I'm sorry I haven't updated. I wanted to take a break while I was on leave and just focus on Kennedy. Getting her settled at home and set up with her nurses and doctors. I'm happy to report she has been doing great at home! A few ups and downs but that's to be expected especially during the cold season. Since she's been home we've been able to ween her oxygen down. She came home requiring 3 liters during the day and right now she's on about 1.25 liters which can probably go down to 1 next week. We've also been working with her pulmonologist to ween her off a few medications. She's officially off her sodium chlorine, potassium chlorine and her diuretic. She's still on CPAP for 8 hours overnight but her doctor said she'll probably be off that in the spring. He doesn't want to try anything during the winter months. Once spring comes she'll have a sleep study so they can be sure she does well through the night without it. If she passes we can take her off! One less machine to have clogging up the Crist House. We're going to keep on working on dropping her oxygen and get her off that over the next few months also. All great things to look forward too!
We had a follow up appointment with her ENT. He's planning to do another broncoscopy on her in January to see how her airways are. He did a scope of the upper airways and thought they good but the big picture is below her vocal cords. Art and I are really interested in seeing if there's been any healing in her airways. We're not expecting too much since it's only been 6 months but we're hoping for something.
Growth wise she's gotten very long since she's been home! I think that's her Irish side shining through. Weight wise not so much. The last time we were at the doctors she was 13 pounds so they're a little concerned that she hasn't been gaining enough weight but that has to do with issues we've had with feeding her. I'll spare you all the details and just say it's been extremely challenging! But lately I feel like we've turned a corner. I'm not sure if it's because she getting bigger and maybe the belly can tolerate more or if coming off all the medication did it but the last two weeks she's done great with her feedings. We've been able to increase her volume with minimal spit ups so I'm hoping when we go back to the GI next week they're impressed.
Nursing has been...interesting. I'm happy now with the team that we have set up but boy was it a PITA to get here. Especially in the first few weeks. I had to fire 2 nurses. One forgot to feed Kennedy for 4 hours (she's on a continuous feed overnight) and the other we caught sleeping, twice! And she didn't just nod off, she was full on passed out snoring in the chair in Kennedy's room. But now we have nurses we like (for the most part), especially her day nurses. That's going to mean alot when I finally go back to work. At least I know I can trust those I'm leaving her with.
Insurance has been fighting us on the amount of coverage they want to approve. We've had 16 hours, an 8 hour shift in the morning (8am-4pm) and an 8 hour shift overnight (10pm-6am). They dropped us down to only 8 hours. My doctors and nursing company fought them and appealed the ruling and they eventually approved us for 16 hours through 12/31. After that the fight starts all over again. Since I'm going back to work I'm on pins and needles hoping we get our 16 hours. Otherwise I don't know what we're going to do about watching her overnight.
As I said, I'm going back to work soon. These last two months with Kennedy have been so amazing. I'm exhausted physically and emotionally but I wouldn't have it any other way! I've been able to get Kennedy settled here at home. I've been able to monitor my nurses closely and say what I do and don't like. I've taken her to all of her doctors appointments (and there have been ALOT of doctors appointments) and got her comfortable with them and them with her. We've developed strategies and goals for her and I'm so happy I was able to put all of that in motion.
Most importantly I've learned to care for my daughter better than any nurse she has. I've become comfortable with all of her machinery and know what she needs medically. But I've also gotten to know her. Seven months in a hospital is a long time. It's a long time to be away from anyone but to be away from your infant? Well its just gut wrenching. We missed so much with her and that was what this 2 months was for. I've learned so much about her, what makes her smile (which is just about everything), what makes her sad, what she's interested in, how she likes things. I've seen her get stronger and grow and learn new things right in front of my eyes and it brings me so much joy! She is the sweetest, happiest, calmest little girl I've ever met. Her smile will brighten up the hardest of days and make you forget all your worries. To think of where this little girl started out and to see her now, well it's just simply amazing.
My biggest joy is seeing Makenzie being a big sister. She's wonderful at it! She really is curious about all of Kennedy's medical stuff and wants to listen and learn all about it. My clinical manager came over the other day to show my mom how to care for the G-Tube and Makenzie sat down and listened to her explaining everything. She loves to try to do things for her. Right now she's working on teaching her how to clap. She comes into her room every morning and reads her a book. It's just beautiful to watch. It makes the struggles over the last three years worth it to finally see my children together.
This Christmas will be an emotional one for us. It'll be the first one without my father in law. I know that will be tough for Arthur and his family. They all obviously miss him, especially Rose. But we all also have so much to be thankful for. This year has been the hardest year of our lives. We've been pushed to the brink. Our lives were turned upside down and emotions were always all over the place. But together we've made it through and have overcome so much. Having Kennedy home with us to celebrate will make this season just magical! All four of us will be here to wake up together on Christmas morning and that's all I could ask for. She has completed our family and brought the best out in all of us. She is a special little girl.
One of Kennedy's night nurses who I just adore asked me one morning if I had a dream while I was pregnant with her that she would be someone important. I told her no. She then told me that she was very into numerology and she did her numbers. I don't know much about numerology but she explained it's based on your name and birth date. She told me when she did Kennedy's numbers she received master numbers with both her name and birth date. She said "Katie, she's very special. She's destined for greatness." Considering what she's overcome in her short life, I wouldn't doubt it!
I want to wish you all a very Merry Christmas and the Happiest of New Years!
Love Always,
The Crist Family
Arthur, Katie, Makenzie & Kennedy
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