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    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
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    azithromyicin (M, W, F)

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Long Day, but still at home

Went to the dr’s today.  On the way to the appointment I had a knot in my stomach like I haven’t had in a long time.  I was feeling sad and quite concerned about being at this stage with this current illness.  I was thrilled that Rachel’s weight was stable (well, considering she wanted to wear shorts under her sweatpants, a t-shirt and a sweatshirt over top…I didn’t object =).  Within the first two minutes of the dr being in the room she said the dreaded phrase.  “I think hospitalization is our next move.”  She was really uncomfortable with Rachel being where she is after hitting her with the high powered antibiotics and steroid.  So, taking a deep breath and surprisingly feeling a great sense of peace(***ONLY COULD COME FROM THE LORD), I asked what sort of iv antibiotics she would get in the hospital.  She said tobramyacin, I knew there was a high powered inhaled version of that drugs too, so I gently lobbied the idea of trying that first.  It would be used off label because Rachel doesn’t have the bug that they usually use that for, but the dr was willing to give it a try.  She obviously is quite concerned with the way Rachel sounds, but said she would give us 5 days to make a huge turn around.  Since our ultimate goal is to help her maintain her lung function as high as she can for as long as she can, I think 5 days gives us enough time to really see if this drug will work.  I feel a sense of foreboding, but a bright light of hope as well.  God is big.  He is more than able to heal.  I am so thankful that He walks with us on this path!!! It is a hard path and a sometimes difficult path, but His grace is evident.   I love knowing He is here and He directs my paths because I come to Him asking for Him to lead.  It gives peace and a sense of comfort, even through the tears of today.

I did well most of Rachel’s appointment.  Rachel did amazingly well.  She was of course all smiles with the tests that she did, even the “yucky ones” as she calls them.  It’s so funny how everything is such an adventure to her sometimes.  I love that about her.  I was feeling a bit frightened and uncertain.  Not her, “What fun things did you bring for me to do in your purse mom?”  She knows that I try to bring fun things considering we are usually there anywhere from 2 to 3 hours everytime.  I did start to lose it as we were getting our walking papers.  They were telling me about the 4 additional doses of med’s that we will start to try and rid her body of whatever bug/issue that she has in her lungs right now.  I was fine with that, and then the nurse started telling me the side effects.  Tears sprung to the eyes!!  “I hate this disease!  I wish it were different!” I expressed to the nurse.  She kindly said, “But you do it so well. You are doing  a great job.”  I so wish I just didn’t have to do it, in one breath, but in the very next thought/breath, I am so thankful that I GET TO DO IT.  It means that I get to be a part of God’s greater plan of knowing Him through trials, it means I get to know a precious little girl, I have a direct opportunity to rise to a level of life that you can’t know unless you face the fear of illness and death on a constant basis. So, as we add more medicines to Rachel’s arsenal of   med’s.  we pray for endurance and strength to be strong and unmoving when she fights the med’s and the side effects. I pray for understanding and patience when we get tired.  I pray for a gentle heart and a tough love to be sympathetic, and yet do what we need to do.  Unfortunately the side effects of the med’s we have added the last month include increased risk of deafness, joint deteriation and pain, rotting teeth, hoarse voice, and who knows what else, these are just the things we know about.  I was saddened to think that this is just what we have to do.  I say we, but it is not me that has to feel this way.  I feel mad at this disease, and a total dependence on the Lord to come alongside.  I am humbled to think that the God of the universe does!!  That is an awesome thought to end on tonight.  Tomorrow, we start the harsh abx’s so I will need all the strength I can muster, just to hold and administer the inhaled to Rachel while she tries desperately to get away from it.  It is with HIS strength that we continue.

God is strong and mighty in battle.

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