I just got off the phone from ordering the Vest, YEA!! She said it should be here in about 1 week. We are going to do a 30 day trial to see if we like it. They are going to send out a Rep. to show us how to use it, but from what everybody tells us, it's not that hard. I called a couple of CF moms in the area to get their advice before we made our decision.
We decided to go with The Vest by Hill Rom. It is the one that has been around the longest, and Hill Rom is the brand that most Hospitals use for their equipment. The Hill Rom also just came out with a brand new model-105. It is a smaller unit, has hoses that will pop right off if need to, has a remote, and comes with a neat carrying bag on wheels. It has a lifetime guarantee, will replace any parts if they break, and will send you a bigger vest for no extra charge when needed.
His chest right now is 18 inches, which is the smallest it can be for the Vest. So, Lil' Chris just made it, thank God! Another reason we went with the Hill Rom, is that when his chest is 23-25 inches, he can get the Chest Vest by Hill Rom. In their latest studies, their breath test(I think is what she called it) has had higher scores when the Chest Vest is used rather than the full vest. There are still tests being done as to which frequency setting works best too. The 2 different vests have different frequencies(which is the speed of compression).
What is The Vest? It is an Airway Clearance Technique. Instead of having to do manually physio therapy and pound on his chest, back, and sides, he would wear this vest that would do all the work for you. The Vest is hooked up to a machine that compresses and decompresses air in the vest to make it beat on his chest, back, and sides. The pounding helps clear the mucus from the lungs, to lesson the chance of bacteria building up in the lungs. This reduces the chances of getting lung infections that leads to irreversible lung damage. The doctors will tell us what frequency to program the machine to. The machine saves that program, so we can just start right away each time. The different frequencies make it pump the air slow or fast, soft or hard.
One of the CF moms that I talked to today said that her 4 1/2 year old girl uses the Smart Vest(a different kind). She does it 2 times a day for 15 minutes each. She uses 3 different frequencies at 5 minute intervals. After each 5 minutes, they tell her to cough, then do the next frequency. She can put the vest on all by herself and turn on the machine all by herself. She has had the vest since she was 3. They all LOVE it.
From what the doctors told us from the very beginning, Lil' Chris and all CFers will wear a Vest for the rest of their lives. They will use it 2 times a day for 30 minutes each when they get older, and maybe use it more when they have a cold and need to get more mucus up. Maybe it is just our clinic or state or country that does this, I'm not exactly sure. I'm just glad that we are getting it now, it will make all of our lives MUCH easier:)
For those who read this blog and don't have a vest, I highly recommend asking your doctor. It could add years to your life I'm told. The only problem is that it is VERY expensive, but WELL WORTH IT. They range from about $13,000 to about $16,000. Luckily for us, our insurance and secondary insurance (that our state has), will pay for most of it, if not all of it. So ask about the vest, ask about a secondary insurance, and ask about other ways to get the vest paid for. I was told that the Hill Rom Vest has a program that will cover the cost if you can't afford it. It doesn't' hurt to ask; )
I'll let you know when we get the Vest and how Lil' Chris does with it,
M
PS. HAPPY MOTHER'S DAY!! HOPE YOU HAD A GREAT DAY!! I'll post some pics of Lil' Chris all dressed up later ; ) It was so cute!
On Panic and Presence At Such a Time As This
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His mama who loved him first was struggling with drug addi...
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8 comments:
Congrats on getting your vest ordered! I have always says I would mortgage my house for it, I love it so much! We had minor excitment here, Daniel gets to switch to chewable vitamins! No more smelly drops. Now I just hope he likes the taste. Enjoy your week. Daniel's Mom
That's so great M! I'm so thrilled for you guys & I can't wait to hear / read (LOL) the first update on how he makes out the first few times he uses it. Woo woo!!
I'm glad to hear that Daniel is getting to move to chewable vitamins too! That's great & so much easier I'm sure! Sounds like a great day for everybody!!
Dear M, It's good to hear that your getting the vest. Even if he has his tough times, Lil' Chris will get used to it:) Janna got the vest right after they came out with the 104 version, so it's good to hear that Chloe will be able to get the 105 (hopefully).
I haven't checked my email yet this morning, but I assume that you got my email. Thanks again for checking in on us.
My husband looked at starting a blog site. I told him if he'd take over the laundry, cleaning, and cooking for all 5 of us, I'd keep the blog up and running :o)!! Just kidding:0) Seriously, I'd love to be able to share pictures and keep friends and family updated that way, but I'm afraid I might have a battle keeping priorities right when it comes to keeping it updated :) Maybe... we'll see.
Going to run for now...
Susanna
Great news! Hopefully you guys will not have any trouble with Lil Chris and his vest. That's awesome that your insurances will pay for most if not all of the costs for the vest! Praise God!
Looking forward to seeing pictures of my lil man all dressed up!
PS did you guys the pictures of the boys I emailed to you lasst week?
Hi M,
Have you given any more thought about trying to get some local CF moms together. Boy could I use an evening to talk with moms who get it. I just finished Daniel's treatment and it was awful. He did not want to do it. He cried and screamed through his breathing treament and half way through his vest. Finally he was so exhaused, he feel asleep. I hate this. I do it because it is important, but hate that as a toddler he doesn't know why his mom makes him. Thank goodness he usually doesn't mind, just having an off day. He is sleeping so peacefully now - hard to believe.
Daniel's Mom
Steph,
We did get the pics of the boys. Thanks, they were sooooooo cute. I'm going to try to post the pics of Lil' Chris all dressed up soon.
Hey Daniel's Mom,
Sorry your having a rough day with Daniel. I'm going to give you a call later b/c I don't want to wake up Daniel(that might make it worse;). If you read this before I call you, give me a call. I'm here for you to vent;)
M
M, Praise God! That is great news that Lil C is getting the vest and the insurance will pay for most, maybe all. Praying that the insurance will pay for all. Keep me posted on how he does with it. Let Daniel's mom know that if he is anything like Lil C's cousins, he will think the vitamins are candy! lol Let your CF moms know that I pray continue to pray for them and their families. Can't wait to see Lil C's pics.
Lots of love, hugs & kisses
Mom
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