Saturday, November 7, 2015

Month by Month Review of Life with Kaitlyn & CF

Life with Kaitlyn and CF

    So much has happened for our little Kaitlyn since our last Scrapping for a Cure event this past March. She has had a lot of ups and downs, along with meeting new friends and having to say goodbye to some. She is such a trooper and watching her find joy in her life has been an inspiration to me and those around her.

    In the heat of summer, Kaitlyn said hello to her new baby brother, Logan. He has brought so much joy into her life (and to our lives too). When he was first born, she had to be the one to hold him, to kiss him, to change him. She is like his second mother! Though she loves all of her brothers, Logan has a special place in her heart. Anytime he sees her, he gets a big grin on his face. And if he doesn't see her, he is always looking around for her when he hears her voice. The love between these two is so special and sweet.

    Along with school starting for Kaitlyn and meeting new friends, Kaitlyn was preparing for another hospital visit.  She had developed polyps in her sinuses (due to CF). Her doctors planned a surgery to remove the polyps and help her sinus cavity drain better.

   This was a big hospitalization for Kaitlyn. Not only was this her first sinus surgery, but this was going to be her first hospital visit that she wouldn't have me, her mother, by her side every step of the way.  We were very fortunate to have family help out at the hospital since we would be doing this with baby Logan on board.  So, with a new baby in tow (3 weeks old), Kaitlyn started her hospital visit.....unfortunately, with a few hiccups.  Kaitlyn started running a 103+ fever within the first 24 hours of admission. She also had a drop in her platelet count, red blood cell, and white blood cell count; and she had a rise in her clotting time.  As the surgery date approached, her doctors were very concerned about her health. What originally started as a routine sinus surgery turned into a surgery that consisted of a bronchoscopy, EGD, bone marrow aspiration, and sinus surgery. All of these procedures were needed to help give us answers and assist in her care.
   Kaitlyn went into surgery with a vitamin K infusion to help with clotting and a platelet transfusion to help with her platelet levels. My husband and I with Baby Logan waited as she went back to surgery. As the procedures progressed, each specialist came out and gave us an update on how she was doing. I am so thankful for all of the prayers and for our Lord watching over her. After 2 1/2 hours, we were told the final surgery was performed and she had done wonderfully! Not only did she stay strong through the whole duration, but she far exceeded the doctors' expectations. A couple of hours later, she was finally delivered back to her room to recuperate from the ordeal. Though there was a lot of bleeding, she bounced back quickly and started getting back to her normal spunky self. After a week of high fevers, they finally vanished! And as we came to the end of her visit, the doctors commented on how quickly she was healing!

   Before being discharged, we got great news that her bone marrow aspiration came back normal along with her bronch and EGD showing no changes since her last procedures. The doctors were concerned with her cystic fibrosis liver disease (CFLD), so we scheduled an appointment with the Birmingham Liver Transplant Team to learn about the many options for Kaitlyn's liver disease.

  When Kaitlyn was discharged from the hospital in late August, a friend of ours was admitted for similar reasons.....CF exacerbation along with a high fever. As we followed her progress on Facebook, we continued to pray for Danielle and her family as she fought a hard battle. On Sept 10th, we got word that Danielle passed from this world. This was such a hard blow to us, and especially to Kaitlyn. It reminds us how fragile this life is and how detrimental a cure for this disease is. Kaitlyn was already feeling stressed about learning about a possible liver transplant, but with the knowledge of Danielle passing, it brought her to lower depths. In her times of stress and sorrow, she clings to her baby brother and rocks with him.

 Of course, this didn't only effect Kaitlyn. Both of her brothers were also worried about her and her health and often expressed their fears and sorrows for what she has to face. At that time, my husband and I decided it might be good for her and the boys if we invest in a small dog as a companion. And so, we now have sweet Hazel as an addition to our family. By the end of September, we got great reports from her ENT and Pulmonologist. Her sinuses were looking perfect and her lung function was back up to 100%! We were so excited with the great news.

    In October, Kaitlyn also had to meet with a new doctor, an Endocrinologist, when her blood sugar hit over 300. We are learning to control her blood sugar through diet, which will give us more time before she fully develops cystic fibrosis related diabetes (CFRD). In October, we also got to meet with the Liver Transplant Team. They informed us that her liver is still functioning enough not to warrant a liver transplant! She will be closely watched for signs of liver failure, but the doctors feel she is doing great for now. Kaitlyn also had the opportunity to star in her first beauty pageant, Pageant with Purpose. It was held in her honor to help raise money for cystic fibrosis. It was so nice to see Kaitlyn all smiles and crowned honor QUEEN!!!

    November just started and yet it still has already had a lot of activity for Kaitlyn. Towards the end of October, we could tell that Kaitlyn's lung function was decreasing. By the time we made it to Kaitlyn's November scheduled appt with her pulmonologist, she was having difficulty breathing regularly. In just one month, Kaitlyn's lung function went from 100% to 83% and she lost a bit of weight. Though we are sad about her being admitted, we are happy that she will be well by the time we take her to Disney World at Thanksgiving. We want her healthy for her first trip to Disney World.

 And when I asked her if she was scared to go back into the hospital so soon, she exclaimed that she was happy to go into the hospital because she would be able to breath again soon. Man, do I love this girl!


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