Kelsey's Kidneys

Yesterday morning, the Kidney doctors came to check on Kelsey's kidneys because she had decreased urine production and her creatinine levels were going up. He told Andy he didn't think thing were looking good for Kelsey's kidneys and that he expected her creatinine levels to go up even more by the next morning. Which would mean her kidneys were now failing. Andy told me the doctors thought her kidneys weren't looking good but he didn't tell me how bad they thought they were or that after they left he was crying over Kelsey thinking this might not get better. Andy just told me to talk to the doctors when I got up there that afternoon.


On the way to the hospital, I was feeling a little down. I usually do a lot of praying and singing with the radio to try and lift my spirits driving back and forth from the hospital. When I turned on the radio the song playing was the song "Praise you in this storm" that has been playing on my blog. Of course that just started the tears and I just wanted to ask God when was this going to end. But by the time I got to the hospital I was convinced that the kidney doctor was just one of those neg/no hope doctors and I wasn't going to think the worst yet. I was trying to hold on or better yet God was trying to give me back the hope I have in Him. I wanted to talk to Kelsey's main doctor (which I love this week...they change every week but we've been there long enough to start repeating them ), but when I got there her main doctor had already left, so I talk to the fellow that has been following Kelsey all month (he's moving up to the 12 floor ICU next month :( so we will have a new NP following Kelsey). He said the kidney doctor was very discouraging but that they had ordered some more test to verify this diagnosis and thought it would be best to wait and see if things got worst. It was a very solemn conversation and when he was talking about the kidney stuff I didn't look at him and just kept my eyes on my little Kelsey girl. Almost as if I didn't look at him, then what he was saying wasn't really true. The only positive thing was that he and the nurse both thought Kelsey was peeing a little more today. They do labs at 4:00am and 4:00pm and all of this was before her 4:00pm labs.


So, around 5:30pm they got her lab results back and her creatinine levels were down. I thought this was good but wasn't sure. Andy showed up a little after that and the fellow came by again. This time the conversation was much more happier. He was very encouraged by this and said even if the level was back up in the morning like the kidney doctor had thought, it wouldn't be as bad. If the levels were going up and down that was a much better diagnosis for the kidneys. Andy and I left and went to dinner after that a little more encouraged than that morning day.


At dinner Andy told me he was a little mad at me earlier because I didn't get that up set when he told me about the kidneys this morning. I told him I did get up set and that I was crying going up to the hospital but that I also had decided I wasn't going to let this doctor get me down and I was tired of this type of gloom and doom doctor that seem to have no hope when they talk to you. Since, everything seemed like it wasn't as bad as it was this morning he was really glad I didn't get as upset as he did. We had a good dinner and it was nice spending some time together.


On the way home another favorite song came on the radio, "What faith Can Do". It's new so I can't find it for my playlist yet but it talks about how faith can see your through impossible situations. Of course the tears flowed again but this time tears of hope. My God is the God of m


This morning, Andy called real early to find out Kelsey's creatinine level again and they went down again!!!!! God answered our prayers yet again. Andy met the kidney doctors again at 8:30am and he (the main one) said he was very surprised but glad and thought there was nothing really wrong with her kidneys. So, he wasn't coming back to check on her unless things change a lot. Although, Kelsey's kidneys are good at the moment, please pray they don't get worst because being on diuretics for a long time can damage the kidneys and she's on a really strong one at the moment because of all the fluid.


Also, since the drains were put in Kelsey hasn't pooped and x-ray showed she had a lot of gas. They gave her something to help and she finally pooped around noon today. She hasn't done another one yet and she really needs to. Her belly is still huge but now they are saying most of it is air and so she needs to stool it out.


I know this is a long update and it's all about pee and poop but don't take peeing and pooping for granted. Yesterday was a real tested our faith and I'm not sure how we did. This roller coaster ride has had a lot of ups and downs lately. I know God loves us and won't give us more than we can handle, I just wish he didn't think we could handle so much. I know God loves Kelsey more than we do and He wants the best for her and us. Our nurse told us today Kelsey heart surgeon came by to check on Kelsey (he does every day) and today all he said was "she going home" and left. And that the hope we are holding on to tonight!!!! That one day soon our baby girl will be home with us again!!!


Pray specifically that 1st Kelsey's belly continues to get smaller and the fluid issues gets a lot better and 2nd that they could really start trying to wean her off the vent. Thanks for reading all this and sorry it's was so long.



Patti

Here's the lyrics to the song "What Faith Can Do" by Kutless and you can watch the video at http://www.youtube.com/watch?v=7elxC8LXfzE

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
When you don't have a chance
When the world says you can’t
It’ll tell you that you can!

