12/21/08 - Plan of Care!!!

Okay Everyone. Here we go!!!

Aimee and I both sat down with our cardiologist's nurse practitioner (CNP) tonight and we may have a game plan set in place to get Kayleigh's pulmonary hypertension under control and possibly a one way ticket home. Prayers are the only way through this wild adventure we are about to take, but I am more confident than ever that Kayleigh will succeed. Each task at hand must be completed successfully before the next process can begin and this is not going to be a walk in the park. I spoke last night a little bit about the JG tube that they may be putting in Kayleigh's intestines to help with her reflux/micro-aspirates. Tonight, I felt like our CNP has unlocked the door to Kayleigh's only path home. Thank God for such intelligence.

Since Kayleigh has been on two of the best medications to treat her pulmonary hypertension (O2/NO2), it is evident that it is working, but something else is keeping Kayleigh from getting those pressures down. Look at it like a wall that divides two sides...on one side is blood and the other side is lungs. For the oxygen to get in the blood, it needs to be absorbed through that wall. If that wall is damaged, then the oxygen will not get through like it is supposed to. Simple right??? Well, since we have been paying attention to one side where the O2/NO2 helps open the lung sacs to fill up with oxygen, we completely forgot about the wall where that oxygen still has to transfer through to get in the blood to oxygenate the rest of the body. Everyone just figured the sacs weren't opening, but it is the wall itself that may be causing the problem.

That problem lies within the lungs and the lung tissue where that oxygen is transferred from those sacs and in to the blood. Two main reasons that lung tissue can become damaged is too much oxygen (high vent settings) or reflux from aspirations. So at this time, they are lowering the amount of oxygen Kayleigh has to be on so her oxygen saturation can sit in the mid 80's instead of the 90's. There will be no damage to the other organs for satting lower, even if it is for long periods of time. This will reduce the oxygen in the lungs and not cause anymore damage to the lung tissue (wall). Also, by inserting the JG tube to feed Kayleigh, that will allow Kayleigh to not have any chance to aspirate her feeds to where she inhales it in to her lungs. When that happens, the stomach acids eat away the tissue in the lungs causing them more damage. Our main goal is to prevent anything from destroying what tissue she may have left so she can grow new lung tissue.

That sounds pretty easy to take care of except we all know that Kayleigh's condition right now may not be well enough to handle a procedure that involves anesthesia. It will be done at Kayleigh's bedside so we don't have to worry about transferring her to the operating room. Although, we all saw what happened when she had the cath procedure that nearly took her life right before her open heart surgery. On top of that, if the lung tissue is damaged, it will not work to transfer that oxygen in to the blood anymore as intended. We have to hope and pray that the tissue is still good.

Once the JG-tube is done, they can enter a scope in to Kayleigh's lungs to see how damaged the tissue is and if there are any narrow linings in the lung sacs. That will determine Kayleigh's prognosis and if this can be treated or if Kayleigh's lungs are damaged for good. If the tissue is fixable, they can enter a suction tube in with the scope to clear out some of the narrowed sections. The only problem right now is Kayleigh's entry way down her throat handles a 3.5 size tube and she needs to handle a 4, so her throat is too small at this point and needs to grow. The JG tube will allow us to give Kayleigh a higher calorie feeding, but delivered at a slower pace to reduce chances of bowel/digestion issues. If they send the scope down and find out her lungs are damaged for good, her body will continue grow but her lung tissues will not. That means when the body grows and demands more oxygen, her lungs won't be able to provide it for her and soon the demand will be too much. Sadly, Kayleigh is too small to have a lung transplant anytime soon.

Once we get past this stage, we will be able to determine which route to go next. The road is going to be long, but with the help of God and your prayers, we can accomplish anything together. Aimee and I are just so pleased to hear there is a game plan and we are more than blessed to be able to spend more days our precious Kayleigh.

