Running With Hope (Hebrews 12:1-3): ENT and Test Updates

PICC finally inserted after two hours, but it's purple! :)

Hey everyone...wow has today flown by and been crazy busy for me here! Started off feeling good, then got super dizzy and nauseous from my infected BAHA so I gave in and took Fenergan (however you spell it) a powerful anti-nausea med, but it also knocks you out making you super sleepy. A friend, Kate Fuller, who I met when she did a workshop on suffering at one of the first Women 4 Truth conferences I went to stopped by with a super sweet gift bag full of orange and purple things including a purple butterfly thingy that is brightening up my room! :) And another cute scarf and even a purple and orange sucker.

She left and then the lady came to insert my PICC line (which is a catheter that is inserted in your arm and goes to the artery right above your heart and can stay in a lot longer than a normal IV can...months if you need it). Turns out it was someone who had been my Respiratory Therapist (RT) years ago (like way back in 2008) when I was first hospitalized here at Banner. She remembered me so we struck up a conversation and had fun catching up while she was prepping everything...then the fun began. Once your prepped, it generally takes about 20 minutes total to insert the guide wire, take pictures to make sure its in the right place, then insert the line and take the wire out...well the vein she chose that has been used before has a branch that goes up my neck instead of down towards my heart, so it took forever and she tried a different wire and I prayed and we moved my chin and neck and head and arm in a million different combinations trying to get it to go the right way. Two hours later, it finally went the right way, but boy was my hand numb! My joints were extra stiff and sore as it went two hours past my pain med time and I was absolutely starving since the nausea was gone and I had hardly eaten anything.

Next, the pulmonary people came in to do my Pulmonary Function Tests (PFT's). I took a video and pictures of that. The goal is to find out how good your lung function is. Like I said in my previous post, my FEV1 was 74%. Today, even though I feel much worse than when I did those tests a month and a half ago, my FEV1 was at 79%. Then I did my Albuterol nebulizer and did post treatment PFT's and my number went down to 78% and I had the sharp stabbing pain in my left side and had to wait a couple minutes in between the second and third test as I couldn't catch my breath. The tech said that sometimes even though the number appears to be better there are other things going on.

Then the ENT doctor came in with a Physician Assistance (PA) student (cause I'm always a good case for student's to learn since I'm an "interesting patient"...good for them, not so good for me!). He actually lives in Maine and practiced in Boston and has seen people with PCD before as well! He's semi retired and "does this just enough to remind myself why I retired in the first place...I wanted to practice medicine, not insurance." AND he's a Christian...he saw my "Comfort from Romans" devotional by Elyse Fitzpatrick (which is great by the way!) and started talking to me about the Bible and his reading plan to read through the Bible every year. He is very knowledgeable and wants to get me to a good doc that will follow me outside well like Dr. Cohen did. I'm so thankful that God has surrounded me with multiple new doctor's that have actually seen people with PCD before! I'm going to get a CT scan of my sinuses and he took a picture of my BAHA infection and will see me daily and compare and see what we can do.

Last night I saw the ID (Infectious Disease) doctor again and he was excited that I was tolerating the Doxycycline. He said something about my positive attitude and I replied with something along the lines of "Jesus is my hope and one Day I will have a heavenly body that doesn't wear out" to which he replied, "I completely agree." I asked if he was a Christian and he said he was a Catholic Christian. I asked if he would see me outpatient and he said he doesn't have the staff to monitor people so he only takes referrals from Pulmonary (lung) doctors, but he would be happy to take me if they referred me.

Jord and I are so incredibly grateful for all the love and support and prayers in this time. It is challenging, but it is also neat to see how we have both grown from years past and to point to Christ's refining work in us. :) Someone gave Jordan a $50 gift card to QuickTrip...this is so helpful as we are not only accruing extra medical bills right now, but gas for Jord to come visit me and little things like me not being home to cook means Jordan is buying lunch out. Kerstin is cooking some for Jordan and helping him take care of the dogs, but all those little things add up. We are thankful God always provides and has already provided for us in so many ways...most of all providing the way of Salvation through Jesus so that I know beyond a shadow of a doubt that my suffering is not in vain.

I think that's the important stuff...I'll leave you with a wonderful music video by Joni Eareckson Tada singing a song called "Alone yet not Alone." A video I have on repeat a lot right now. :)

Alone yet not Alone