Thursday, Sept. 30

Sorry I haven't been blogging as much. Frustration has hit a fever pitch with me this past couple of weeks with the folks at ITA. And, frankly, I've been too stressed out to even blog. We've had so many issues with Mike's catheter. They had to repair it yet again today because the repair last week wasn't done properly and the lumen is seeping out blood. ITA was short staffed today because of some symposium going on, so there was no one there on-site who has done a catheter repair before. And the gal who did the repair last time was off today.

So, here we were--stuck with a nurse who is inexperienced with catheter repairs. The nurse actually said to us that Mike was going to be her 'guinea pig'. Obviously, this set me off. After all, this is the second catheter line installed in Mike and the third time his catheter had to be repaired. I asked that someone else perform the repair, someone who has actually done it. Nope. We are stuck with her. The only other person who 'is' experienced is not certified to do it. Every time they repair the catheter it opens Mike up to infection. I pray, pray, pray that this one will hold up.

The RN today told me that they have an issue with me because I raised concerns about the competency of nurses doing catheter repairs. I don't care if they have issues with me. I'm trying to be an advocate for my husband. I'm going to continue to ask my questions and speak up if I feel that something isn't right. Today is not a good day.

I'm simply, absolutely, completely, positively exhausted. The uncertainty is the most exhausting part of this process. I'm mustering every fiber of my being and trying to stay upbeat and positive, but it's been difficult.

Today's blood counts...

What a difference a couple days make. On Friday, Mike's labs (for the most part) were looking good. Today, the counts that we want to see going up are down.

WBC: 3.9 (normal 4.0 - 11)
Hemoglobin: 9.1 (13.5 -17.7)
Hematocrit: 25.3 (40-52)
Platelets: 142 (150-400)

Tomorrow, we're headed back to the cancer center where Mike will get a blood transfusion since his hematocrit count dropped below 28.

The nurses say not to worry that his counts are trending downward, which is easier said than done!

Day +57

Mike always says, "No news is good news". This past week, things have been going pretty steady, so we haven't had much to update. Mike's lab results on Friday, 9/10 was:

WBC: 5.1 (normal range 4.0-11.0)
Hemoglobin: 10.1 (13.5 - 17.7)
Hematocrit: 28.4 (40.0-52.0)
Platelet: 158 (150-400)
Magnesium: 1.2 (1.8-2.2)

There was a new comment/notation on his blood lab results which reads, "Cold agglutinins present. Specimen warmed". We asked his nurse what this meant and she had no idea and told us not to worry. She said that if it were of any concern, the docs would let us know about it. We also asked a second nurse, but she, too, could not explain what it was but said that this was something common that they see on lab results. I'll need to track down a doctor ask him/her about this so that I can rest assured that this is, indeed, not an issue.

Mike's Hemoglobin and Hematocrit levels are still on the low side. If his Hematocrit level drops below 28.0, he'll require a blood transfusion. His magnesium level continues to be low even though he gets mag infusions at the hospital as well as taking mag supplements at home. We also try and eat foods that are rich in magnesium.

Why is magnesium so important? Magnesium is an important electolyte needed for proper muscle, nerve, and enzyme function. It also helps regulate energy production in cells and is needed to move other electrolytes (potassium and sodium) into and out of cells.

Overall, Mike's feeling good. There's minor stuff going on (recurring bouts of diarreah, fatigue, and post nasal drip which causes occasional sniffles and coughing), but nothing major that we are aware of. The nurses say the diarreah is due to the intake of magnesium tablets and the fatigue is due to the low red blood cells.

Day +48

On Wednesday, Mike had another blood transfusion due to low hematocrit and hemoglobin levels. The effects Mike's been feeling of having red blood cell (RBC) counts include fatigue and lightheadedness. We had lab work done today at the hospital and the results showed that the the transfusion did little to increase his RBC counts. In time, these counts should get back to normal ranges on its own. Until then, he'll need to get blood transfusions. Mike also got another magnesium infusion today as well.

WBC= 5.3 (normal 4.0-11.0)
Hemoglobin=10.4 (normal 13.5-17.7)
Hematocrit=29.4 (normal 40.0-52.0)

Things are continuing to move forward and we are nearly half way through our 100 day mark (Phase One).

Thanks for your calls, emails and letters. It keeps us connected to the 'outside' world!