PS: A few of you asked about Brandon and Allyson and what you could do for them. Please email me directly and we can talk more. They follow the blog too and I don't want to spoil any surprises :) Email me at: Adam@TeamFreemanProperties.com

Thank you everyone again for your support and donations through this trying time. We don't know what we would do without you. You all are a gift from God and this is going to be such a blessed Christmas!!!

God Bless,

The Freemans :)

53 comments:

Anonymous said...

God bless you Adam!! You are so articulate!! You really explain things quite well with your words!! We continue to pray and support Kayleigh and your family on this journey!! I stay up just so I can read your posts about this little angel. Ok well I have insomnia but your posts are what help me through it!! Stay strong. You have a great big cyber family praying every day. Kayleigh has a great big cyber family. We all love that girl!!

your friends from Rochester NY

The Andrews

Anonymous said...

We will continue to pray for Kayleigh. We will pray that her surgery will go smoothly and that her lung tissue is not damaged. She is a spunky little thing and she has been proof that God is not done with her yet.

Desirae said...

Hey i know you are going to have tons of comments and you might not be able to read this. But there is a movie and a book out there, that i would like yall to read or watch. Its truly amazing and makes perfect sense after you read it and understand it. I truly beleive if yall seen this and believed great things will prosper. Its called "The Secret" http://thesecret.tv/index.html
Please i promise you its a great life experience.

Stephanie said...

When my sister had pneumonia a few years ago, she went to the hospital and they gave her antibiotics and a shot of magnesium. Would this help Kayleigh heal faster?

This was Portsmouth Naval Hospital, I don't know if this treatment is common, my sister had it in 1997. I have posted/e-mailed about magnesium before because of it's relationship to pre-term birth and pre-eclampsia. So much of what Kayleigh has been through can deplete magnesium like blood transfusions, surgery, Lasix, etc...The body regulates magnesium very tightly, so deficiency does not always show up on bloodwork.

I don't want to push the issue, but when Kayleigh turned up with pneumonia, it made me think about my sister's pneumonia and the magnesium issue came up again.

I am rooting for Kayleigh and don't want her to miss out on anything that would help her get home faster.

Love and Prayers from Moyock

Anonymous said...

Email will be on its way!!!

Thank you GOD for another glorious day for Kayleigh. Please continue to give Adam and Aimee the strength to continue this heartfelt journey. Give Kayleigh the strength to handle all of the procedures she goes through. Allow her to feel all of her parents love and all of our prayers. Please continue to give the drs and nurses the strength & wisdom that they need to work YOUR miracles. Please continue to provide Allyson & Brandon with lots of understanding during this very scary journey. Provide them with love and patience as they are missing their mom, step dad and baby sister (who they cannot visit due to rsv season).

Thank you for all that YOU have provided thus far for this amazing family, and thank you for restoring my faith in mankind! It fills me with such JOY to read these comments that people are leaving this family. What a gift this is to me.

Adam-thank you for your well written updates. You write so perfectly so that we can understand in "normal" terms what Kayleigh is going through. Thank you for taking your VERY precious time to update Kayleigh's friends...we'll continue to surround her with ANGELS to guide, protect and comfort her.

GOD BLESS!

Elizabeth

Anonymous said...

YAY!!! Sounds like a plan to me!

shannon said...

I am thrilled to pieces to hear a plan of action! that is spectacular!

my preemie had/has BPD... It's no picnic.. those vents are double edged swords.. they tear up the lungs but with out them our babies wouldn't survive at all!

Maybe one day someone will be able to get the vent just right.
NICUs have come so far in the last 20 years, imagine what they will be like 20 years from now..

when I was on bedrest I used to imagine little pods filled with amniotic like fluid, with babies still attached via some form of umbilical cord... like something out of a sci fi movie.. LOL.

God bless you all! and merry christmas!

Laura said...

I'm glad to hear there's a plan. What a long way she's come in just a few days!

