Overdue Blog Post
Let's begin with clinic on Wednesday 2.10.16.
This was a regular clinic with visit without PFT's. Overall a great appointment without complications.
** This visit I had numerous questions, comments, and etc. To sum it up, we were there 4+ hours. I'm that crazy mom who comes in with all kinds of wonderful ideas and over thought up questions. Oh well. I want my child to have the best care possible and if that makes me the crazy mom so be it!**
R's culture from this visit did reflect light growth of enterbactor colace complex, blah. Hopefully this will take care of itself. No antibiotics or medical changes, yet. This is the fourth(?) time we have cultured this bug...
Pharmacy was the first to arrive. We needed refills on Prevacid and I asked about changing R's vitamins. In the past he took liquid Aquadex and it was horrible. It almost always yielded in vomit and stained jammies. Imagine taking pill form vitamins, with iron, and letting them dissolve in water then drinking 2ml of them... These vitamins are bright orange and taste horrible. They smell awful and stain everything they touch. I have tried mixing them with food, juice, milk, and they were all a fail. R hated them and I felt certain there had to be another form of vitamin that he would benefit from. Thankfully, after much collaboration we decided to try Aquadex chewable tablets.These are about the size of a quarter and we broke it up into 4-6 little chunks. R does better with them and they taste similar to Flintsones Vitamins so I am certain in the future he will begin to enjoy them. For now, we just encourage him to eat them as much as possible. They have also yielded vomit as well but not as frequently. (& Yes, they stain as well)
**Sidenote: We are having a difficult time with insurance paying for these vitamins even though they are the same as the liquid except in chewable form. They are about $25.00/monthly.**
Respiratory came in next and she was a wonderful resource for information. She is always informed with new technologies and therapies for CF care. On the other hand, today I was the one bringing up new things.
R has a train nebulizer that we were given when his diagnosis for CF was positive. This nebulizer has worked great for us but as R grows the number of inhaled medications that he takes continues to increase. Therefore, we need a stonger, faster, and overall better nebulizer. She reccomended the Pari System (she is getting me the specific one at our next visit.) This nebulizer is so much better and will take less time that our current system. We will be purchasing this out of pocket since insurance will only pay for one nebulizer ever 5 years. (The new Pari Nebulizer System runs around $110.00)
Next I asked about an occilator, specifically the Aerobika oscillating positive expiratory pressure (OPEP)
R's breaths are still weak and don't always have enough pressure for the device to work but we have added it to our daily regime and he is getting used to it. He uses a anethestic mask where the mouthpiece is and we work for 3-5 effective breaths twice a day. R isn't a big fan yet, but hopefully with time he will learn how to push his breath out and yield results. I was very excited to get R started on this so early and I cannot wait to see his excel with it once his pressure is strong enough. I stronger believe is doing as much as possible to beat this disease and thankfully so does our care team. Our respiratory lady was very excited when I brought up this device, and she explained how they usually start doing the Aerobika around 2-3 years old but if we wanted to start now that would be great. Woohoo!! Go Mom!
We also needed a new bask for our "puffer" R decided that he would chew on it and that broke the seal. Therefore we needed a new one. Thankfully, she gave us two(one for home and one for travel). She also gave us new masks for his nebulizer at home. Woohoo! New things are always exciting... Currently R is having some fears associated with the masks, which is totally normal, so we are working extra hard with getting him back comfortable wearing his mask during treatments. When he declines the mask we still continue with treatments but instead we use the "blow-by method". This is when we allow the mist from the neb. cups to blow in his face and he simply inhales it. Hopefully sooner rather than later we will be back on the mask method 24/7.
