Getting admitted this week.

Hey everyone,

I just wanted to let you know that I will be getting admitted the day after Christmas.  I'm very thankful for my GI dr.---he's working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly!  I'm not doing very well.  The pro-motility drug I've been taking hasn't helped at all, and it's getting harder to tolerate oral intake.  All my back muscles have been getting weaker and forming tight, painful knots to compensate---my physical therapist said it's because my muscles aren't receiving enough nutrition.  I've had to sleep past 2 pm every day now because I've been so tired.  All this and more is going on, and yet, I look so normal on the outside!

On top of all that, I still cough and gag all day and night.  We wonder if my secretions are going down the wrong way and ending up in my lungs.  I got the overnight oxygen testing completed last week, but we won't get results at the moment because my sleep dr. is out of town these last two weeks of December.

We're not sure how long I'll be admitted.  But I'll keep you posted!  Everything is up in the air regarding how long I'll be on TPN (IV nutrition), etc.

I hope all of you have a blessed Christmas!  I'm so thankful for you and your steadfast prayers.

P.S.  I thought this was so neat!  Last week, CNN wrote an article, and here is part of what they said: "We know parents whose children are in remission from cancer and others whose children have mitochondrial disease. Their dream present would be an end to childhood disease. Give to their causes if your family is lucky enough to be untouched by serious illness."

More tests and referrals.

Hi everyone,

We thought this week would have been my scheduled admission to the hospital since I haven't tolerated glutamine, but we're trying one last thing to re-mobilize my small intestine.  My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from being on IV nutrition).

I'm to take an antibiotic at a low dose for 10 days---this specific antibiotic can help the motility of the small intestine.  It doesn't benefit everyone, but he just wants to exhaust all options.  If I don't notice anything, then the plan is to get admitted to do a tube feeds trial and/or TPN (but it's always possible he may think of another option..).  I'm still losing weight and feeling bad, so 10 days seems so long. :(  I just need to keep waiting on the Lord.  I know His timing is perfect.

Still gagging and coughing, too, especially at night.  It wakes me up from sleeping. :(  Very thankful for my sleep dr.  He even emails me back on the weekends or late at night (btw, he made Portland Monthly's Top Doctors list for 2015 again! :)  He will be referring me to Pulmonology and also ordered overnight oxygen testing which will be hooked to my CPAP and done this week.

Today I saw my physical medicine specialist because I've been dealing with something called "foot drop" (can be seen with many neurological disorders).  It makes me trip when I walk around in our house.  He ordered an ankle-foot brace which is similar to the kinesio tape that my physical therapist used on me in the past.  It helped a lot, and I look forward to using the AFO brace!

My dr. also referred me to his colleague who is a foot and ankle surgeon.  Not planning to have foot surgery, but I'm not sure if the lymphangioma in the bottom of my foot (I had it surgically removed in 2010) grew back because the "bump" looks bigger to me and hurts a lot.  Dr. C isn't sure what type of MRI would be good to order for this specific problem, so he is referring me.  Lots of appointments in the future! :/

Worsening problems.

Hey friends,

I'd appreciate your continued prayers!  My small intestine is in bad shape.  Still can't tolerate j-tube feeds or solid food orally.  And I'm now getting distended with just liquids... :(  The dysmotility in my small intestine has gotten so much worse.  Mitochondrial disease is horrible!  I'm being followed very closely by my GI dr.  We've been trying a lot of different things, but none have been helping.  He wants to exhaust all other options before we move on to TPN (total parenteral IV nutrition) which is always a last resort because it comes with many risks and complications, including sepsis (blood infections).

I'm to try an amino acid called glutamine for 4 days to see if it will help the mitochondria in my GI tract.  And we're also trying another tube feeds formula since the elemental one wasn't tolerated well last week.

If these last things don't help, then we're moving on to TPN.  I'll have to get a central line placed and be admitted for the start of it for monitoring, daily lab work, and hourly blood sugar checks.

I'm so thankful for my GI specialist!  He's even trying to get in touch with my mito specialist in San Diego.

Today I saw my pain dr.'s colleague, and she is so sweet! :)  I'm so glad she can keep in touch with him.  The whole pain center misses him a lot!  If I have to start TPN, I'll be seeing the inpatient pain service at OHSU to receive ketamine infusions for CRPS pain control.  The CRPS has been flaring up because I'm not getting enough nutrition.  I'm also dealing with daily headaches and low blood pressure again from lack of food..

On top of all this, two weeks ago I started dealing with forceful coughing bouts to the point that I gag and retch. :/  I'm not sick, though.  We're not sure if something lung-related is going on now.  See how bad mito is? :(  I emailed my sleep dr. today to see if he can refer me to pulmonology.

Next week, I will be getting my j-tube changed yet again to a different-sized mic-key button.  And I also have a follow-up with cardiology to go over the holter monitor results.

I continue to press on---the Lord's got this! :)  And like always, He carries me through the roughest of times.