There's a chair in the shower. . .

and O2 for power,
and rails that will help you hang oooonnnn.

One of the verses from Mike's CF song. If you haven't heard it go here.  Yes, it was a funny spin on CF but it came from real life experience. Mike was able to take a shower today. He said it was hard. He went off his oxygen and had to sit on the chair in the shower and rest.....soap in hair, sit and rest, rinse hair....rest. He said it is painful. His muscles ache from the lack of oxygen and being in bed. They will reassess him tomorrow to see if he can handle room air yet.

He doesn't know yet if his stay will be extended. Sometimes an extra few days on IVs can improve things and sometimes it doesn't really make a difference. Time will tell.

Mike is still having trouble talking on the phone for very long. He has to take his oxygen off to answer calls so this isn't a good idea. It makes him winded and cough more. He should be up for company late this week but we will keep you posted.

Here are a couple of pics I took on Friday.

This is the donate life mascot.
He (or she) was down in the cafeteria on Friday. Too cute! And please, do consider being a donor.

And these are some friends of Mike that came Friday. They didn't stay very long and they took the precautions and gowned up. Thank you!!

Thank you all for your continued prayers and support. Love, love, love.

Blessings to you!

4-13-2012 Update 2

Mike did PFTs this afternoon. FEV1 is 28% and FEF 25-75 is at 8%. It will take him a bit to recover from this but he is starting to be more awake and get crabby. Good signs! All tests are back. This is not life threatening. It may take him a while to get back to his baseline. We'll continue to pray he gets back up as high as he was before this infection.

Mike is in room D6/518 if you would like to send him a greeting or card. Thanks again for your support and prayers. I'll most likely be heading home tonight. Gotta get this guy to eat first. His favorite nurse Erin is here tonight so he will be in good hands.

Blessings to you.

Update - 4-13-2012

Mike is not sleeping well. He coughs almost constantly at night. His state of consciousness is about the same and he isn't taking many calls. We appreciate your thoughts and prayers.

They have not decreased his oxygen. His lips started to turn blue when he went off for a little bit (I went down to the cafeteria to get him something and came back and he had it off) the Doc walked in and saw his lips were turning blue and put his oxygen back on and told him (and the nurses) DO NOT TAKE IT OFF!

The good news is his port is working. They are giving him some potassium today because that was low also. They are hitting him with three antibiotics as his white blood count is elevated. No signs of pneumonia, just plugging on the x-ray.

Mike is in pain and dosing on and off. We spoke with the Doc and she said he waited too long to come in this time. She said another day and he would have been taken to ICU. Lesson learned. There is no perfect scenario with CF  -  no routine. Things moved very quickly this time. We will keep you posted. That's all for now.

Blessings to you.

Highs and Lows

One thing is for sure. When you have reached the bottom of the valley the peaks look so high and from the top of the peak the valley looks so deep - it is scary to look down.....

It has been a long time since we have posted. We have seen some peaks and right now Mike is in a valley.

Just a few weeks ago we were celebrating one of the peaks. Mike's PFTs were higher than they have been for a long time - 56%! He gained weight and was at 138 lbs. Mike was out dancing with Julie again. His doctor put him on a drug to help his appetite and he was working really hard at gaining weight. Ensure plus has been a blessing.

Mike did a fund raiser two weeks ago. He wore a tux and looked so sharp. He wasn't feeling the best but he did a great job. He even made the newspaper. Last Saturday he told me his chest hurt pretty badly. He rested some during the day and then went with Julie to see a passion play at a local church. Easter Sunday he was pretty wiped out. He didn't make it to the Easter celebration with the Van Deurzen's. He started using his oxygen pretty much non stop.

By Tuesday he was coughing a lot and not sleeping much at all. I thought he should go to the hospital but he didn't want to go because his cell phone was broken. I took him to Sprint to get his cell phone fixed after work. I asked if he wanted me to take him in on Wed and he said no Aunt Cathy was taking him on Thursday. It was Grandma Van Deurzen's birthday on Wed and he didn't want to go in.

Cathy picked him up at the house and carried his bag and guitar. She had to get a wheel chair for him. When Cathy got him to Clinic today he was desatting. His O2 level was at 74% when he got here. He kept falling asleep and couldn't put sentences together. He has lost weight and weighs 122 lbs. He was barely coherrent. His breathing was shallow and labored. His respirations were 34-36 per minute and his heart rate was up. Like Cathy said that is like running a marathon. They did a blood gas and his CO2 was at 57 -- 35 is normal. The doctor (his favorite - Brooke is back from maternity leave) put him in a wheel chair and brought him up to the floor.

At the time of this writing he is on 5.5 liters of oxygen (was at 6) and his oxygen level is holding above 95%. He talked to his dad a little while ago and seemed more oriented. The nurse was just in and said he looks better to her too. They were going to hang some magnesium because that level was really low but his port isn't working. Cathy said it took two tries to get it going when they first got here. They were able to get one round of antibiotics in before it quit. We are waiting for pharmacy to send up the drano flush to see if that helps.

Right now he seems stable. Not a ton better but at least not getting worse. I will keep you all posted. Thank you Aunt Cathy for bringing him down and for totally understanding Mike. Not many people "get" him but she does and that is a comfort for Mike.

Blessings to you.