I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Wednesday, March 25, 2015

Twinkle Twinkle Little Vest



One of the first things we learned when Maelee was diagnosed was the importance of CPT (chest percussion therapy). Our PCH team taught us how to do manual "clapping" in 8 different places on Maelee's lungs that were target zones for getting the thick CF mucus unstuck. They also taught us that you need to be careful when you do it an to get your hands placed in just the right position so as to prevent hurting the baby's other vital organs - since essentially you are hitting your kid in 8 different places in an attempt to loosen the mucus.

It is another layer of the baby routine that you need to add in at infancy and get it in hopefully twice for a day for 10-20 minutes - along with the regular feedings, changings, naps, etc that come with a every baby. 

So babies love to be turned in all kinds of strange positions and have their parents "clap" them with their hand over and over again right? No of course it wasn't fun for either of us. But we also learned that when she got big enough we could get a CPT vest for her that would do the percussion. Then when she gets even older there are other devices that she can use when she is able to be coordinated enough since they require a special way of breath intake.

She was 3 when we were able to get her vest. At that time in 2010 we were told that the price of the vest was approximately $15,800. Our portion after insurance (thank heavens for insurance) was about $5,000. We were able to get the vest from an excellent company based out of Minnesota. We had been anticipating getting one for a long time so it was a huge deal.   

As I started talking with the representatives at the company I was thrilled to hear the sound of their Minnesota accent. My little brother was serving a mission in Minnesota at the time for our church and we hadn't seen him in a long time. Every time I talked to the vest people, as things got arranged for payment and delivery, on the phone I thought of him and the people he was serving and living around in Minnesota that sounded like the people working at the vest company.

A representative from the vest company came to our house when the long anticipated package arrived so that she could show us how to set it up and use it. We tried to really fire Maelee up about it because we wanted it to be a successful process for her.

The woman from the company came over and won Maelee over with an adorable teddy bear that could sit with her while she did her vest. She was such a lovely woman and happened to have a young boy of her own with CF who used the same vest.

Maelee's first order of business was to see how awesome her voice sounded while the vest was on. It has the same effect of talking into a portable floor fan, that seems to chop the sound of your voice into pieces. The vest lady adjusted Maelee's straps, got the vest all set up, and then turned it on. Frank and I were on the edge of our parenting seats to see how she would react. We hoped she didn't cry or say that it hurt. We knew this would be a huge essential part of taking care of her body and had prayed for it to be a success.

The motor started and Maelee started to shake and then she started to belt out "Twinkle twinkle little star," to see how she sounded. It was awesome. She still has the teddy bear that the woman gave her and its a treasure to her still. There have been many days when getting the vest done was a fight, but mostly it has been something that is accepted as part of the routine and necessary. She has started to notice a difference in how she feels if there is a weekend day skipped from the vest and knows she needs it.

Orson was able to get his when he was 8 months old. The most amazing blessing for him in his vest, and in all he does with his CF is that he has Maelee to blaze the trail for him. He doesn't remember a time when the vest wasn't a part of his life and he has a buddy to sit and do it with. Sometimes it bothers him still and asks for Frank or I to sit by him closer or hold his hand when he does it. It is actually a pretty special part of the day because its a mandatory "holding still" 30 minutes when all the kids are together. We are very thankful for the blessing of our CPT vests and know that using them everyday is so important to the maintenance of the disease.



















 
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