Can you tell Kayleigh doesn’t like to lay on her back anymore? Actually, she was fine for about 30 minutes, but soon wanted to be put back on her tummy. She is so picky because she used to never like being on her tummy. I guess she likes to keep us on our toes, which goes along with everything else she does or doesn’t do. Her file is going to be named the “Kayleigh’s Way” file and her WHOLE file is going to be a “case study” for other doctors to be cautious about. It will read, “Handle with care, unpredictable baby syndrome”
Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh’s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing with the pulmonary hypertension, respiratory difficulties, micro-aspirations, possibility of going to CHOP, and normal everyday care, there is bound to be some confusion here and there amongst everyone involved.
Speaking of issues, everyone knows that I don’t like to complain about the treatment we are getting because it has been practically flawless. But….and there’s a “but” in here! I received a piece of paper yesterday that explains the vaccines that Kayleigh just got. I was reading one of those sheets just after signing the approval form and it states that the vaccine is to prevent pneumonia as pneumonia is one of the deadliest infection for newborns up to five years old. So, I kept reading and this vaccine was supposed to be administered at 2 months, 4 months, and 6 months. Hmmmm!!! I think we have a problem here, don’t you??? After reading this, we asked the nurse practitioner why this hasn’t been done at the scheduled periods and the response I got was that Kayleigh wasn’t well enough. Before I about went off the deep end, I quickly reminded her that Kayleigh almost went home twice, so if she was well enough to go home, then she should have gotten these vaccines. Needless to say, the NP didn’t say anything else but that they would look in to it a little further. Our primary nurse looked all through our file (twice) and there were no records of any vaccines. It makes you wonder though, if Kayleigh would have had this vaccine, would she have been so susceptible to the pneumonia that just about took her life?
Anyhow, I’m sorry to get you all as fired up as I am but there is no room for mistakes with “our” precious Kayleigh and I need to get to the bottom of that.
Moving on…As of right now, Kayleigh’s Pepcin test that was sent off to the labs has come back confirming there ARE micro aspirates in her lungs, which are causing damage to the lung tissue. To fix this problem, they need to perform the Nissen surgery, where the doctors tack up Kayleigh’s stomach to eliminate the chance for aspirations. Our stomachs are horizontal at some places, causing acids to build up and when refluxed, they are aspirated in to the lungs. When the doctors tack the stomach up, it makes the whole stomach vertical which will then prove the law of gravity by allowing everything that enters the stomach to continue on its expected path.
While they perform this surgery under anesthesia, they will also insert a G-tube, which is a feeding tube that feeds directly to the stomach instead of having a tube down the nose anymore. This will also allow the airways to heal quicker without having another tube in there. That leads to the next surgery which is the tracheotomy. If the time that Kayleigh is on the vent for the next week or two while they perform the Nissen/ G-tube surgery to allow time for Kayleigh’s airways to recover and she can be extubated successfully, then she will not need the tracheotomy. Let’s hope and pray that she doesn’t have to get that. I heard it isn’t too bad, but after talking with the nurse about the possibility of full time home care, that will be quite an adjustment. Either way, we would make it work though!
On a really great note! Kayleigh is down to 6ppm on her Nitric Oxide, which is the lowest she has been in a long time. That goes to prove her pressures are still reactive and she could still grow out of this hypertension if she stays healthy and grow. With the doctors fearing her pressures were fixed, we were afraid she would never come off the vent and take a turn for the worse, but ALL of your prayers have worked again! Can you believe this amazing work God has done on Kayleigh? It is so evident that He is hearing all of our prayers and continuing to show us how powerful He is. Man!!! I am just so pumped up about her progress that I feel every ounce of excitement in my stomach. It feels as if I am going to burst from the inside out and I want to scream until my voice becomes horse.
Doing God’s will together!
I took the initiative to provide some website/emails of some great possibilities to spread Kayleigh’s story to reach families out there who need to hear it. Whether it is to bring them closer to God, bring their family’s closer together or just give them hope in their own journey’s. Here are a list of local news, local newspaper and some national television shows (links) that I could find for everyone to email. I have written them already, but these producers need to here it from you all. They need to know about Kayleigh and how she has touched your lives, plus it wouldn’t hurt to gain some more prayer warriors. So, if you write your quick message, copy and paste it to each link and send it, we may be able to share our story to millions and what blessing that would be. Make sure you include the blog site so they can be captivated in to learning more. Thank you all so much for your help and let’s do God’s will together. Amen!!!
Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh’s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing with the pulmonary hypertension, respiratory difficulties, micro-aspirations, possibility of going to CHOP, and normal everyday care, there is bound to be some confusion here and there amongst everyone involved.
