Can you believe the progress Kayleigh has made over the past couple days? She has been fighting so hard and doing so well! We are so very proud of her and we have no doubt in our mind that she is going to continue to make great progress and get herself out of that hospital. Kayleigh is currently satting in the mid 90's where she is supposed to be and she is down almost as far as you can go on the vent settings. Her oxygen is set at room air or just above and there is next to none when it comes to the amount of pressure being pumped through that vent tube and in to her lungs. Actually, she is breathing over the vent 99% of the time which is an awesome sign.
The scary part is the muscle/tissue in her lungs that seems to fail her when the vent tube is removed. After doing so well on the vent, the doctors proceeded to remove the vent tube (extubate) from her throat. Once they did this, somewhere in her airways decided to give out and collapse, cutting off all air supply to her lungs. Kayleigh wasn't even wheezing as her airways were shut tighter than can possibly be. The doctors decided to perform a bronchoscopy, which is where the doctors sends a very small video camera down through her nose and down her throat to figure out what is causing the airway failure. It was another procedure we were afraid for Kayleigh to have to endure, but once again (with heavy sedation) she pulled through it like a champ. The results came back quickly and there were no major issues causing the problem. That is wonderful news as we were afraid of the problem being Bronchamalasia, which takes a long time to heal and a trach would be put in place for having to be on the vent long term. The goal now is to keep an eye on the issue to see what direction it takes.
All we can do is pray that she continues to keep up this great progress and grow quickly. The doctors have administered several doses of Lasix (diuretic) to remove some of the extra fluid in and around the lungs, so she has dropped some weight. She has dropped to 6 pounds from being at 6.4 pounds several days ago. It is so amazing to see the growth that she has made in the past six months. There are times that I catch myself checking out the other babies on the way out of the NICU and saying to myself "Wow, look at how small that baby is" and remembering that Kayleigh was much smaller than most of them. This has been a long hard road and the end is no where in site yet, but we are going to keep pushing, praying and fighting as hard as we possibly can. Every single one of our family, friends and followers have been so unbelievable with the support they have given. I feel like I say that every time I post, but I truly can not say it enough, so "Thank you!!!"
Also, I want to tell everyone how lucky I am. I have the best wife in the world. It was nothing specific that she did for me, but what she silently does for me day in and day out. This is not an easy road to travel and to have her put up with my tough days, she is the strongest person I know. I wouldn't have wanted to go through this journey with anyone else by my side. She has been my rock and my shoulder to cry on. There is not a day that goes by that I don't tell her she is beautiful or that I love her more than anything in this world, but I don't say thank you enough. So sweetheart! "Thank you for being there for me through the good times and the bad. When stress takes its toll, you prove to me how much you love me by dealing with me through those rough days. You are the one who shines the light on me and lets me know everything is going to be okay. You give me hope to stay strong and keep positive. I am so deeply in love with you that I couldn't be happier with my life, even when everything else seems to be falling apart. There is no doubt our love is so strong and nothing will ever get between us. I am beyond excited to spend the rest of my life with you by my side because I know you are the best friend anyone could ever want. I love you so much!!!”
The scary part is the muscle/tissue in her lungs that seems to fail her when the vent tube is removed. After doing so well on the vent, the doctors proceeded to remove the vent tube (extubate) from her throat. Once they did this, somewhere in her airways decided to give out and collapse, cutting off all air supply to her lungs. Kayleigh wasn't even wheezing as her airways were shut tighter than can possibly be. The doctors decided to perform a bronchoscopy, which is where the doctors sends a very small video camera down through her nose and down her throat to figure out what is causing the airway failure. It was another procedure we were afraid for Kayleigh to have to endure, but once again (with heavy sedation) she pulled through it like a champ. The results came back quickly and there were no major issues causing the problem. That is wonderful news as we were afraid of the problem being Bronchamalasia, which takes a long time to heal and a trach would be put in place for having to be on the vent long term. The goal now is to keep an eye on the issue to see what direction it takes.
All we can do is pray that she continues to keep up this great progress and grow quickly. The doctors have administered several doses of Lasix (diuretic) to remove some of the extra fluid in and around the lungs, so she has dropped some weight. She has dropped to 6 pounds from being at 6.4 pounds several days ago. It is so amazing to see the growth that she has made in the past six months. There are times that I catch myself checking out the other babies on the way out of the NICU and saying to myself "Wow, look at how small that baby is" and remembering that Kayleigh was much smaller than most of them. This has been a long hard road and the end is no where in site yet, but we are going to keep pushing, praying and fighting as hard as we possibly can. Every single one of our family, friends and followers have been so unbelievable with the support they have given. I feel like I say that every time I post, but I truly can not say it enough, so "Thank you!!!"
Also, I want to tell everyone how lucky I am. I have the best wife in the world. It was nothing specific that she did for me, but what she silently does for me day in and day out. This is not an easy road to travel and to have her put up with my tough days, she is the strongest person I know. I wouldn't have wanted to go through this journey with anyone else by my side. She has been my rock and my shoulder to cry on. There is not a day that goes by that I don't tell her she is beautiful or that I love her more than anything in this world, but I don't say thank you enough. So sweetheart! "Thank you for being there for me through the good times and the bad. When stress takes its toll, you prove to me how much you love me by dealing with me through those rough days. You are the one who shines the light on me and lets me know everything is going to be okay. You give me hope to stay strong and keep positive. I am so deeply in love with you that I couldn't be happier with my life, even when everything else seems to be falling apart. There is no doubt our love is so strong and nothing will ever get between us. I am beyond excited to spend the rest of my life with you by my side because I know you are the best friend anyone could ever want. I love you so much!!!”
We just received the latest bracelet shipment and we will be sending those out shortly. Sorry for the delay, but they’re coming soon. If you haven’t sent in your photo wearing your Kayleigh bracelet, please do so we can put it on the site and add it to the scrapbook we are making for Kayleigh.
The first set of photos are awesome! This first one is from my family in Ohio. The Christmas tree they brought home was a little too big for their angel, so they decided to link all their Kayleigh bracelets to take the angels place. That is just too amazing!!!
The second set is from Ryan who has learned that when he gets a boo boo, to go in the freezer and get the icepack to make the boo boo all better. Well, on his own will, Ryan grabbed the icepack and put it on the computer to heal Kayleigh’s boo boo’s. How sweet is that!!!
Here are some more recent photos that I have received from some of our followers. Thank you all so much for sharing your photos with us and we are just so thankful to have every single one of you in our lives. Keep those prayers coming.
This is from Africa!!! AWESOME!
God Bless,
The Freemans :)
The first set of photos are awesome! This first one is from my family in Ohio. The Christmas tree they brought home was a little too big for their angel, so they decided to link all their Kayleigh bracelets to take the angels place. That is just too amazing!!!
The second set is from Ryan who has learned that when he gets a boo boo, to go in the freezer and get the icepack to make the boo boo all better. Well, on his own will, Ryan grabbed the icepack and put it on the computer to heal Kayleigh’s boo boo’s. How sweet is that!!!
Here are some more recent photos that I have received from some of our followers. Thank you all so much for sharing your photos with us and we are just so thankful to have every single one of you in our lives. Keep those prayers coming.
This is from Africa!!! AWESOME!
God Bless,
The Freemans :)
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