I have been trying got make a little time to update this since Friday and I finally got a quite minute! I’m sure most have seen the news on FB and Twitter but I wanted to give a little accounting of what happened on Friday . I’m trying hard to document as much of this process as I can so here goes.
After Maddy’s two days of tests the doctors reviewed her case for transplant and denied her. They still had some questions they needed answered from other doctors. So Maddy needed an allergy consult and a GYN consult. She also needed her albumen (a protein in her blood) and weight to go up. Because of these things they said no to putting her on the list at that time.
Between then and now Maddy has been working really hard to put weight on. Lots of eating, which is very hard for her because she can’t breathe, and extra protein added to her diet. We also had the appointment with the allergist but were still waiting on the GYN to get back to her and set an appointment.
Friday started out very rough. She was down 2kg when they weighed her. We had the nice, and smart, nutritionist meeting with us that morning. She went through everything Maddy was doing and agreed that she was working as hard as she could. However Maddy over heard the nutritionist talking to the CF coordinator saying she didn’t believe Maddy was always taking her enzymes or eating as much as she said. That really bummed Maddy out. But they said the albumen numbers from that mornings blood work is what the doctor was going to really look at.
Then Maddy went to do her PFT’s. When she came back she said her numbers were up. Which excited her very much. However she was looking at the wrong numbers. I have noticed she seems a little more perky since she has been home with us. When Sue came in she was scared by Maddy’s numbers. Her overall lung function is down to 13% and her total volume is about a half liter. Everyone started asking Maddy how long she has been feeling bad and Maddy’s answer is “I always feel bad”. She said she had actually been feeling a little better lately.
Doctor Haddad seemed very concerned. He took Maddy for a walk with an O2 sat meter. Then he spent the next hour coming in and out checking things and asking the nurses and lung transplant coordinator things. He called the GYN people and basically told them to send someone over to get this stupid consult that was holding everything up done. For the next three hours or so we sat around waiting for them to get there. We also had to wait on the Chaplin department to bring us an Advanced Directive form. This has to be done so that if anything happens I can make the decisions for Maddy. We finally got all the consults done and papers signed by 2:00, we got there at 8:30 by the way. Dr. Haddad told us he would be calling an emergency meeting of the transplant team and presenting Maddy again that day. Sue said not to worry if we didn’t hear from them before Tuesday because she didn’t know what time they would meet and we were going into a ling weekend.
We were very excited and hopeful. But also tired and hungry. We had not eaten since breakfast at 7:30 so we headed right to Subway. Before we could get there Maddy’s phone rang, it was Kim, the transplant coordinator, telling her she needed to come back for another test. Kim said Dr. Haddad was in the meeting with the transplant teem and pointing at a piece of paper motioning for Km to call Maddy and get her back. Kim didn’t know what test she needed but she had to get back right then. So we turned around. They wanted to repeat the 6 minute walk to see if Maddy needed oxygen at home. We have been trying to get her oxygen at home for a few months now because every time she has a coughing fit she can’t catch her breath and her sats go down to 80%, which is very low! So they checked her sats to start the test and she was too low to walk. They had to put her on 1 liter of oxygen and have her pull the tank behind her just to be able to do the test. She still failed, which is good, so they ordered oxygen for home.
It was tough but they were able to come through with a home medical company and get us O2 that evening. Oh yeah, they let us know before she started the test that she had been approved for the transplant! We got out of there about 4:15 and came home to wait for the oxygen to get here. I had to go into work that night but it was worth it.
Now we wait. Maddy is much better with the oxygen. We even went out to Curtis Hixon Park and had a picnic last night. It was very nice and when we got home Maddy said we should go out again tomorrow. she has not done that in forever. We do need one of those oxygen cylinder holders for her little wheel chair though. We have to perch the tank on the feet and she kind of hugs the cylinder while we push her around. I’ll try to get a picture of it next time we go out, it’s really cute. LOL