Kelsey Girl YOU CAN!!!!!

Now a Chest Drain is In

Last night they put in a second drain in Kelsey chest. Her afternoon x-ray showed a lot of fluid on her left lung and the belly drain would be able to get that fluid off very well. They don't think this drain will be in long but at this point they aren't really sure of anything with Kelsey. The drain in her belly is a temporary one...they wanted to make sure she didn't have an infection before they put in a more permanent type drain next week. Since they think this fluid issue isn't going away any time soon.

Earlier in the afternoon we got some small hope in that their plan is to try and wean her off the vent as this fluid gets off and send her home with the drain. That idea meant she might come home earlier than we thought she would. But I don't know now how long it's going to take to get enough fluid off so they can start trying to get her off the vent.

Then, today they did a ultrasound to check on her kidneys. Andy and I are thinking just what we need another organ to worry about. So far the kidney are working they said that just wanted to make sure nothing was wrong. They have also started giving her some med to help with her lymphatic system just to see if that will help. They are trying everything they can think of to help Kelsey with this fluid retention/ascites. The problem is there really isn't a smoking gun to point to as the main problem. They say it's still a lot of little things creating a really big problem for Kelsey.

Andy said her face is less puffy but her belly looked bigger this morning. Continue to pray for answers and for Kelsey to improve. The rest of the up family could use your prayers also.

Heading to the hospital to check on this kidney thing.

Patti

The Drain is Back

Kelsey's lung x-ray came back worst so they are putting the abdomen drain back in as I'm writing this. Continue to pray they can get a handle on this ascites/fluid retention.

Patti

Kelsey needs your prayers

Kelsey is getting bigger and bigger and not just in her belly. Her little face (and body) is so puffy it doesn't even look like my sweet baby girl any more. The doctors aren't sure what's causing this or how to fix it. Right now they are still hoping by not putting the drain back, her body will find the balance for dealing with this fluid retention on its own. Again I'm learning so much about how the body functions. As best as I can explain it, your blood vessels are suppose to absorb this fluid and then you pee it out. But, Kelsey is doing the opposite. Her blood vessels are leaking fluid into her body and so it's swelling up. Why is Kelsey doing the opposite???? They aren't really sure but think it's just a lot of little things working together to create this big problem. Little things like a sick liver, an inflammatory state from open heart surgery, poor nutrition from diuretics, damaged cells including her blood vessel, abnormal thyroid and several others I can't remember. Individually they wouldn't cause this much trouble but together they are causing Kelsey a lot of problems with this fluid balance. They still haven't put another drain in because that would only perpetuate the problem. They are holding off hoping this fluid balance will fix itself. If the balance of fluid pressure outside her blood vessels is greater, then hopefully she will start reabsorbing the fluid into her blood vessels and then to the kidneys to be peed out like it should.

Please pray this will work and Kelsey can start doing this on her own!!!! As long as her breathing is fine and her kidneys are fuctioning they will try and wait for Kelsey to balance this out. It just brakes my heart to see her like this. I thought she looked bad yesterday but today it's even worst. I was reminded of a verse I clung to several months ago today in a birthday card from my sweet friend Sue. Romans 15:13 "Now may the God of hope fill you with all joy and peace as you believe in him, so that you may abound in hope by the power of the Holy Spirit." Right now I have to put my hope in God and trust Him to heal my baby girl. Sometimes it easier to say than to do. I just have to getting reading it over and over.

Thanks for your prayers!!!

Patti

Kelsey's Ascites is BACK

Kelsey is driving momma and daddy (and her doctors) crazy!!!! Her lungs are still an issue but she's retaining fluid AGAIN and the doctors aren't sure why. When they started clamping her belly drain this weekend things started moving down hill very quickly with her belly, then face and now body swelling with fluid. They did an ultrasound yesterday to see if her liver was getting worst but the GI doctors ruled out the liver as the main cause and said the ascites this time isn't from her liver (not that the liver isn't completely innocent, it still isn't completely well). So why is there so much fluid???? Good question and the doctors aren't sure. Basically, Kelsey was getting use to the drain and diuretics to keep the balance of fluid retention and when they stopped helping her, her body didn't know how to handle it.

Along with the drama of the growing belly, Kelsey somehow wiggled out her second PICC line Monday. So, today they had to take her back to surgery to put in a Broviac line. Hopefully, this one will last longer!!! And the good thing about this type of IV access is they can draw labs from it and won't have to stick her little heels any more.

