Kelsey might be coming Home????

As unbelievable as it sounds, Kelsey might be coming home as early as Monday. We are excited and very nervous at the same time, because she will still be on oxygen and her feeding tube. We will have to learn how to do both at home. Right now she's in a wait and see mode, and all they are doing for her is feeding and watching her oxygen level (which has been the same for some time). So, they said we could do that at home just as well. So, Andy and I will be at the hospital trying to assume full care of her over the weekend in the hospital so we can bring her home. This isn't a for sure thing yet, one of the doctors is still hesitant because of the chemo and TMD and Kelsey's still on mixed oxygen and they have to wing her to room air oxygen. They did move her feeding tube to her stomach yesterday and she tollerated it just fine. Now we are going to see if her can handle getting off continuous feeds next and slowly work our way to feeding by mouth.

This is very exciting but at the same time very scary, since we won't have any one at home to help if it don't know what to do with her. Her ascites is not getting worst, meaning she has stopped getting bigger, but it's not going down either. Her liver counts are still trending up just a little but not enough that the doctors are worried. We hope the fact that Kelsey's getting feed more fluids than ever and is still not getting bigger is a good sign but nothings shows that her liver is getting better for sure, yet.

Continue to pray Kelsey's liver will heal and pray Kelsey and Andy and I will be ready for our little girl to come home. I've prayed Kelsey will come home so much that now that's it here I don't know how to feel. I wanted her to come home completely healed, so this is weird. God works in mystious ways. He did answer my prayers just in His own way. God IS good and trust this is all part of His plan.

The heart surgery is still needed when her liver counts are better and the ascites goes down some. They want her to be in the best condition possible to have the best come from such a difficult surgery.

Thanks for all your prayers to get our baby girl home. I hope this will work, we will know more Saturday and Sunday. We keep you posted.

Patti

Nov 10, 2009

Kelsey's been doing pretty good the last several days. She has her last chemo dose tonight with no real side effects, yet. The next couple of days will be the important ones, as she will be most susceptible to infections with her white blood count expected to drop. So, praise all has been good so far and continued prayer that this treatment will work and she won't get any infection the next couple of days. We are still very concerned about her liver healing and starting to work better, asap. If it doesn't they talk like she won't make it, which is very alarming and scary to think of.

They have gotten to a point where getting an IV and drawing blood for various test is getting very difficult because most of her veins aren't good any more. So, they are going to put a PICC line in tomorrow or Thursday. They've tried before unsuccessfully, but this time Radiology is going to be doing it. Pray it works this time and that she won't get an infection with the it, either.

Because her breathing is stabilizing and there is no immediate danger, they are talking about moving Kelsey out of ICU and to the GI floor. We have mixed feelings about this. Good that they think she doesn't need the ICU support but scary because she won't have someone checking on her as much. We both feel like we will need to be with her more so she's not alone, but that means more time at the hospital for both of us and less time with Keeton.

Her belly is getting bigger but it seems a little slower. They drained 500 cc (a bottle of water) Tuesday a week ago. And although she doesn't need it at the moment, they are thinking they want to drain her before her white blood counts gets low and she's susceptible to infection from it.

One new good thing is they have been increased her feedings so she's now at 20 cc per hour. They are trying hard to get her to grow better. She seems to be doing ok but, tonight, Andy said she was spitting up a little. They are going to be watching and make sure she's still tolerating that much fluid tonight. Pray she can continue with this feeding as this is how much she needs for her size.

Because of all of this, I've been a little discouraged lately. I want to be hopeful that Kelsey will be better, but the doctors keep reminding me this treatment may not work. I keep praying and reading God's word but my heart is still a little heavy. I know I'm just really tired so that's not helping either. I really appreciate everything people are doing for Andy and I. We've had meals for us since Kelsey was born 3 months ago and it's been amazing all the people helping in so many ways. God has truly blessed us with loving family and friends and I'm very grateful and can't imagine going through all of this with out His help and everyone else's. I'm just ready for Kelsey to be healed and home.

Thanks for the prayers!!!!

Patti

Nana came to visit Kelsey girl and enjoyed holding her only granddaughter.

Molly came to visit little miss Kelsey, too.

Sleepy little baby girl.

