikes! For some reason, I recently added an additional Zonegran to his regimen in the morning. The only explanation I can come up with is his neurologist added a third one in the morning last fall and then a fourth one in the evening after Robert’s recent seven minute seizure and I got it in my head that he needed four both in the morning and the evening.

Ugh! I was sick to my stomach when I realized I – the keeper of the medications and holder of high expectations of myself – made a medication mistake.

While I’m still kicking myself for it, I need to move on.

On the plus side, since Robert was taking 27 pills per day (with my error), the extra prescription doesn’t really add anything to his daily count – correcting my error and adding the new prescription is a wash as far as the number of pills per day. 

(That’s called New Math . . .)

With more doctors added to Robert’s medical team, an order for oxygen and a new prescription, does this mean a decline for Robert?

I have noticed he has increased short-term memory problems, his right leg drags more and his coughing fits have increased and been more intense (often times causing him to vomit). Robert’s incontinence seems to be getting worse (he sometimes doesn’t realize when he’s going to the bathroom, even when he’s on the toilet which is new).

Recently, I asked Other Brother if he noticed a decline. Other Brother doesn’t see Robert as often as I do so thought he would be a good judge of seeing any real change.

He told me he thought Robert seemed about the same. “Perhaps a bit slower with the walker” but “pretty alert.”

I couldn’t understand how Other Brother couldn’t see what seems to me to be an obvious decline but then it hit me.  The last time Other Brother saw Robert before we visited him recently, was when Robert was in the ICU hooked to IV lines. 

No wonder!  Heck, compared to that, Robert is on the upswing!

What I realized in my quest to define and see “decline” is that it is important to me because I am trying to predict the future. If there is a decline, will Robert be hospitalized again soon because of pneumonia? Will he eventually need a wheelchair because he can’t walk around without falling or trouble breathing? Will we need to change the type of protective briefs he wears because of the accidents? How much longer does Robert really have? How long can we care for Robert at home if his needs increase so quickly? 

Yes, I sometimes wish I were psychic instead of neurotic.

Since I am not, I will take a cue from Robert and live in the moment. (Of course, he’s been reliving moments lately telling us “Good Morning” several times and each time as if it’s the first time he’s seen us.) 

No matter - defining decline can’t be my focus.  Keeping Robert as healthy as possible (even if it means several new appointments) is what is important. Keeping Robert’s medications straight is what is important. Arranging as much help as possible so Robert can continue to live with us is important.

Oh yeah, and visiting that online shoe store is important. . .

Phew! At least I have my priorities straight.


Melinda Hatano said...

I continue to be amazed by what you do for your brother. You are special!!!

Anonymous said...

Trish, you are doing great! Medication mistakes sadly happen. We've started getting the pharmacy to bubble/prepackage Marc's doses so that we don't make mistakes like that. We've had a few of our own.

As for the GI tests, both can be done at the same time since they will probably have to put him completely out for both. I had them done that way and it really wasn't all that bad. Just a few days of discomfort.

You really are doing an amazing job and I am interested to know if the GERD/Reflux meds work. Those conditions can also cause shortness of breath, too. So, it may be an easy solution for that.

Is it possible that maybe overall, Robert just needs to be a little more active? If he isn't active then I can see why he might get winded quickly.

Hoping all the best for you, all. I'm sure that whatever is going on they will be able to find it and help work towards making Robert better :)

Trish Hughes Kreis said...

Thanks so much, Melinda! The support I get from people following our story is really inspiring.

Trish Hughes Kreis said...

Running w/scissors, So good to know the tests can be combined. Sounds like a horrible ordeal but at least it's efficient. :-) Robert definitely needs to be more active and lose a few pounds. I'm working on all that with him but it's slow going. I'll keep you posted about the new meds. It seems to work for a friend of mine so we'll see if it helps Robert. Thanks for stopping by! <3