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God is Near

This week has been full of…CF transitions and adjustments.  As we have traversed through these moments I am overwhelmed by the care that the Lord shows us.  He is so very good.  Yes, there are hard things that happen, but I am constantly reminded that He is near.  I know this to be true at all times, but it seems especially apparent when times are difficult.  When in a difficult situation, there are usually just two choices.  One is to allow the situation and trials to get the best of you, or the other would be to allow God to be God and walk closer beside Him and experience His glory and goodness despite the pain and suffering.  By His grace and goodness alone I am so thankful that He is near.

Over the years we have developed a plan that really helps us in organizing and administering Rachel's medication. However, every time we go on a specific antibiotic we have to toss our schedule out the window. There are certain medications that can not be within 2 hours before or 6 hours after. It MAKES ME CRAZY!! I have to remember something new and out of our routine. It is silly, but it is emotionally exhausting and at times I have forgotten. Grr! So thankful that one medication is over and we are almost halfway through our first Tobi cycle.

Last week was a tough one in dealing with new medications with Rachel as well as side effects from some of them.  More than a few days I was just exhausted emotionally.  For me, somehow if there is a routine and a schedule, no matter how difficult it is, I feel a sense of control over it and can function.  When that schedule is upturned…it takes me a little while to “get back in the game”.  That was last week.  Everywhere I turned in the week it seemed like my plans were upset.  School was…really challenging.  Still trying to get a schedule that works for everyone and add that to trying to get in the extra time with treatments, made it really crazy.  Everyone was sort of growly (amazing how stress affects the whole family).  But God in His goodness was able to take some of that difficulty away.  Rachel fought the Tobi like a champion fighter the first few days.  Our nebulizer is able to dispense the medication very fast, but with that speed comes an intense amount of medication in a short amount of time.  The medication was really tough for Rachel the first few days.  We had a few mornings where she kicked and screamed with all that she had trying to get away from the nebulizer that I was holding.  (She has several coughing fits getting yucky junk up and out of her airways before that, so I think that was adding to her discomfort.)  Well, thank the Lord for Dads.  After talking to her about her behavior, Dad also figured out that with her percussion vest on, she couldn’t take deep breaths (her vest we figured out was a little on the small side and was maybe restricting her taking full breaths) so he waited until her treatments were over before starting the medication.  Worked like a charm!!  She still hates it and gasps for air at the first puff of medication, but is very diligent to get a breath of air and then put her nose back to the grind stone and finish her treatment!  Amazing.  Praise the Lord!!

New vest. So very fun in blue. I actually prefer the black as I am sure it is easier to keep clean than the light blue one will be. However, the new vest also comes enabled to wash. No more wiping it down with gentle cleaners! Yippee!

Second as I mentioned the vest was too small.  Poor Rachel has complained about it being tight for a month or two…maybe three.   I finally made some calls to see what could be done.  They sent a representative out to our house to measure her and watch how she did her treatment.  During that process they also noticed that we had the older model of the percussion vest.  So they ordered us the upgrade (due to some software malfunctions- which we were aware of, but totally didn’t think were a big deal).  The new vest and machine arrived this week.  The vest is blue, Rachel’s favorite color and a bit bigger (they actually had to special order a vest for her body shape which will most likely take another 2 weeks to get, but in the meantime we have one that is a bit bigger).  Our new machine has a timer on it that counts down letting you know how much time you have left on each treatment (our other one had cycles like 3/12 and each cycle was 3 minutes so you had to be able to multiply the sessions left by 3…most 6 year olds might have trouble with that calculation).  But now she knows exactly how much time she has left.  Little joys, but HUGE blessings.

The nebulizer on the left is our eflow was one of our first ones. We love it. The second one is for the medications that don't go in the eflow and the monster on the right is our new one that rocks treatments. As you can tell it is a bit of beast. Not sure if we will travel with the new one, but we just might for the amount of times that we actually do travel=). So thankful!