Kelsey's 3 Months Old

Happy Birthday!!! Kelsey's 3 Months Old. She's all dolled up with bracelet, bow and ruffle socks in her cute little sweater outfit. Most of these are sweet gifts and Kelsey say thank you wonderful friends.

Here, Kelsey has her favorite little doll and another one of her favorite blankets that says "Angels are watching over me."

Sweet sleeping Kelsey. She usually still sleeps with her eyes open but sometimes they are closed when she first falls asleep.

Mama loves her sweet baby Kelsey.


Kelsey's just too cute in so many pics I can't decide which ones to use so here's another one.

What a Week!!!

Since Kelsey was moved on Monday, we've seen and talked to so many doctors that it's been exhausting. But, at the same time, exciting that so many doctors are trying to figure out what is causing Kelsey's ascites. All this to says most of them agree that Kelsey doesn't have a problem with her liver itself, but that the liver is sick because of her Transient Myeloproliferative Disorder (TMD) she's had since birth. Although it looks like the TMD is getting better the damage done to the liver is getting worst. So, Kelsey's hematologist wants to give her a low-dose chemotherapy treatment lasting five-days to see if this will help calm down her liver issues. We won't know if it will work for at least a week or two and Kelsey won't be ready for heart surgery for three week to a month. Her cardiologist and heart surgeon don't think she would make it through heart surgery at this point with her liver not working well. Kelsey still needs her heart surgery as soon as possible but will have to wait. Right now her lung pressures are good, but they need to stay good while we are waiting to see if this treatment will work. That's the other problem, this chemotherapy treatment may or may not work. If it doesn't, more than likely, Kelsey's liver will continue to get worst with no other treatment available. A thought we are trying not to think about. We are still praying for complete healing for Kelsey's liver. We know God is in control and are putting our sweet baby girl in His Hands to love and heal.

Please pray that this chemo treatment will work and that there won't be many side effects for Kelsey.

Pray also that her heart will continue to get better or at least continure to be a little stable. Oh, this last echo of her heart showed that the PDA is opening again. She seems to be doing ok with that but this is very important since we have to wait on her heart surgery.

Pray also that Kelsey will continue of grow. She hasn't grown as much this last month because of the fluid restricktions from the ascites, it's hard to give her enough food to grow well...not to mention her hearts and lungs are working so hard that she's burning a lot of caleries just to breath.

I hope all this make sense so you can best pray for our preious baby girl. I have some cute pics from her 3 month birthday I'll try to post asap. I know God is good no matter what and we are trying to patiently wait on His timing for Kelsey to get better and come home.

Patti

Keeton and little sister Kelsey

One good thing from yesterday is that Keeton got to see his little sister again. He even got to touch her little hand. He was so excited!!!! Here's some very cute pics....

Kelsey's pacifier is so big it covers her whole face.

Kelsey all ready for her second road trip.

Keeton can't take his eyes off of his baby sister.
Keeton's touching his baby sister's hand for the first time.

Keeton was so excited!!! Good pic of all the Matthews Boys, they all just adore little Kelsey.

Nov 2, 2009

Kelsey's at Children's now. Her new doctors will be working hard tomorrow and the next several days trying to figure out what is wrong and Andy and I are praying hard they will help her. It was hard leaving her tonight she wasn't feeling well with her belly as big as it has ever been. She hasn't cried much in the past but tonight she was and it was braking my heart. I know they will take good care of her but it was hard leaving her with people I didn't know. We got home after 9:00 tonight and I'm really tired, so this is short. Thank you for your continued prayers.

Patti

We're Moving Kelsey Again

Andy and I have prayed and talked about this for a while and we've decided to move Kelsey to Children's Hospital in Dallas. We are not satisfied with the diagnosis of Kelsey's liver issue (fluid retention) and want a second opinion. The only way to do that is to move her to another hospital. When we went to Medical City we were moving her to have heart surgery. But now, her liver is the more important issue and we think she would do better at Children's where they have more specialist that deal with unusual problems like Kelsey's. They just called to tell us they will be moving her today. We're not sure what's going to happen today but could really use some prayer that it all goes well. The next couple of day we hope and pray to have more answers about Kelsey. It' will probably be a hard couple of days for Kelsey and Andy and I as this new team of doctors redo test and look over her medical records. We continue to pray God will give all of us wisdom and comfort and take care of our sweet baby Kelsey.

Thanks so much for praying,

Patti