Thursday, July 23, 2015

Day 9 (7-22) Day 10 (7-23)

Day 9 Statistics:
0900: 98.2 temp
           100 Oxygen saturation

1350: 98.5 temp
           100 Oxygen saturation
           132/67 BP

1530: 99.2 temp
           100 oxygen saturation

2000: 99.2 temp
           100 Oxygen saturation
           102/54 BP
           16.54 weight

Day 10 Statistics:
0900: 98.5 temp
           99 Oxygen saturation

1945: 97.8 temp
           100 oxygen saturation
           104/79 BP
           16.93 lbs

Day 9 Input:
15 ounces milk
3 ounces fortified milk
7 tablespoons oats
3 ounces applesauce
3 tablespoons prunes
3 teaspoons sugar
3 teaspoons butter

Day 10 Input:
17 ounces milk
3 ounces fortified milk
7 tablespoons oats
3 ounces applesauce
3 tablespoons prunes
3 teaspoons sugar
3 teaspoons butter

Day 9 Output:
7 wet diapers
5 soiled diapers

Day 10 Output:
8 wet diapers
3 soiled diapers
Light spitting up

Day 9 medications:
Ranitidine 4ml (0830)
Ceftriaxone 1 syringe (Day 8 of 21) (330 pm)
Steroid 2x (1100 am) (1000 pm) (Day 5 of 10)
Azithromycin 3.5 ml (Day 5 of 10) (1045am)
12 Creon 6,000
1 probiotic
1/3 bag fluids
Albuterol 2x
Hypersal 7% 2x
The Vest 4x 13 minutes each (13 frequency, 2 pressure)

Day 10 medications:
Ranitidine 4ml (0900)
Aquadex .5 (800pm)
Ceftriaxone 1 syringe (Day 9 of 21) (340pm)
Steroid 2x (1100 am) (1000 pm)
Azithromycin 3.5 ml (1030am)
13 Creon 6,000
3 probiotics
1/3 bag fluids
Albuterol 2x
Hypersal 7% 2x
The Vest 4x 13 minutes, 10 minutes, 12 minutes, 14 minutes (13 frequency, 2.5 pressure)

Doctor Notes Day 9:
The mob arrived at 1105 and said Roanan was doing great! We are going to do the probiotics 3x a day with oatmeal feeds. We are on day 8 of 21 for the antibiotics. Day 5 of 10 for the Azithromycin and steroid. R was admitted for failure to thrive and the bronchoscopies. His statistics are all in the normal range. Roanans weight gain looks wonderful, we will remain on the same regime. At this time there are zero concerns.

Our pulmonologist arrived later and confirmed what the mob said. She is thrilled with his weight gain and his lung improvement. The right lower lobe is still crackly but it sounds like it is improving. She things Roanan is doing great. We are so blessed to have her as our doctor. She always comes and checks in on Roanan and she listens to me vent without ever complaining. She can always find a positive and that is so admirable.

Doctor Notes Day 10:
The mob came this morning and didn't have much new news. His weight gain is continuing to rise, check. His vitals are wonderful, check. He is the happiest baby they have ever seen, check. Roanan is also the youngest child they have given a tune-up to with cystic fibrosis, check. The main doctor on the floor explained to the students and residents (per our pulmonologist request, thank you) the significance of a tune-up. It was so refreshing to hear someone else other than myself explaining the importance of a tune-up. Unfortunately, most nurses don't deal with CF people on a regular basis which yield loads of explaining and repitition for the parents. To be honest, its frustrating and exhausting to have a new nurse everyday and have to explain why you do what you do. But I am not complaining, I love to share information about CF and if I can help a family in the future by educating a nurse on CF I gladly will. Anyways, Roanan is doing perfect. Still zero concerns thus far.

The pulmonologist came in around 7ish and listened to Roanan and advised still crackly. However, he sounds much better than in the past. His breaths are deeper and easier and that is such a blessing. A huge prayer answered to say the least. She is pleased with his weight gain and always jokes that I should just give him butter in a spoon. Ha! She said our insurance is not wanting to pay for Roanans vest until he is four. But she is still working to get it for him ASAP. She has written letter after letter after letter, plus numerous phone calls. She is determined to get Roanan the equipment he needs to breathe easy. She is such a blessing. Please pray for her and all of her patients along with all those living with CF and other lung issues. Breathing is something that should be easy...

Updates Day 9:
Changed broviac dressing. (Roanan tries to rip it out and the tape off every chance he gets.)

Update Day 10:
New IV tubing and piece towards the broviac. (The old/new one kept coming unhooked. Once around 5am and again around 3pm, we changed it at 315pm and flushed it.)
First day with 3 probiotics
New nebulizer cups. (That's a post within itself.)

Momma's notes Day 9-10:
Blessed, blessed, blessed. I feel like I just need to stand and praise 24/7. My life is so phenomenal. I have a wonderful family, a splendid husband, 2 caring fubabies, and a perfect child. I love spending every second of everyday with him. He is such a light to be around and he has been the spark I have always desired to be in my relationship with Christ. Roanan ignites every fire within me and he makes me feel invincible. With his love I push for things to be perfect. I speak up when it comes to his care. I don't let anything slip through the gaps. I am "that mom" that the nurses and doctors dread coming. I want to understand why, how, the effect, when, and what else. I want to do everything and more to beat cystic fibrosis. I am determined to not let cf take my son. We will beat this. I am the mom who prays without ceasing and uses scripture to enhance my prayers and my relationship with Christ. Going through this tune-up has been more than eye opening. It has shown me how strong a parent with a unique child has to be. It has shown me that I can share God with everyone and anyone. And a voice needs to loud (& kind) to be heard. You must be educated, confident, and firm in your stants to get the care you desire to have. I have felt God and embraced his presence. I have felt so much love from friends and family its breathtaking. The amount of support we have received is mind blowing. I can't say thank you enough... From the bottom of my heart, thank you. My family loves and appreciates you more than I know how to describe.

Thank you for every prayer, penny, call/text, meal, and etc. I pray that you are blessed more than ever before. Tears feel my eyes as I am genuinely amazed by each of you. Thank you.
Thank you Lord for my son's health and for all those supporting him.

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