1/19/09 - Post Bronchoscopy Procedure

Thank you all for being patient with me while I updated my Twitter while being at the hospital, trying to not break down with all the crazy news. I went in to this procedure with full confidence that Kayleigh would not need a trach and that she would probably just come off the vent with no troubles during the procedure.

Well, it didn't happen nearly the way I wanted it to. In fact, it was worse. I am going to try to explain it as best as I can from what I know so far. As you enter the esophagus, there were two swollen bubble like processes that are called "tongues." Once the vent tube was removed, these tongues would swell up until it closed the full opening of her airway. They called this Malacia, which with a trach, medication and time, it would fix itself. Unfortunately, this was the first and smallest issue the doctor came across.

After proceeding down the throat, he came to where the airways divides and leads to the right and left lung down an airway called the bronchial tubes. There was not enough air pressure from Kayleigh's breathing to open either of these bronchial tubes. The left one was shut tighter than the right. Kayleigh would be able to blow air out, but not suck air in which would cause her to suffocate. The air pressure from the vent was pushing the air through this tightened airway and then Kayleigh could breath it out with her own pressure on the exhale.

So, now we have identified a problem and we know that pressure pushed in to her lungs will allow those bronchial tubes to open to allow air in (Great!). We also have learned that this problem "may" heal itself with growth and time and that amount of time could be years.(I can live with that!) But the problem now is deciding which device to use to help push that air in (Hmmm).

Being that this issue is going to take years for Kayleigh to grow out of, a vent ET tube is not meant for long term use as it could cause other damage in the throat. Also, when Kayleigh starts grabbing at things and realizes what is gagging her, she will extubate herself on a regular basis. Not to mention, she will never be able to go home on the vent because it takes x-rays to make sure the vent tube is inserted properly.

The second option is a trach, which I think is going to be the route they will take. The problem is, the trach needs to withstand the pressure being pushed in the lungs by the vent/respirator and only a certain trach can do this. This type of trach (which the respiratory therapist mentioned) doesn't come in Kayleigh's size. Kayleigh's tube right now is a 3.5 and the trach size is for a 4.5, and it could be a year or so before Kayleigh can get to that size due to how small she is right now. So, are we supposed to stay on the vent until she is big enough? Maybe, but we won't get those answers until Wednesday.

The doctor mentioned there is a stint they could put in the bronchial tubes, but the stint can not be placed in the right one because of where the airway opening is that goes to the lung. Plus, the doctor mentioned that doing this procedure has a high failure rate. That didn't give me a nice feeling in my stomach, but before I could even react to that, the "World Renown" specialist said he has never seen an issue like this before, and in such bad shape (on top of that). He wants to speak with his associate who he has worked with for many years, but the way he seemed to not give me the conclusive answers I was looking for, it almost made me feel that he was dodging my questions maybe because he was baffled with such a unique situation. As a professional in my field, I know when a situation is beyond my thought process when I have to say, "Hey, I just don't have any answers right now, but I need to think about it and consult with me team."

I don't know about you, but that scares me! Although, I look at the whole picture and this must be another thing Kayleigh is going to just shock the world with. She is going to make this such a situation where no one is going to understand how she overcame yet another obstacle that was supposed to be too big for her. She has done it several times before and she is going to do it again. I am just amazed at how many things one child can deal with in a short amount of time. This has got to be a world record of some sort.

All we can do is continue to hope and pray that we get the answers we need to prepare Kayleigh to overcome this problem. We know she is one tough cookie and she can handle anything placed in her path. God is certainly in control here and we need Him to bless our child with another miracle to show people the power of prayer and trusting in God is what will bring Kayleigh through this.

Thank you so much for those who sent in photos. The bracelets should be arriving soon or have already arrived, so I look forward to seeing your photos for the scrap book. Thank you everyone who has offered to help us with the blog makeover. We have picked a company who has offered to do it for free and is also going to help us do some other really cool ideas. I am looking forward to sharing our new blog look and new ideas soon.

Thank you all for being there for us through the good times and the bad. We could not have made it through this without your support. You give us great questions to ask the physicians and your prayers are unbelievable. God Bless every single one of you out there and thank you for sharing in our journey with us. Sorry Kayleigh is giving you all high blood pressure too :)


God Bless,

The Freemans :)

55 comments:

jag said...

Praying for the wisdom the docs need to make the best decision(s) for Kayleigh.

Jennifer in NM said...

Kayleigh you are going to give me a heart attack! But yet I find so much strength in you and it amazes me. You are going to overcome this without a doubt. Just keep growing little one.