Speaking of issues, everyone knows that I don’t like to complain about the treatment we are getting because it has been practically flawless. But….and there’s a “but” in here! I received a piece of paper yesterday that explains the vaccines that Kayleigh just got. I was reading one of those sheets just after signing the approval form and it states that the vaccine is to prevent pneumonia as pneumonia is one of the deadliest infection for newborns up to five years old. So, I kept reading and this vaccine was supposed to be administered at 2 months, 4 months, and 6 months. Hmmmm!!! I think we have a problem here, don’t you??? After reading this, we asked the nurse practitioner why this hasn’t been done at the scheduled periods and the response I got was that Kayleigh wasn’t well enough. Before I about went off the deep end, I quickly reminded her that Kayleigh almost went home twice, so if she was well enough to go home, then she should have gotten these vaccines. Needless to say, the NP didn’t say anything else but that they would look in to it a little further. Our primary nurse looked all through our file (twice) and there were no records of any vaccines. It makes you wonder though, if Kayleigh would have had this vaccine, would she have been so susceptible to the pneumonia that just about took her life?
Anyhow, I’m sorry to get you all as fired up as I am but there is no room for mistakes with “our” precious Kayleigh and I need to get to the bottom of that.
Moving on…As of right now, Kayleigh’s Pepcin test that was sent off to the labs has come back confirming there ARE micro aspirates in her lungs, which are causing damage to the lung tissue. To fix this problem, they need to perform the Nissen surgery, where the doctors tack up Kayleigh’s stomach to eliminate the chance for aspirations. Our stomachs are horizontal at some places, causing acids to build up and when refluxed, they are aspirated in to the lungs. When the doctors tack the stomach up, it makes the whole stomach vertical which will then prove the law of gravity by allowing everything that enters the stomach to continue on its expected path.
While they perform this surgery under anesthesia, they will also insert a G-tube, which is a feeding tube that feeds directly to the stomach instead of having a tube down the nose anymore. This will also allow the airways to heal quicker without having another tube in there. That leads to the next surgery which is the tracheotomy. If the time that Kayleigh is on the vent for the next week or two while they perform the Nissen/ G-tube surgery to allow time for Kayleigh’s airways to recover and she can be extubated successfully, then she will not need the tracheotomy. Let’s hope and pray that she doesn’t have to get that. I heard it isn’t too bad, but after talking with the nurse about the possibility of full time home care, that will be quite an adjustment. Either way, we would make it work though!
On a really great note! Kayleigh is down to 6ppm on her Nitric Oxide, which is the lowest she has been in a long time. That goes to prove her pressures are still reactive and she could still grow out of this hypertension if she stays healthy and grow. With the doctors fearing her pressures were fixed, we were afraid she would never come off the vent and take a turn for the worse, but ALL of your prayers have worked again! Can you believe this amazing work God has done on Kayleigh? It is so evident that He is hearing all of our prayers and continuing to show us how powerful He is. Man!!! I am just so pumped up about her progress that I feel every ounce of excitement in my stomach. It feels as if I am going to burst from the inside out and I want to scream until my voice becomes horse.
Doing God’s will together!
I took the initiative to provide some website/emails of some great possibilities to spread Kayleigh’s story to reach families out there who need to hear it. Whether it is to bring them closer to God, bring their family’s closer together or just give them hope in their own journey’s. Here are a list of local news, local newspaper and some national television shows (links) that I could find for everyone to email. I have written them already, but these producers need to here it from you all. They need to know about Kayleigh and how she has touched your lives, plus it wouldn’t hurt to gain some more prayer warriors. So, if you write your quick message, copy and paste it to each link and send it, we may be able to share our story to millions and what blessing that would be. Make sure you include the blog site so they can be captivated in to learning more. Thank you all so much for your help and let’s do God’s will together. Amen!!!
Oprah - https://www.oprah.com/ord/plugform.jsp?plugId=216
Ellen - http://ellen.warnerbros.com/show/respond/?PlugID=10
Tyra - http://tyrashow.warnerbros.com/beontheshow/show-ideas.php
Rachel Ray - http://www.rachaelrayshow.com/show-info/be-on-the-show/
Good Morning America - http://abcnews.go.com/GMA/HolidayTheme/story?id=4628201
The Today Show (email): today@nbc.com
Our Local News:
WCNC (email) - News@wcnc.com
Observer - http://www.charlotteobserver.com/contact/
WSOC - http://www.wsoctv.com/station/1928956/detail.html
Ellen - http://ellen.warnerbros.com/show/respond/?PlugID=10
Tyra - http://tyrashow.warnerbros.com/beontheshow/show-ideas.php
Rachel Ray - http://www.rachaelrayshow.com/show-info/be-on-the-show/
Good Morning America - http://abcnews.go.com/GMA/HolidayTheme/story?id=4628201
The Today Show (email): today@nbc.com
Our Local News:
WCNC (email) - News@wcnc.com
Observer - http://www.charlotteobserver.com/contact/
WSOC - http://www.wsoctv.com/station/1928956/detail.html
Thank you everyone for everything you have done for our family. We not only pray for Kayleigh to make it through this journey, but we pray that every single one of you find a purpose through Kayleigh's story. She is certainly one tough cookie, but beyond beating every obstacle in her way, she has taught so many people how tough God is too.
God Bless,
The Freemans :)
0 Comments