Anonymous said...

I will start praying for the "plan" right now!!!!
With love from Southern NH

Hayley said...

I am so glad to hear there is a plan to get Kayleigh home where she is suppose to be. If there is any precious girl that can do it I know and am confident that it is Kayleigh. I will pray that her lung tissue is not too badly damaged and can repair itself with some time. I will be thinking and praying again for her. Stay strong Kayleigh!!!

Natalie said...

Still praying for Kayleigh and a wonderful outcome, keep fighting Kayleigh!!

E said...

My heart just aches for her every time I see that little picture with her eyes finally open again. I just want her to get to GO HOME and not be hooked up to machines or poked or prodded. I know that's all y'all have dreamed of for all these long months.

I'm glad there's a game plan and we will pray that her lungs can and will heal. God is still a miracle worker! We've seen that last week now haven't we? =0)

Love from Texas!

Erica

Anthony's Mommy said...

Are they saying kayleigh has BPD now re: her lungs? Anthony had/has this. Almost all his lung tissue was scarred from being on the vent at too high a setting. Our lung specialist told us as the lungs grow new tissue grows and by the time Anthony is 8 most of his lung tissue will be healthy. It was just keeping him stable till the point that he had more healthy tissue then scarred tissue. Anthony has been on Flovent for quiet a while. This is a steriod that helps keep inflammation down in the bronc tubes and lungs. It has been our miracle med.! Why I mention this is cause I haven't heard you guys say what treatment they do for kayleigh's respiratory issues.

Thanks

Kim

lori_schott said...

I pray that Kaleigh's lungs are not to badly damaged and that the plan works to get her home!!!

Carole said...

Your story has touched so many. I pray everyday for our Champion light weight fighter, Miss Kaaaaaaayleigh Annnnne! (In booming announcer voice hee hee hee)She will make it through this. She is our little Champion!

Madame Squid said...

Still here...still praying....

Anonymous said...

Yeah kayleigh i knew you had it in you!!!! prayers for sweet girl

mommyfirst said...

I am so happy to see sweet Kayleighs eyes open again and to know there is a plan in place. This is such progress from a few days ago. I think of your sweet girl all day long. I pray for her several times a day.
Kayleigh has restored my faith and my faith in humanity. To see strangers gather around, support, and love another stranger is something to behold.
Your fight is our fight and I truly stand beside you in that hospital offering strength and support to little Kayleigh and your entire family. This little girl has touched so many lives in her few months here. I know she has so much more to do. I believe we will all see a Christmas miracle for Kayleigh.
I pray that she continues to grow strong and that her lungs are not damaged. I know she will come home to you one day soon!

Kim
South Carolina

Lauren said...

I have been following each day- I check for updates a million times a day! I am beyond delighted to know that your little baby has a light at the end of the tunnel...be it a small light, but the darkness is gone! I will continue praying and spreading your story...I am so inspired by it. Give Kayleigh kisses from our family.

Lauren
Georgia

Heather Marie said...

I am so excited to hear such good news!! Yay!! A plan is in action! So much to look forward too guys!
God is so good!

Valerie said...

Hi guys! I tried to buy a bracelet awhile back for myself and my daughter but I couldnt' do it with Paypayl, now that you have the donations set up can I also use paypal for a bracelet?

Valerie

Chriseedee said...

Continued prayer for your family and all involved with Kayleigh's care. Nana C.

Anonymous said...

God is Good!!! Kayleigh is on several prayer chains here in Maryland. Bless her heart and prayers continuing!

Chantelle said...

Sorry if this is a stupid question...but I noticed that Kayleigh was on nasal canula prior to her condition worsening. Has she ever been on CPAP? I'm not sure if she is strong enough to wean off the vent just yet, but CPAP helps keeps the lungs open and allows them to grow new lung tissue and repair damage caused by the vent and O2. She would have to be able to take all of her own breaths though. This may have already been addressed at some point, so I apologize if I missed that.