Also, this morning they notice on her x-ray her belly drain was coming out a little. To prevent possible leakage that could lead to an infection they had to take her belly drain out, too. Kelsey, Kelsey, Kelsey!!!! PLEASE PRAY that Kelsey will start processing this fluid on her own so they don't have to put in another drain. Meanwhile, Kelsey's lung are requiring a lot of support to keep them open. Her belly pushes up on her diaphragm and lungs. As long as she can still breath ok they don't want to put in the drain so she can have a chance to balance all this out on her own. Please pray she can do this quickly.

Andy and I are on this roller coaster ride and ready to get off!!!! We are so gratefully for all the obstacles that God has helped us with in the past and know in time this too will get better. Every day we have to pray God will help us through one more day and He always does!!! He is faithful and gives us the strength we need. He knows how much we can handle and is with us all the time. These are the things we hold on to during this time, but that doesn't mean there are moments I just want to cry!!! This song that's playing is a good one to listen to when I feel like crying. I know God holds all my tears in his hand and He love me and Kelsey and will see us through. The end of the song they quote Psalm 121 "I lift up my eyes to the hills--where does my help come from? My help comes from the Lord the maker of heaven and earth." I love that Psalm.

Keep praying Kelsey home!!!

Patti

Here's Kelsey last Wednesday, the one day we put clothes on her. It's so hard to put them on her and now I doubt they would fit over her belly. She's a cutie with or without clothes.

This is a pic of one of Kelesy's silent cries that just brake momma and daddy's heart....because of the vent she cries but no sound comes out.

A couple of nurses helped me make this cute page with Kelsey's hands and feet prints the one day we put clothes on her.

Here's a picture of her today, you can see how big her belly is and how much fluid she has on her face and upper body. Please pray this will go away, it's something Kelsey is going to have to figure out and fix on her own.

Pray for Kelsey's Lungs

Kelsey's lungs aren't improving very well and it's been a very frustrating week for all of us. The doctors are trying several different ways to try and wean Kelsey off the vent but each time her lungs get worst if they get the vent too low. They keep telling us this is going to be a slow process but Andy and I had both hoped Kelsey would be getting out of ICU soon and then home. It looks like she's a still a long way from both. Also her belly is getting bigger again. They aren't worried because they have taken her off all her diuretics, increased her feedings and are trying to close off her belly drain. It's going to take her a while to adjust to getting this fluid off herself, but as usual, her big belly isn't helping her lung issue.

At this point, I'm getting very discouraged again. I hate seeing Kelsey just lying in her bed with not much interaction. We can't really hold her or play with her. She hates the vent. tubes and cries every time they stick her little heal for labs. I'm really tired of seing my little girl crying and being helpless to comfort her. At times I feel like this has been one of the hardest weeks, yet. I know God has a plan for Kelsey and his timing is perfect but waiting and trusting is still sometimes a struggle. Continue to pray for both for me and Andy. Pray Kelsey's lungs will start improving faster so she can get off this vent. I think Keeton has picked up on mine and Andy's frustration and he's going through a frustrating period, too. We could all use some prayers of encouragement.

Thanks for continuing to check on Kelsey and the Up Family and for all your prayers.

Patti

Kesley's still on the Vent

Sorry about the lack of a recent update, I was sick over the weekend and didn't get to see Kelsey Friday or Saturday. : ( Kelsey did get her picc line Friday but the surgeon didn't like where that put it so today she had to get it moved. They had talked about taking her off the vent Saturday but her lung x-rays didn't look good and Sunday's x-ray it look even worst almost collapsed again. They have decided they are trying to get her off too fast and that's why her lungs are getting worst. So, now it might be a while before she is off the vent. She was on it for so long that her lungs are very weak. Kelsey's heart is great, now it's her lungs. Her liver counts are still getting lower but it will still a long time for the liver to heal. She still has the belly drain but it's getting less and less fluid every day. Her eyes look better and after she's out of the hospital we will follow up with the eye doctor. So, for now Kelsey just needs her lungs to get stronger and that will just take time. Hopefully, she will start growing during this time now that she not using so many calories to breathe.

Kelsey seems to be happy right now even thou she's on the vent. Yesterday and today she was happily sucking on her pacifier holding on tight to my fingers. They still have to tie down her hand to keep her from ripping out all her wires, but she doesn't seem to fight it any more.

Andy and I are still working on having patience. God's been teaching a lot about patience. We just wish He would hurry up and get this lesson over with. God's timing has always been perfect and we know Kelsey will be home with us soon. So, I'm back to listening to my "While I'm Waiting" song.

Patti