Aimee and Adam, I am praying that the docs can find an "out of the box" answer. Sometimes the most logical things aren't always the best things, sometimes we have to do the illogical things that wouldn't make much sense that work, I am hoping for something like that. I will continue to pray for your sweet angel.

By the way I absolutely love twitter because when my nerves are shot I know that any second my phone should be telling me that I have an update from Kayleigh.

With much love and prayers,
Jenn

Jennifer in NM said...

Oh, my best friend and I were talking and we were saying how big Kayleigh looks and in the photos her color and everything looks so good. I absolutley love the pic of her holding the ring, that is just precious.

Robin from Duvall, WA said...

Adam, thanks for posting tonight. I was hoping that you would so we can all know excatly what to pray for. You and Aimee keep you heads up high. Kayleigh is so strong and always surpises you. God has his arms around that sweet baby girl.

Pattybee said...

I know God will continue to watch over your precious baby. I am sorry the procedure showed more challenges, but now you and the Doctors know what you are dealing with. I will continue to pray for Kayleigh, and for the Doctors to make the best decisions possible to help her heal.

Shari said...

You sure did have a lot to process today. I have been praying and will continue. That Kayleigh gets stronger and can overcome this and that the Lord give the Drs. wisdom as they treat her and make decisions regarding her life.

britt said...

Kayleigh, is such a trooper!
she has been put through so much and look at her!I'm praying for Kayleigh and the Doctors to make the right decision for percious Kayleigh.I will be praying for ya'll for patience.Yall are an amazing family, and I cannot wait to get my bracelet!!!!!I'm waiting and looking in the mail!!

God Bless,
Britt

Jennifer said...

She is totally giving me high BP but sooooo worth it!!!!

Sarah said...

Ugh...Not exactly the update I was wanting to find on here this morning. Prayer is a more powerful than anything so we will just keep on praying and God can change this whole situation and give the doctor's plenty of wisdom on what to do. Hang in there...she just didn't want to let you down and make this too easy on you guys!

Cindy said...

Lifting you up in prayers.

Hope said...

I'm sorry you're daughter has malacia. My daughter does also. I have a few blogs that I follow where the babies have it and are trached/vented, but they are doing great! One of them crawls all over, pullng her tubes with her.

It's temporary! I know it's scary. ((Hugs!!)) I wish I could hug you, I know you need it.

Anonymous said...

I am so sorry you didn't get the news you wanted, we too were in the same position. I posted before about my daughter being an ex 25 weeker. I would ask them to look into different trachs. My daughter came home with a 3.5 neo bivona trach (philly flex). She also came home on the LTV ventilator. Infact she is still on it. She was treated at CHOP. I know doctors are the experts, but sometimes hosptials get "stuck" into they way they do things. Your daugters issues are not exactly like my daughters but very simmilar in every time they extubated her she could breathe out, but not move the air into her lungs that she needed. Ontop of her bad lungs she had some subglotic stenosis. I really hope you can get some more answers and they figure out a way to get her home to you. It will be the best place for her to grow.
You are all in our prayers

Anonymous said...

Well that isn't the post I was hoping to read this morning but it surely could have been a lot worse. With God and the doctors an answer, the right answer, will come! I will pray for the right answer and for Kayleigh to continue to grow!
With love from Southern NH

Emily said...

I'm so sorry the bronch didn't give you the answers you were hoping for. I'm surprised at what they're saying about the trach as there are many different brands/types and there are even little ones I know of who've had custom trachs made specifically for their needs. My daughter was fit for a 3.5 Neo Shiley but because of the high pressures needed to ventilator her and keep her lungs open they had to give her a larger trach (4.0) that was a very tight fit so that there was no air pressure that could leak out around the trach.

Good luck to you guys. You remain in our prayers.

aimee gillespie said...

Continuing to pray for Kayleigh, your family, and the doctors to figure out how to best treat her.

Blessings,
Aimee Gillespie, MI

Anonymous said...

Sending more prayers and love.



Carol H.
Irmo, SC

Mandy said...

I"m so sorry you're not getting news that sounds good.
I know what it's like to have the expert docs tell you that they haven't seen this before. The PICU docs that took care of my son had 50+ years experience between them and they told us, "We've never seent this". The pulm docs and PICU docs had so many meetings over Grady to "put their heads together". Grady's name was known through the PT's, RT's, and docs/nurses because he was such an unusual case. It's so hard when the docs don't have answers for you or they aren't answers you want to hear.
PRaying for you all!!

Anonymous said...