I want to add that I'm completely in awe of Kayleigh's strength and fortitude. She is an incredibly special baby!

Anonymous said...

Aimee & Adam,

I came across your blog over the weekend and it has touched my heart as a parent of twin girls born at 1 pound this past May. I have been praying for your family and especially for Kayleigh. May the Lord grant you and your family patience and strength through this journey and may God keep giving Kayleigh that strength to come home soon!!!!! Kayleigh is a fighter and I may not know her but I feel like I do and I have strong faith she will be home with you and your family!!! God Bless!!!!

Mel said...

I am so happy for you to hear that a game plan has been developed. Hope, so very powerful, now followed by action has got to feel good as Miss Kayleigh's parents!!!! It certainly does as her blog friend;).
Lord, thanks be to You for the gift of hope and the wisdom of a plan to help Miss Kayleigh. Please Lord be with your sweet angel as she undergoes any and all RX that she be calm and feel your presence. Lord,please be with her family and parents as they walk this difficult path. Lord, please be with these parents as any and all decisions come their way. Lord please be with the drs./nurses/NICU staff and guide their hands, minds, and mouths. Lord, it is You that we give the glory to for the miracle that is Kayleigh. Thank you for this beautiful little girl blessing. In Jesus's name, Amen.
Still praying in OK-M

Keri said...

Way to go Kayleigh!!! We all knew you had it in you. (and of course our prayers may have helped :-0 ). I continue to pray for you and your entire family, that you continue to have the strength to endure what ever is thrown your way!! Wishing many more good days ahead!!!

Keri, NH

hollylorec said...

Hey adam,
I'm glad that you guys have a plan now for kayleigh just take each plan and say to your self kayleigh can do it. I'm so glad that kayleigh can be here for x-mas and all the other holiday's and all her b-days she is going to have a great life with all these people you will have to buy a computer for her to chat to all of us I hope one day we could meet this ANGLE that god is letting us all have.
I hope she can get on Ellen, or oprah, I would love that.

Also you need to have extrame home make over come and do a new home for you and your family and pay of the home for good then no worries.

WEll keep planing the game kayleigh and come to the top and WIN!!!

I LOVE YOU GUYS!!!

THE LOREC FAMILY

S said...

I love a plan! I am so thankful that you guys are at the point to plan! That is great news! Keep fighting baby Kayleigh!

mrsrubly said...

PRAISING GOD THIS MORNING!! yippeee. some things have really improved. your daughter is a true christmas miracle! thank you jesus..you are awesome. i will continue that the lung tissue is as strong as it has to be plus some. i will continue to pray that the scope can go down easily and her lil throat will open and be flexiable for them to even see the tissues. merry christmas guys. your family is beautiful.

Nim said...

My sister told me to sit down and read your blog, didn't think much but 2 hrs later and lots of tears here I am writing you. I am praying and have said a lil prayer after every post til the next scroll up to see what happened next. I am praying for Kayleigh but I am praying for you and Aimee. Our youngest spent 3 weeks in the NICU and I know that is nothing compared to what you guys have been through but I know what I went through. I am praying for your family and for your and Aimee and I will keep checking on you daily.. let me know in anyway I can help!!!!! Keep your faith strong! God Bless you! Nim

Courtney said...

Yay for a game plan! This is going to be such a wonderful Christmas for your whole family! Kayleigh's going to keep fighting just like she has been :)

Courtney
Cornelius, NC

Holly said...

Such great news! I am so thankful to hear Kayleigh is progressing despite her setbacks. We are still praying. Wishing you all a Happy Holidays.

I came across your blog through another blog. I too am the parent of a micropreemie. My son weighed 1 pound 15 ounces.

Amanda McD said...