One other amazing blessing that happened this week.  We have had the eflow nebulizer for almost 5 years.  IT is awesome and cuts down the time on certain medication intensely (when it works- it starts out fast, but as the medication clogs the membrane it slows to what seems like a crawl changing the time on treatments from 3-5 minutes to as high as 15-18 minutes per medication and that process happens rather quickly at times due to the harshness of certain medications.  The new membranes are really expensive but the delivery on this machine is the best at getting the medication nebulized to a small enough particle size that it  benefits the lungs to the fullest).  When you have 6 inhaled medication to get through in the morning you want something that works well.  There are also only half of the medications that can go through the fast nebulizer.  The other ones needed to go through a traditional neb.  Our traditional neb was taking over 20 minutes to do each medication and, furthermore, most of the time there was still medication left in the reservoir when we stopped it.  DIDN’T really occur to me that it was slow or to try to do something about it.  But, God brought it to mind this week.  Anyway, I read a blog of one of my respected CF adults friends who told about this nebulizer that cut his treatment times in half.  I did a little research and then thought maybe we would just try to see if we would be able to get one.  (CF nebulizers are on totally different playing fields.  From where I stand the asthma ones are made to do maybe 1 medication or two several times a day and often times only when the person is sick and needs some help, verses the CF meds that is used EVERY DAY and take A LOT OF TIME with the variety and quantity of medications.  CF needs a heavy duty machine to withstand the hours a day that are needed to try to maintain health.)   SO, I made a couple of calls and to my surprise and total dismay the next day I had the new nebulizer delivered to my door!  Doctors approved it, insurance cleared it…quite sure that was just God’s way of giving us a little bit of joy in the midsts of a hard week.  Now, our new nebulizer looks like it belongs in the garage (looks like a mini air compressor and weighs about 8 pounds compared to our old one that weighed in at about 8 ounces) but I am thrilled!  PRAISE THE LORD.  The nebulizer times have been cut in half.  We are done with her breathing med’s in about 45 minutes!  Yippeee, I am still so very excited for the Lord’s provisions on so many levels.  I am reminded that He walks near.  I am reminded that He understands and knows what we can handle with His strength.

With the extra treatment in the middle of the day our time stuck to a machine is still about 2 hours, but it is still better than it could be, and I am thankful for that!  I even feel better about the hospital…should we need to go.  God has given me several great ideas (mostly during the middle of the night) that have given me a little more confidence of the Lord’s presence and  comfort when the time comes (hopefully when she is 25!) to have our first hospital stay.

God is near!  Thank you so much for the prayers.  I just wanted to let you know that I can feel them and I am encouraged.


3 Responses

  1. God is near, no doubt!!! Praising God that this week of adjustment is over. I absolutely understand where you at. If our schedule changes just a little bit, everything gets thrown off. School is always the thing that gets really thrown out!!! Treatments, eating and exercise are much more important that learning about Ancient Egypt 🙂 I am jealous of your new nebulizer compressor…one day we will have two sitting in our living room 🙂

    • Melissa,

      Thank you for your response. Do you have a blog/email? Would love to get to know your family too.=)

      It is nice to know that someone else understands the trials of battles of treatments and life. I have felt sad at times that I don’t have as much dedicated time to spend in making great lessons…however, I have also been reminded that God is the one that is doing the work in my kiddos lives, and hearts. (I have the privilege of working hard to be God’s hands, but it is GOD alone that imparts wisdom.) Also, I have a dear friend that has reminded me this week that God placed my children in our family with a purpose greater than “my curriculum”. God has a curriculum that is specific for our family and involves learning so much more than a book can teach. I keep trying to remind myself they are learning compassion, patience and understanding in how to deal with a plan that we didn’t choose and that is sometimes very hard-in God’s strength.

      As far as the nebulizer, see if you have a specific person in your insurance company that deals with special needs. This is the route that we took and it was a great blessing. We are approved to get a new one every 4 years…so it worked out well for us this time. (Didn’t help that the little one was pretty much dying.) Now we need to pray that the eflow keeps running since it is pretty old (hope it last another 4 years). Good luck to you. If you have a chance to get this one…it ROCKS!! Let me know how it goes.

      Take care-Tiffany

  2. This is a great post! I’m so sorry that Rachel is having to go through so much, which means you’re having to go through so much with regard to CF. But I admire your faith, your determination and your focus on what matters. Your story is so interesting to me because I know it won’t be long before we find ourselves there. But also because I hope to face our challenges with the same trust in God as you do. Thanks so much for being so open with your life. Thinking of you guys!!!

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