Hoping to be "listed"

This is Mike playing with the computer Attorney Fry gave him! He loves being able to access the internet in his room. CF patients have to be kept in isolation while inpatient so this helps beat the loneliness! THANKS Kristi!! Hugs

Tomorrow is the first day of Spring! It is getting so nice around here. On Tuesday the transplant team will meet to discuss whether or not they will put Mike on the transplant list. Each patient is given a number between 0-100. The sicker you are the higher you go up the list. Most patients come in around the low 30's. So far the tests have been par. Mike is still able to get around so we anticipate a low score - and he may not get listed just yet. He still hasn't had the PH probe so they will probably have to wait until all tests are complete. It is good to know he is part of the process :).

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At Mike's initial consult they did a 6-min walk and sent us home with a small machine that measures his oxygen saturation. We were thankful Mike didn't need oxygen to walk and do normal activities. The night test did show he would benefit from oxygen while sleeping. Mike is hoping he will feel more rested.

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Mike will repeat pft's, blood gases and the 6-minute walk every clinic and hospital visit from now on. His score will be updated once listed. We were given the info to start a caringpages website and told to start fund raising as this will be expensive. For now this blog will serve to update family and friends.

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For our CF friends also learning through this process, here is a list of meds Mike is currently on when he isn't in the hospital. The only change is the IV antibiotics while he is inpatient.

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Colistimethate Sodium 150 mg 2 x daily - inhalation

Advair Diskus 2 x daily - inhalation

Sodium Chloride Nasal Solution 1,000 ml 3 x daily

cholecalciferol (vit D) 1 tablet 3 x daily

albuterol 2 puffs 2 x daily (as needed)

azithromycin 500 mg 3 x per week

Dornase 1 vile - 2 x per day

Flonase 2 sprays each nostril daily

insulin aspart 1-4 units 3 x daily per sliding scale

Adeks 2 tabs daily

prilosec 1 tab daily

pancrelipase 6-8 capsules with meals 4-6 with snacks (everytime he eats)

phytonadione 1 tab PO every tues and FRI

Miralax 17 mg in beverage once to twice weekly as needed

Vit 2 1 tab daily

zolpidem 10mg 1-2 at bedtime as needed (Ambien)

Oxygen at night

Nightly tube feedings and he takes 4 enzymes before he goes to sleep for that

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Spring means Easter is getting close. Easter is such a wonderful time of year. It is filled with hope. We remember we have a Savior who loves us. We have a Savior who has endured every trial - every heartache that we feel. He suffered for us and because he lives we too will live eternally. No matter what our circumstance we can lean on him and he will wrap his loving arms around us. He is our hope!

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I am so proud of my son for the choices he is making. Not because I think they are right or wrong or because he is doing what I do or don't want. I believe he is making God pleasing choices. I believe he is living out God's will in his life. He is living each day as a blessing from God to the best of his ability. THAT is so comforting.

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School is out early today - off to see what these three boys are up to ;). Maybe it is time to go outside!

Blessings,

Gina

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