Sunday, July 26, 2015

Day 13 (7-26)

Sunday Funday! Seth, Roanan, and I have had a wonderful family day. Seth brought yummy pizza for lunch and we have a super yummy food delivery for dinner. Thank you! We went outside and let Roanan get some fresh air. He enjoyed the warm sunshine! Our time was short lived due to a beeping IV, ha. The joys of hospital life! We started R on carrots today and he was very impressed. He is still getting his super oatmeal but this is just normal baby food for an extra oomph! After much pushing, we finally got Roanans broviac dressing changed and it looks so much better. It is a challenge to keep a 5 almost 6 month old from pulling at a foreign objected taped to their leg. Roanan is continually amazed by his broviac. He enjoys trying to rip it out and chew on the IV tubing. The bruising is almost gone and the surrounding area is no longer swollen. His broviac is stiched in and causes zero discomfort. I am so thankful Seth and I pushed for a more permanent solution vs numerous IV's. Parents have just a loud of voice as doctors when it comes to their child's care. If I have learned anything from being here its that. In order for your child to be treated like a human being vs a number you must speak up. Thankfully God has prepared me my whole life to speak up for my child. I would rather step on a few toes than get minimal care. Roanan will not lose the battle to CF and I will do everything in my power to ensure that. God blessed me with a voice to speak up for my child and to spread the love of Jesus.

Pulmonologist Updates:
We believe the vest is in the mail and appeal letters are still in the air with insurance. Prayers that it will all resolve itself.
Roanan is still crackly in the same spot. His airways are sounding perfect. We are still waiting on the biopsy growth results.  The steroids and antibiotics are still helping! We may be sent home with a new nebulizer medicine to break up mucus. Still pending.

Mini Mob updates:
No changes. Love the weight gain and vitals. His lungs sound clearer. His broviac site isn't red, inflamed, or infected. Thank you Jesus! All is great!

Started carrots, loved them!
Changed Broviac dressing.
Coughed 2x today
Missed vitamins. Oops.
Went outside.
Roanans tooth is poking out, we gave him some Tylenol for the ouchie!
Day 12/21 for ceftriaxone.

14 ounces milk
3 ounces fortified milk
2.50 ounces bananas
2 ounces prunes
2.50 ounces carrots
5 tablespoons oats
2 teaspoons butter
1 teaspoon sugar
3.2 ounces applesauce

8 wet
4 soiled

Ranitidine (0840) (2200)
Creon 6,000 8capsules
Ceftriaxone 18 MG
Steroid 2x (1000) (2000)
Azithromycin (1030)
Tylenol (1010)
Florajen (1100) (1500) (1800)

0800: 93/55 BP
          97.2 temp
          99 oxygen saturation

1400: 98.1 temp
          99 Oxygen saturation

2000: 99.1 temp
          135/86 BP
          100 oxygen saturation
          17.14 lbs

"Every blessing you pour out I turn back to praise. "

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