Adam, a friend told me the story of Kayleigh and sent me her link. I have spent my weekend reading from the beginning about the journey of Kayleigh. I have prayed all weekend and think about poor Kayleigh a couple times a day. I am praying that Kayleigh will continue to progress and become healthy enough to come home. I cannot wait to read the next post to see how Kayleighs day was. You and your family have touched my heart and definitely make you appreciate what you have everyday.

Leslie Jackson said...

You know... Christmas isn't all about earthly presents. Maybe this was God's early Christmas present to your family!

I'm praying for you guys! Can't wait to see pictures of her in your arms at home!

God Bless you and your family!

Merry Christmas!

Anonymous said...

So happy to hear that you guys have a plan in place, that always feels good!!

If placing a GJ tube under anesthesia is too risky, have they talked about an NJ tube? It is the same as the NG she has now, but fed into the "J" where the GJ would be surgically placed (giving the same benefits of preventing aspiration from reflux). Just a thought in case Kayleigh needs to buy a little time before going under again- they can last for quite a long time.

As always, thinking of Kayleigh and praying for more good days ahead!

Amber said...

Hello Adam and Aimee-
I am so thankful that the Nurse Practitioner and the Cardiologist have come up with a game plan. (I am so proud of my profession-I will be a nurse practitioner in a short few semesters). It truly shows God's hands working through all of these wonderful people that you have trusted with Kayleigh. God will prevail and his medicine is the best, and that is all Kayleigh needs to get over this last hurdle to be able to come home. There are thousands of people praying deligently for Kayleigh at all hours of the day and she is truly a testiment of God's healing powers. I have 100%faith in God that he will heal Kayleigh and she will be coming home soon. Trust in God with all of your heart and he will give you the strength you need and the strength Kayleigh needs to continue this amazing fight. I will continue to pray for her that she goes through these procedures without complications, her pulmonary pressures to continue to decrease, and her lung tissue to be healthy and be able to repair itself as she continues to grow into a toddler.
As I read your last post I saw you referred to the journey as a long road ahead. I thought of my favorite quote by Robert Frost so I would like to leave you with this which is a quote about how life is a journey but sometimes the road that is less traveled (even though you may get roughed up a little) always makes the biggest impressions and makes you learn the biggest life lessons.

Two roads diverged in a wood, and I -- I took the one less traveled by, and that has made all the difference.”

I think God has made Kayleigh's path bright and full of hope but the journey there has been rough. Through it all she has taught so many people about God, faith, and that life should never be taken for granted and we should all love our families and one another a little more each and every day. This is what has made all the difference and she continues to glorify God in everything she does as she fights through these battles.

God Bless,
Amber in Texas

Anonymous said...

Hello Freeman family, What a blessing Kayleigh is, she sure is a fighter. I continue to check up on her and your family and keeping you all in my thoughts and prayers. With God all things are possible!! I hope Kayleigh will be well enough to go home soon and no more complications. You all deserve the best. She sure is a beautiful girl. Wishing you all a Merry CHRISTmas and a Happy New Year. You're in my prayers.

Naomi Owata

Debbie said...

Still praying for all of you. Keep fighting precious Kayleigh and we will keep praying. We will also keep praying for Allyson and Brandon also as this is hard on them too. Keep strong as a family, worry just about each other and the rest of us will keep praying for everything else. God provides for ALL our needs.

Jamie said...

I was just directed to your blog a day ago and have been praying for Kayleigh since. What an amazing girl you have! I pray that the plan will work and that she'll grow to be able to tell you both how wonderful you are...I'm sure she already knows it.

IrishMama said...

I stumbled across your site the other day, and have been following along ever since. My heart goes out to your family. Your little girl is beautiful, and it seems like God is working a miracle.

Becky in MO

Anonymous said...

Praying for you sweet little Kayleigh. I am so glad to hear that they have a plan in place. I have no doubt you will once again prove miracles do happen!

Laurie in SD

Monica M. said...

