Sunday, August 30, 2015

That moment when you remember you write a blog....

Oh my, so much has changed since I last written but I will spare you the details and hit the highlights. You may wanna grab a snack, its gonna be a long one!

After leaving the hospital home was so foreign. For a few days I would catch myself throwing diapers in a pile to be weighed. I wrote down every detail of our day for over a week. And I'm pretty sure I forgot how to function outside of a hospital. Luckily that only lasted until laundry piled up and I had no bowl for cereal. Roanan was so excited to be home. It didn't take him long to remember how to jump in his jumper or how to roll around in the floor. He has accomplished so much since we have came home. I would rate him 8.5/10 on sitting up. 10/10 on rolling, back to belly or belly to back he is a pro! He has recently realized how to be gently when petting Lela and Ava. Now he only pulls their tails or squishes their feet. Thankfully they don't seem to mind. R's favorite thing about coming home was bath time. He enjoys every second that he can splash in the water. His favorite thing to do is sit in the tub (with Lela) and watch Little Einsteins. Yes, you read that right my fur baby happily sits in the tub with R during movie night bath party. Call us crazy. R is also beginning to want things out of his grasp while he is in the floor. It's very entertaining to watch him roll over and over and over until he finally gets there. I believe soon he will realize how his legs can help with that. 
On the health side of things:
We have switched to a certified cf clinic in Knoxville. There we see numerous doctors who specialize in cystic fibrosis. We are so blessed to have an accredited cf hospital so close by. I am so thankful Seth and I decided to switch. Since we have been there we have made a few changes to Roanans health plan.
• We have added pulmozyme which we can tell is making a huge difference. His cough has completely faded away it's amazing. This video explains what pulmozyme does and about what his other nebulizer meds do. It's really good!

• We have added prevacid 7mg for his acid reflux. He had been having alot of issues during the night.
   × unfortunately, we have not seen much success with the prevacid vs the Ranitidine. Currently we are doing both with minimal improvement.

• R is still not a big eater. Since we got off the steroids his appetite has plummeted. He gags and vomits 99.9% of the time during baby food feedings. Lately he has been vomiting 3-5 times a day. (During his sleep as well)

• Last Wednesday we added cyproheptadine 2.5 ml  to hopefully increase his appetite. It's an antihistamine with a side effect of hunger.
   × So far, zero improvement.

• We are still adding the Florajen probiotics 3x daily and butter to feeds. The docs also encourages us to add salt as well.

• The docs also want us to up his vitamin intake from .5 ml to 1 ml. This seems like a simple task but it is not. Roanan can't stand his vitamins and usually throws this up every time. They are bright orange and taste horrible and stain everything..... I honestly can't blame him for getting them out of his system. We have tried to split them up throughout in day in smalled doses, fail. Tried it on food, fail. Tried it in milk, fail. Oh well. We try.

• R still does 4 best treatments daily. They last 30 minutes and he is on the 90% setting on his incourage vest system. His vest has helped him cough up stuff a few times. It's amazing how much gunk is in his lungs.

• Roanans does albuterol then hypersal in the morning and at night. He does pulmozyme at 3, during each nebulizer treatment he also does his vest. This helps move the mucus as much as possible.

• He is still doing 12,000 Creon before all feeds and will be uped soon.

• He still gets rashy so we apply his steroid and antibiotic creams. Since switching to the honest company products his rash has faded significantly. It's pricy stuff but I can tell a HUGE difference in his skin.

• R grew his first culture! He had light growth of Enterobacter cloacae complex.  Nothing to bad and we aren't treating it right now. We are hoping that it will go away on its own. 

At our last visit at clinic they did loads of blood work. They literally took all the blood they could take for his weight. That equals about 6 viles. He was so tough of course. They will be testing this for vitamins levels, thyroid function, and etc. We will know those results September 16.

They also repeated his sweat test on both legs. The results on that were 72 & 74. The first time we did this when he was around 3 weeks was 89 & 92. This test was alittle different and sent electric currents up his arm to stimulate the glands. If you have every watched The Green Mile this looks very similar to their execution method. It's 2 bronze things with wet gauze under them touching the skin. Attached to the bronze are 2 wires, one for "ground" and for "hot" aka black and red. They stay on his legs for 5 minutes and stimulate the glands. Then we place fresh clean cause under the red electricuter and tape it up. We then apply heat, wrap it, and wait 30+ minutes. Then the sweaty gauze is removed and sent for testing. Very interesting test and very different from the first times we did it. This test with electric stimulation is the only test approved by the cf foundation. The one we had previously is not an approved method of testing. The results are not really a sign of anything. Any number above 60 signals CF. Some say the lower the numbers the milder the mutation. But no science supports either theory.

We did get more information of his genetic make up. Well, not really more info but just the correct name. ∆F508 + 312OG>A

8/9: hives appeared after eating squash. They disappeared after his bath.

8/12 1st visit at the Knoxville clinic.
17.6 lbs
100 O2 saturation
26 in long
124/68 BP
98.1 temp
Added salt
Added pulmozyme
Added prevacid
Lungs sounds good
Weight gain good
Did throat culture

8/14 First trip to the zoo!
Started prevacid

8/15 Coughy and spit up ALOT

8/18 6 mo shots
Ran temp 101-102

8/18-8/20 temp remains 101-102

8/21 finally received pulmozyme via mail from the CF services pharmacy associated with walgreens

8/22 Rashy

8/23 Still Rashy

8/25 pumpkin carving

8/26 clinic
Head circumference 46.5 cm
BP 108/67
Pulse 135
Oxygen saturation 100
Temp 98.1
Respirations 52
Length 67.9 cm
Weight 8.02 kilos
Did sweat test again 72&74
Took blood
Lungs really clear
Zero concerns
Added cyproheptadine for appetite increase (8/28)

8/29 coughed up handful of cloudy thick mucus.
Roanan is doing perfect. Developmentally he is right on target. His weight is in the 50th percentile along with height and overall. He is coughing way less since the pulmozyme. He cooperated very well with treatments and his health plan. When is comes to CF he is doing great. Our treatment plan seems to be working for him. Praise the Lord he is doing great. He is living and loving life. A little mucus doesn't slow him down. I am so blessed to be his mom. I am so in love with  him.
I am so thankful God gave me Roanan. I am so thankful God gave me this life.
Side note: we will be having a yard sale for Roanan this weekend. The 3rd and 4th it will be located right off the Asheville high way in front of the dollar store. 5 family yardsale, lemonade, snacks, and etc! Hope to see you there

**Please do not remove photos for personal use**

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