So let's see, where were we? Oh yes, we'd just seen Dr Wilson and started on the nutrition regimen. That is going well actually. Well, with the exception of the Beyond Organic water. He drank 1 bottle, I used 1 for his shakes and we have one left. I didn't think the taste was too bad but apparently he does. But who knows how his taste buds have changed through all the treatment etc.
Last Thursday we saw Dr Treptow (the surgeon.) He pulled the drain tube down about an inch and told me to do the same every 3-4 days. If it came out (shouldn't happen but if it does) just clip the suture and he would be drain tube less, a literal pain in the butt! Friday at infusion he came out of the bathroom and said the tube had "pulled out some." When we got home he was going to sit on the toilet put the tube was so long it was going to hang in the water. I was like "no way, there is bacteria in that" so I cut it off. Not realizing until he was finished that the tube had actually pulled all of the way out and what was left was about a 3 inch piece that was still stitched to his bottom. I had already called and talked to the nurse and she had a call in to Dr Treptow to call us to see if he wanted to put it back in or just clip the suture. I told Doug I was 99% sure he would just want us to clip the suture. And when 9pm came and went and no call that went to 100. It is nice for him to have that gone! We have another appointment with him on Monday.
So the daily infusions continue. We are on a personal level now with the staff at the infusion center.
They have the Invanz available but we have to wait daily for the pharmacy to mix the Daptomyacin.
The weekends are the same except you go thru the E.R. into the area where you go for outpatient surgery. At least he has a bed to lay in.
He's been experiencing a lot of muscle pain especially in his hands, arms and calves. One of the side effects of the Dapto is neuropathy. Yesterday I was making tuna salad and needed to open a new bottle of mayo. My right hand (aka the paw) has never been the same since I broke my wrist and with his muscle weakness, well, we were a pair I'll tell you! Fortunately I have one of those rubber "jar opener aids" and was able to get it that way. Needless to say he's not even able to pick up a piece of wood for the stove.
Fortunately Doug's blood draw is on Monday. On Tuesday we saw Dr Bandy (the infection doctor.) We told him about the neuropathy and he said, "ok, we're done with the Daptomyacin." I thought to myself, wow, just from what we said? But there was more to it. Much more. He jets out of the room pretty quick when he's finished talking so if you have a question you'd better be quick about it! I wanted a copy of the blood test so as I was waiting for the nurse in the hall to get a hard copy for me Dr Bandy came by and I told him what I was waiting for. He told me to go to the "MyMercy" page and they should be there. He said he'd had patients that have the results of their blood work when the come to their appointment. I told him the results weren't showing up for at least a week after the draw. He is a large man and wants you to hear what he has to say but isn't so patient to hear what you have to say. I am always respectful even when I feel like I'm not being heard so I didn't push it.
When I checked out the sweet receptionist gave me a flyer with a number highlighted on it. She said "I heard what he was telling you and here is a number to call for help with that." Isn't it just like God to already have my back thru this sweet lady? I stopped to thank her this morning but she had people waiting. I will definitely follow up with her. (We go past this clinic every day.)
After feeding the hubs lunch and filling the wood stove etc etc etc I checked to see if the results were in MyMercy. They were not. (Love the system by the way.) So I called the help line and here is the answer I got. "Some doctors view the results and think they are automatically released to the site after they view them. This is not the case, the doctor has to click in the "release" area before the results are sent to the site. If they don't they are held in a que and are not released for up to 17 days." So there you go. (No he didn't say that:) So I sent a message to Dr Bandy via the MyMercy site relaying what I'd been told. About 3 hours later the results were released. And boy howdy it was revealed to me why he'd stopped the Daptomyacin. Doug's CK level was WAAY high. Here is the definition of CK:
This test measures the amount of a protein called creatine kinase (CK) in your blood.
The muscle cells in your body need CK to function. Levels of can rise after a heart attack, skeletal muscle injury, strenuous exercise, or drinking too much alcohol, and from taking certain medications. If this test shows that your CK levels are high, you may have muscle or heart damage.
AND
If you are taking statin drugs and experience unusual muscle cramping and pain or muscle weakness, your doctor may also order a CK test. This is because statin drugs sometimes cause serious muscle injury and in very rare cases can even lead to a rapid, life-threatening muscle breakdown.
AND
Because levels of CK may rise if you have a thyroid problem or kidney failure, your doctor may also order tests to find out how well these organs are working.
http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=creatine_kinase_blood
See what you get for researching? Yepper, the truth. Well, he didn't lie, just didn't tell us everything.
The normal range for Creatine Kinase is 39 - 308 IU/L (international units per liter)
On 1/13 his CK level was 42.
On 1/20 his CK level was 8890.
NO WONDER HE HAS PAIN IN HIS MUSCLES!
Geesh, what next? Ok, scratch that. Deep breath. Moving on!
Mom and dad brought us supper last night which was soooo nice. Speaking my love language I'll tell ya!
We also hadn't received Doug's ostomy supplies that I'd ordered early last week. So I called on that as they said we would receive an email when the order was filled and we hadn't gotten one. First I verified the email address, which was wrong. Then she said they were needed payment on the portion the insurance wasn't going to pay. So I gave her payment info. Then I asked if that was the holdup? She said yes, and "didn't we receive an automated call?" Ummmm no. Another deep sigh. Hey, at least I'm getting oxygen to my brain right?
So they journey and pain continue. Muscle pain and pain in his abdomen. Dr Bandy ordered another CT scan to check to make sure the abscess was gone and filled (filling?) in. He also said it would be good for the appointment with Dr Treptow as he would want to see the results as well. So would we for that matter :)
Still in this fight and sooooo covet your prayers. God is in control!
Love you all,
Jan, Doug and Eric
No comments:
Post a Comment