God Bless Kayleigh and your whole family. She is such a precious little girl!! I wish you all nothing but the best and can't wait to come back and hear more and more great news about her. (Then in years check back see pictures of her playing with her brother and sister!!)

The Pitter Patter Boutique said...

My prayers are with Kayleigh and your family. I'm a new reader so I'm not caught up on everything but I get it. All the best and I wish you guys a very HAPPY Holiday season. If you need anything, let me know. :-)

Anonymous said...

But how is the pneumonia? And her lungs from it?

Lindsay Dean said...

This explanation couldn't have been said any better! And, sadly, I understood everything in it! ha Living in a hospital seems to have that effect on people!
We are such prayers warriors of Kayleigh's and just know that she will keep taking big strides ahead. Praying, that with His will, that Kayleigh will be your Christmas miracle!
Love to you all!
Suzie Dean

4 Lettre Words said...

Wow...what exciting news! I'm so glad to see that precious pic, too.

Prayers and love from Georgia!!

Anonymous said...

I want to stand up on the highest mountain and sing...Praise GOD Praise GOD...isn't GOD good? ALL THE TIME...AND all the time good is good. You know so often we get wrapped up in our own promblems and we seem to narrow our vision and only see our promblem and forget there is someone that is worse off in the world than you. Thanyou for sharing you story with the wrold...it reminds us that somebody int his world is worse off than me....I had a daugher in NICU....I know the stress you go through as I had to be put on Zanax just to get me through it.
Well take care and take care of Kayleigh...I am praying for her and all of you as well

Kristie in Alabama~~

Anonymous said...

Adam, thank you so much for teaching us so much. It seems so confusing but you explain it all so well. I hoep Kayleigh had a better day today and I will focus my prayers on her lungs! Amazing plan and God will pull her through -- I just know it!

Your amazing little girl is a true Christmas miracle! Of course you know that already!!!

CAN I SAY EVEN THOUGH TOMORROW IS JUST OVER AN HOUR AWAY --
HAPPY SIX MONTH BIRTHDAY KAYLEIGH!!!! May the next six months bring endless smiles, love, happiness, more dirty diapers than you can imagine, and snuggly cuddles and kisses!

I just love your family! I can't wait to write MERRY CHRISTMAS on Christmas Day to Kayleigh!

Have a great day tomorrow!

Karen Andwan
cincymomof4

Erin said...

My prayers and thoughts are with you and your family.

Carol Ann said...

We are so happy to hear Kayleigh is moving in the right direction! So happy! I know ya'll must feel less stressed and a little more in control knowing there is a plan. As always, we're praying for all of you. We are working on a little something for ya'll. I'll email you directly with questions. Have a wonderful Christmas. Kiss that sweet baby for us! The Nadeau Family

Karen in West Babylon, NY said...

Still praying in West Babylon NY - Every time my grandson Tayveon fusses - which at 2 months old and eating every 4 hours is fairly regularly - I say a prayer of thanks that he is healthy enough to cry, and then I say a prayer for Kayeleigh that she continue to improve to the point that the only problem you have in your life is Kayleigh fussing for her bottle, from the comfort of your HOME!

I love how you (Adam) are taking one day at a time, one step at a time, probably sometimes even one hour at a time - I can't imagine how hard this is - but you have the strength to come online every night and update everyone who is reading and praying and cares about Kayleigh and your family - and I am grateful you find a way to give the update - and even be so informative as to the details of what the plan is - some day this is going to be a great memory for you and Amy - and inspiration to Kayleigh - when she says her homework is too hard - or her practicing her piano lesson is too hard - you can pick a day from her first months of life and tell her if she could get through that she can do ANYTHING!!!! Many prayers for your family - for the doctors and nurses caring for Kayleigh, and for Kayleigh herself - that the plan continues on the right path

Anonymous said...

MERRY CHRISTMAS TO THE FREEMANS

~ Love,

Jesus!!


(I think that says it all!!!)