Let's stand firm and believe in His word....No weapon formed against us shall prosper! God is totally in control and we have to keep believing. He has brought Kayleigh through so much and He will bring her through this. We keep praying and believing in God for a miracle for little Kayleigh!
Praying in New Braunfels, Tx.

Jaci said...

Thanks for the update. I will keep praying for you and your family.

Anonymous said...

Sorry for the unsettling news. We, too, had a situation with our daughter that was so unique that the experts had not seen it before either. We made the difficult decision to have our daughter moved from our local hospital to Cincinnati Children's Hospital. We had to uproot our entire family for several months, but it was so worth it. When you are at a world class children's hospital that is filled with world renowned experts you will have access to info and answers faster than you can imagine. You can always come back to your hometown hospital afterwards. We struggled with our decision, but within hours of our transfer, we knew that we made the right decision. Good luck with your decision. You've already been through so much and your instincts have help to guide you along the way. Go with your gut and that will be the right decision for you and your family. I hope there is a light at the end of your tunnel soon. I wish for lots of comfort and happiness for you and Kayleigh.
xoxoxoxox
from North Florida

Anonymous said...

Praying that the Doc find the answers you need. Adam and Aimee your strength continues to amaze me..your whole family is a great inspiration! Stay strong little peanut you have many praying for you!

Laurie in SD

Erica said...

I haven't commented in awhile but just wanted to let you all know I am still here!! And I ALWAYS have sweet Kayleigh in our prayers!! God Bless!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Brittani said...

Reading these comments make me cry, I know kayleigh is a very strong little girl! But the trach has its positives and its negatives. My grandmother was put on that and she couldnt talk, so I had to learn how to read mouths really fast. It might be temporary, but it all depends on how her body reacts to it also, my grandmother was on the trach for 8 months, and then one day she coughed ( and she was at home ) and it fell out. There wasnt anything to do, and her stats were ok too. My nana passed away January 30th 2007. It was her time to go. So what Im trying to say is that it all depends on how kayleigh reacts to it.
Its going to be tough! And my prayers are with you!!

Anonymous said...

Check with CHOP...I think they may be able to have access to other types/sizes of trach's...I know they have been able to before. It is worth at least a phone call. In my prayers....

mrsrubly said...

poor Kayleigh! just another bump in the road..however, GOD is in control and we will prayer even harder for the docs and med staff working on her. we will pray that they find answers results that are the best for her healing, growth, strength. may god bless you cookie! hang in there sweetie.

mrsrubly said...

poor Kayleigh! just another bump in the road..however, GOD is in control and we will prayer even harder for the docs and med staff working on her. we will pray that they find answers results that are the best for her healing, growth, strength. may god bless you cookie! hang in there sweetie.

mrsrubly said...

poor Kayleigh! just another bump in the road..however, GOD is in control and we will prayer even harder for the docs and med staff working on her. we will pray that they find answers results that are the best for her healing, growth, strength. may god bless you cookie! hang in there sweetie.

The Pirsein Family said...

Will keep continuing to pray for Kayleigh & your family.

Penny said...

Praying that God once again astounds everyone and little Kayleigh makes the way for an answer. Praying for wisdom of the Drs. to find the solution that will not only keep her here but also help her to thrive!

Val said...

Thank you for posting all of the Twitter updates and for the detailed update on your blog. I look forward to your new look when it comes.

I'm always thinking about Sweet Kayleigh and praying for her. She's going to come bouncing over this bump in the road like she has all the others. Just know that I am thinking about your family constantly and saying prayers.

Amber said...

I know it is disappointing to hear news that you were not really hoping for, but it is far better than not having any news about the situation. God is in control and we have to trust that he will open another door or lead the doctors/nurses down a new path that will provide Kayleigh with the treatment she needs. I definitely agree with some of the other posts about checking with CHOP or some other hospitals about a tracheostomy that would be just right for Kayleigh to grow and get better. I am not saying a trach is easy, but it is far better than long-term ventilator treatment. I am praying for God to give you and Aimee the strength you need to get through this, also to give Kayleigh strength to jump over this hurdle and continue down her road to victory. God has His arms around Kayleigh and will help Kayleigh find a way to again shock the medical community and for so many to understand the power of prayer and God's love. Keep the faith and trust that God will lead everyone down the path that will get Kayleigh home soon.

Always Praying,
Amber

Anonymous said...

