Jan. 6th 2015
The day began with synagis shots at 9:45. Roanan received 2 huge shots to both thighs. He was a brave trooper to say the least! I have read blogs and spoke to other parents about synagis shots and they have all described their child/children being in extraordinary pain during the administration of the drug. Some parents recommend applying EMLA cream prior to receiving the shots due to the pain. Unlike vaccinations synagis shots only hurt during injection they do not become sore or cause temperatures like a vaccine. Thankfully, R has done phenomenally well with his shots so far. Praise the Lord. The staff who performs the shots are wonderful and afterwards they give the kiddos a little toy for their bravery. I am always impressed by East Tennessee Children's Hospital, I am so thankful for the great care we receive.
We arrived at clinic. R is doing great and does not appear to be affected by the traumatising shots he just received. He greets the staff with waving arms and a smiling face.
First to visit is the pharmacy fellow. He makes sure we are doing all med's correctly and arranges all of our refills. He is working on getting us back on the probiotic train. We have been trying to get Florajen4Kids for a few months now. Apparently, insurance doesn't want to pay for it and numerous pharmacies don't even carry it. Florajen will run around $1,000 a year outta pocket. R really benefits from the probiotics and we will do all we can to find it and get it back in his system. In the meantime we are trying to feed him yogurt as much as he allows.
Next was respiratory. She didn't have any new information for us but she just wanted to check in. Love her, she always makes sure we have all we need to provide R with the most optimal care possible.
R and I then went for vitals. R is growing! Woop woop! He is currently in the 31st percentile! Momma was very pleased dietary on the other hand still wants more improvement... Blah 😒😯
Dietary was next. She asked about R's eating habits and daily habits which are as follows.
Wake up: 0800, eats about 2ou breast milk
Takes prevacid 7.5
Attempts to take vitamins
0830: nebulizer (albuterol & saline) and vest (30min 100%)
0910: play time
0930: try to feed food
1000: breast feeds, nap
1130: awakens, play time or shower time
1230: offer lunch
1300: play time, offer snacks throughout
1500: nap, breastfeeds
1630: awakens, play time, offer snacks
1700: dinner time
1730: play time
1900: cool down, begin treatments (albuterol, saline, pulmozyme, and Vest)
2000: bedtime, breastfeeds.
* we add 1+ TBS butter to foods, .25 tsp salt to foods, and try to feed avacados and oils a few days a week.
Dietary was happy that we are finally going up the curve but they want more however right now they have no new ideas. So at this time we are just doing our best to offer R as much food as possible. It's up to him to eat as much as he wants, I am not comfortable force feeding him 24/7...
* R also takes 2 enzymes with meals and snacks
Lastly was the nurse practitioner. (Unfortunately, we didn't see a Dr. this time, but next time I am calling preappointment to ensure we see a Dr.) She said R sounded clear and she didn't have any main concerns. She questioned me on my denial of the flu shot, but I stood my ground. She mentioned his weight as her only concern and she set up us for an appointment the first week of Feb.
R then had a throat swab, signed some paperwork, and was out the door.
Today, 1/13/16, I received a call the R's culture was positive for enterobacter again. At this time we are trying to wait it out since he was recently on amox/clav (antibiotics). It breaks my heart to know my perfect little man is buggy...
Momma's notes: I feel like R is doing great! CF had been pretty quite lately and hasn't made a scene. I feel so blessed that we can maintain his disease and keep him healthy with medications and treatments. R is talking continuously, trying tons of new foods, and pulling up on everything. He loves saying Uh-Oh and waving bye-bye. He always cries for his mommy and he strongly dislikes being told No. R is brave and is always willing to try new things. He is hilarious and is always on the move. R crawls faster than a cheetah and is trying to stand alone. He has six and a half teeth and more coming. He has done great with teething. R is truly an amazing kid who never complains, whines, or cries. He is content just hanging out and watching bubble guppies. R is a great dancer, painter, and son. I praise God daily for placing R in my life. He is my joy and hope. I am so thankful for this life.
I cannot believe my little human is almost one. Praise you Lord for his health and happiness.