Our dietary lady was pleased with R's growth but she still wanted more... He is currently in the 31st percentile and she wants him above the 50th. She gave us the go ahead to begin Ensure for kids and Boost for kids. She also loaded us up with coupons and free samples. R is doing okay with them, he isn't really a big sippy cup drinker, he prefers drinking straight from the milk cow... (HA) His favorite flavor appears to be chocolate or vanilla and the strawberry made him sick. (Along with anything strawberry or flavored strawberry) He has also tried the Ensure Clear (kinda like juice boxes) and he did good with those as well. Most of the Ensure/Boost products have over 200 calories per bottle or box and it has been recommended that R drink 2 daily. Currently R drinks around a fourth or a half per bottle per day... It is a work in progress...
We also talked to her about the vitamins and she said the chewables would be fine one chewy per day will be perfect! She suggested us letting them dissolve (or crush them) in juice then let R drink them. This method works great if we don't have the time to allow R to wallow them around with his 8 teeth until they are consumed.
She continued to push solid foods, butter, avacado, healthy fats, and lots of salt. Once R is 2 we will no longer add extra salt but instead we will just encourage him to eat salty foods and salt when desired. I was so glad to hear that because I NEVER salt anything so adding salt to food is so unappealing to me. When it comes to enzymes we do 2 12,000 capsules. If R is doing a small snack or just drinking a juice box we only do one. He does great with enzymes and swallows the little pebbles like a pro. Thank the Lord!
PT was happy with R's growth and development. No changes and nothing to worry about developmentally. Woohoo!!
Next was the pulmonolgist. He was pleased with all the information that the care team had provided him. He said that R looked great and his lungs were wonderful. He was excited about us starting the Aerobika so soon and he cannot wait to see how R does with it in a few weeks. The pulmonolgist had no concerns for R and no suggestions on anything else that we could do. He believes that we are doing everything possible to kick CF.
I asked him about CFRD cystic fibrosis related diabetes. He explained that CFRD is very common especially with older CF patients. Once R turns 10 we will begin testing for CFRD yearly or biyearly. The pulmonogist explained that it was possible for CFRD to be developed earlier but it was uncommon. He advised to monitor R if we suspected early onset CFRD. Thankfully we have no concerns about CFRD yet.
Our Pulmonolgist did mention a service dog for later on with CF. Service dogs for people with CF can be a temendous help. They assist with mobility during moments of weakness, coughing episodes, and strenuous days. Service dogs can also smell CFRD and the beginning stages of a lung infection. They can test for antibiotic efficiency and resistance as well. Service dogs encourage exercise and assist with mental health. He said many of his patients are working on getting service dogs for assistance. This is definitely something to consider with the progression of CF.
R has showed numerous signs of having a blood issue. For example, when R gets a tiny scratch, cut, IV, broviac, or shot he has excessive bleeding. A paper cut results in ml's of blood. With R on the verge of walking more cuts are bound to appear and if he has a bleeding disorder we need to be prepared. So we have appointment in March to get his blood checked out. (We already know that he is anemic and hopefully his new vitamins will help out with that.) No blood disorders run in our family so we are anxious to see how this appt. goes.
R always has various allergies related to food and to skin. So we also are going to see an allergy person in a few days. Hopefully, we will figure out what he is allergic to and we can introduce more foods without fear or observation. Currently, we are very protective of R's diet due to his allergic reactions in the past. R also has had issues with things in the air which results in a runny nose, sneezing, running eyes, coughing, and etc. So this appointment is much needed... R also still has eczema and we are going to have this checked out at this appointment to confirm the eczema diagnosis and treatment plan.
**We also received an EpiPen Junior.**
**We also received an EpiPen Junior.**
Lungs and belly are in pristine condition. Praise the Lord.
Last, we got a throat culture and we were good to go!
12 Month Appointment
This went great! R looked wonderful and received all the appropriate 12 month shots. He was a champ and very minimal tears were shed. He is in the 90th percentile for height and 25th percentile for weight. They had no concerns at his primary cares office and we were quickly sent on our way.
R did great with shots and never got a temperature or bruising. Woo Hoo!!
Thankfully R is in great health. Hopefully we will kick enterbacter soon!!
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