It sounds like your long journey is leading to a fork in the road. There are people and circumstances that come into our lives to serve a purpose at that moment in time. Sometimes, it is okay to simply say, "Thank You" and move on. There are many signs here that point to answers that may be elsewhere. Your doctors and nurses have served their mission thus far. However, there may be others out there to carry the torch and offer new options, more expertise, etc. It is just one opinion, however, it has been on my mind all day and it just seems like many people and many signs are pointing elsewhere. God Bless You and Kayleigh and the staff who is serving her now. And God Bless anyone who has yet to meet you and Kayleigh.

Anonymous said...

Aimee,

Oh honey. I am sorry you hit this fork in the road. I'm hoping to give you some hope here (but I remember so many trying to help by relaying their stories and I would think, "Thank you, but this situation is just a little bit different." - Wren was trached when he was 7 months old (after the continual round robin of trying to wean him off of the ET tube and C-PAP) - He had a cuffed bivona (because of the wierd trach size) and was vent dependant for 2 1/2 years. They had anticipated him being on the vent for 10 years minimum and didn't know if the trach would ever come out. When he was 2 1/2, we found one of the best ENT's in the upper mid-west and he ended up doing an LTR (upper tracheal reconstruction) using a rib graft. - PLUS, the pulminologist that we saw that worked closely with this ENT took one look at Wren and said, "There is no reason this little boy needs to be on the vent still." (Again, we had been given a more dim outlook from our previous pulminologist - but not blaming them! They were very good!) 2 months later he was off of the vent with some aggressive weaning. I think the team approach will be a very good one for Kayleigh! (More minds, more brainstorming) :-) We did not, however, deal much with bronchial problems - Wren's malasia (I still can't spell that word) was in the upper airway. We have some minor differences - but how your road is so very close to the one we traveled! I know we are strangers at heart - but sometimes it helps to have someone who has gone before you...just to know that it can be done, and to ask if you ever have questions. Please don't hesitate! erin.eccles@mnsu.edu God bless! e r i n e c c l e s

Anonymous said...

Prayers for our princess

Ande said...

Praying For You! You should join Cole's Foundation, I can help, if you like.

Ande Malinowski age 13

www.colesfoundation.com
C.O.L.E. Prayer Team!

Anonymous said...

I've been following your story for several weeks, but this is my first comment. I just wanted to tell you Dr. cotton put tubes in my son's ears and he is amazing - one of the best around from what I read about him. I hope he can give your Dr. some ideas!!

4 Lettre Words said...

Praying that the answer becomes clear.

Kristie said...

Praying this is just a small bump in the road. Don't let the doctors intimidate you. Ask questions till you get an answer or untill you understand.

Kiss Kayleigh for me and tell her my sweet 1 year old Rebecca and her mommy is praying for her.

Kristie

michelle said...

I know Dr. Cotton. He works on one of my sons. He IS the best.
praying for Kayleigh
hebron Ky

Sara said...

I am sorry that you didn't get the news you had hoped for. It sounds very scary, but Kayleigh has proved she can take these scary moments head on!
My prayers are still with you all-you seem to handle this with incredible grace. God is watching over and taking care of all of you.

Leigh Anne said...

The Bible says,"Fear Not." I just think God is using Kayleigh and your family to write an incredible story of faith, hope, and love.

Crystal said...

Continuing to pray for your family...
I also forwarded your website to my brother-in-law. He does a lot of I.T. work and has started and run websites in the past. Hopefully, I will hear back from him soon. I'm pretty sure he'd be able to handle it for little/no cost.

Anonymous said...

I just want you to know that I am so amazed by your story. I have told so many people about your precious baby girl and your being able to Glorify God through all of the ups and downs you have been through. I am and will continue to keep you all in my prayers for God to continue to perform miracles for this precious baby girl.
Lisa from Texas

MamaJessie said...

TWO WORDS...

SECOND OPINION!

Seriously, you need to check out another hospital/surgeon/specialist at this point. Try CHOP or DUKE. Both have top notch NICU units. Kayleigh deserves the best treatment! And, yes there are trachs out there in 3.5 size that handle vent pressures. Perhaps your current hospital doesn't have the experience with them, so pleeease go elsewhere that can handle Kayleigh's special condition. She needs all the advantages on her side at this point. We keep praying for a miracle!

adrianna york said...

I wish you my best to you Kayleigh I hope you get better soon. I hope the doctor's know what to do for you to make you better. You are in God hand's now. I will keep you in my thought's and prayer's
From Kim and family

bri said...

I am continually praying for you all! Blessings...

Let's see God move again,Kayleigh! You are moving mountains honey!

mommyandthethreeboys said...

always in my thoughts and prayers....Amber (Las vegas)

Anonymous said...

Cincinnati Children's is an excellent facility - top notch. We had our child transferred there from a decent hospital after our doctors started consulting with them. We figured it would be best to be there in person. The transfer (via life flight) was intense, but went very smoothly. Within a day we received more info than we had in months at our previous hospital. Plus, they have an incredible amount of support therapies - ot, pt, st, etc. And once we got all of the info/consults/ surgeries we needed, we came back home. They have an incredible Ronald Mc Donald house right across the street and they will take excellent care of you. It's such a tough decision, but you've already been through so much. Good luck with this difficult journey. Look up Cincy children's website and also look at their link to ronald mc donald house.

Kaden and Angel Ava's mommy said...

First of all, I am sorry to hear all of the news. I know that it can be hard to hear.

I am not sure if you have visited our site or not, but we have a four year old son who needed a trach and home vent as well because of the bronchial malacia. He was 6 months old when he had the surgery for the trach. He has needed the vent ever since, but has outgrown the bronchial malacia, I would say around the time he was three. We have been attempting to get him off of the vent and he has been doing well and I have hope that he will come off.

I was a little confused about why they would not be able to put Kayleigh on the vent with the trach. I have met several families with little ones who require a trach and vent, and I guess I just don't understand why they couldn't put her on a vent (working towards a home vent) with a trach but they can intubate her. I know I do not know you guys personally, but it frustrates me because I want you to go home soon with her. I, myself want to ask the doctors questions : ).

I just went back and read what the RT said again. I am curious to know what type of trach she is talking about. Right now our son has a Bivona (I think that is the spelling). I wish I could remember the size he started out with, although I am sure that it was not as small.

I wish I could help you guys more with things. I wish I knew more about smaller trachs and vents. Again, although I have never met you all I have a special place in my heart for your family. It really does frustrate me and make me wonder why they are saying what they are saying. If you have ANY questions or need anything PLEASE let me know. I would love to help whatever way I can.

www.kadenboeckman.blogspot.com

I have several other sites on my page whose families also have a child with a trach and home vent that you can visit as well. I am sure that they would be happy to answer any questions you might have.

You guys are always in my thoughts and prayers.

Amy

Kate said...

I'm so sorry the news isn't quite what you were hoping for. But Kayleigh is obviously a very determined little girl, and she'll overcome this obstacle too.

I wanted to chime in too with the others who aren't sure why there's worry about not having a trach the right size. We currently have a 3.5 air cuffed Bivona flextend (custom), which we use with our LTV home vent. We even have a 3.0 w/cuff just in case for some reason we can't get the 3.5 in during a change! So they certainly make very small trach sizes. Hopefully the doctors will get all that figured out soon.

Rose Haven said...

Oh sweetie, we're continuing to pray for Kayleigh and the entire family, the nurses, the Doctors for great insight in treating this condition.

Praying also for peace.

~Blessings,
Jan & Tom

We're updating our Blog Prayer List.

Katie Anderson said...

God is the Great Physician, and He alone will show us all once again how awesome He truly is. Kayleigh is here for a reason and you have followed the will of our Lord by continually through all of your struggels, trials, ups and down's allowing the world to see Him through you. This takes such a strong fmily to do this, and our God will reward you for this, and has as you have seen by continually working miracles with Kayleigh. Our bracelest arrived last night and we took pictures. I will email them to you today. Please know that you are always in our prayers and George is tugging on my arm asking me to tell you that he loves Kayleigh (He can finally say her name" too.

In HIS Grip,

Katie, Steve, George & Sidney

Jamie said...

Aimee and Adam,

I am a mother to a daughter born at 28 weeks with her own set of struggles but I am also a wife to an ENT. I was talking to him about Kayleigh's situation and who the physicians are that are consulting over her current situation. He promised me that you are in good hands with Dr. Parsons and Dr. Cotton. As you know she is also in good hands with God. We are praying and thinking of you.

Lindsay Dean said...

Praying that God will hear all of us and continue to help pull Kayleigh through. Our hearts are with you every minute!
Love, Suzie

Denise in CA said...

I am sorry for the not such great news but it doesn't worry me because I know Kayleigh is going to pull through and be ok. She is so strong. She looks great in her recent photos. I pray for you all everyday. My daughter Aimee now won't let me get on the computer before letting her she Kayleigh first. :) We need to order bracelets!! I will do that now.

Hang in there. You have one strong cookie and great doctors. I will be praying everything will be ok. Hey they did not think they had tubes small enough to intubation at birth right - I hope my memory is correct - and look now almost 7 month later. They will find a way to do what they need to do for her and everything will be fine. I feel it!

(((HUGS))) to you all.

Denise in CA