The three spoons of jello is still down!

Yesterday I was telling you how she would be able to start a clear liquid diet after 9:00 yesterday.  Well, she has some water and she sucked on a Popsicle for a bit.  After about 45 mins, Kasi was in a ton of pain and had extreme nausea again.  This was an awful blow to her last night.  She just couldn't get comfortable.  She tried every which way and it ended with some dry heaving and three meds to get her over the pain.  It was not a fun experience as you can imagine and we didn't know what today would bring.  We thought her numbers would go up and we would be back to the beginning today.  Much to our surprise that was not the case.  Today Kasi could still do clears and her numbers did not go up.  We are very thankful for this!!  It is a praise of ours for sure!
Right now it is 8:40 pm and Kasi is just starting to feel a little funny.  She is getting some meds to try and stay ahead of it tonight.  Hopefully that works!  We are praying it does and tomorrow will be an even better day with maybe a little more jello!  She had about 1/3 of a jello cup today and about 6 oz of apple juice.  Notice that I didn't say 1/3 of a cup, I said 1/3 of a jello cup and we all know they are not big.  Just to make sure we get a good perspective on the slow process we are in.  We did talk to the Dr.s this afternoon again and they are hopeful that she might be able to go home by next weekend.  She has to be eating 3 good meals and drinking at least 1000cc's or 1 liter.  It is hard to believe that we will have been here for a month.  Crazy!
A lot of things have been brought to our attention here though.  People and their struggles, more than just physical needs.  I feel for families who not only can't be together, there are families that can't have either parent up here most of the time because of work.  Not that they can't take off, but they can't afford to take off.  It breaks my heart and reminds me of all the blessings we have.  God has created our family and brought us all together for His perfect purpose! 
Today we praise him once again for His greatness!  We see Him!  So, that is my request from all of you.  You have prayed many things on our behalf, but praise our Father for all His goodness to us is number one! 
Be Blessed!

Angio is done!

Today Kasi's angiogram was finally done.  We are very excited about this because this is a sign of the turn around for her.  She is still lying flat and only has 1 or 2 more hours to do so.  She is kind of excited to have it over too.  Relief today came in two great things.  First, her surgical sight looks great inside of her!  There are still small narrowing to her belly and there is a narrowing just past her surgical sight, but it is looking great!  The narrowing is so small compared to the one that she had before it shouldn't bother her at all.  Over all we are really happy with the news.  We are not sure what Dr. Stanley's opinion is on it yet.  I am sure he will be happy with the patch though. 
Second, we were told that at 9:00 tonight Kasi will be able to start some clear liquids.  She is going to start with some water and having about three swallows every 15 mins.  If that goes well, she might even have some apple juice before bed.  How exciting!  We are not going to push it though because it is night time and we both want to sleep.  No room for feeling sick or being sick for that matter.  We are praying that doesn't happen, and being smart helps.
What a great day of progress today.  We are looking up and praising God for taking care of Kasi through everything today.  She is doing amazing.  She doesn't have any pain from the procedure, but her back hurts from lying flat.  That we can handle!  When the doctor came to talk to us after her procedure he said, "oh, by the way, Kasi says 'Hi'."  Too funny!  She was already awake ready to go. 
It is time to tend to her once again, I just wanted to tell all the praises of the day!
Thank you for taking time to pray!

Sunday Nov. 28

Here I am watching Dirty Jobs with Kasi, Ron, and Aubree.  Sitting chilling out as if we were home, but missing the boys like CRAZY!  Ben was going to come up here today, but he has a little cold and Nathan was going to Grandpa and Grandma DeRoo's and that was a better offer all of a sudden.  He doesn't really like the long ride up here, although he loves to see Kasi.  It was a good choice for him to stay though since he has a little cold. 
Kasi is hanging out with her numbers not going to the point in which she can eat, but lower than they were.  She will be able to start clear liquids when they are under 100, and they are currently at 123 and 105.  Last week at this time they were at 165 and 154, so she is making progress.  The doctors really feel that by Wednesday she will be able to have some clear liquids.  Kasi is thinking she will be able to go home NEXT week sometime, I am still hopeful for this coming weekend.  She might be a little more realistic than I am right now, but I am hopeful.   I have so much Christmas shopping to do and it is only going to be done a little bit at a time because I am not going to be able to leave her for long periods of time.  Yes, there will be people there, but there are somethings that only a mom can do for a 14 year old girl. 
Tomorrow she will be having her angiogram.  They will be giving her more fluids tonight to protect her kidneys for tomorrow.  This also causes her to "go" more often all night and tomorrow.  Well, tomorrow she will have to remain flat for 6-8 hours so that makes it hard for her because she will need a lot of help because she will remain in bed.  Once more something she has to be subject to that would make a lot of people uncomfortable.  Kasi, well, she is used to these things and I am too now, so I will take care of ALL her needs.  I wouldn't have it any other way though.  The sense of compassion I have has grown while being up here, knowing some of these kiddos don't have moms or loving people to help take care of their every need like that.  I would do it 100 times over.  In fact being here this long makes me want to volunteer at DeVos, but in my spare time of course. 
The angiogram will answer a lot of questions for the doctors and we are very excited to see what her aorta actually looks like now after surgery.  Plus they are going to get a good look at blood flow to her belly and kidneys too.  All stuff we are so curious to see how it is moving.  They will also being doing a study on her for a while too.  Imagine that.  She is so different then other cases, even the way the test results on her, they are opposite of what they "normally" are.  So, they are going to use her case to learn and research once again.  It is pretty cool to know that she is not going through all of this for no reason.  It will help others in the future.
So, today we rest, and wait for numbers.  Tomorrow she will be put under again, and have a procedure.  Our week will be looking up from then.  We have been waiting for this angio to happen, so we are happy it is finally here. 

Friday...day 23

I can hardly imagine that today is the 23rd night spent here at U of M.  Yesterday, was an amazing evening for me just to be with all of the kiddos, and for the first time in a while feel the blessing of being a mom of 4.  I always feel blessed to be the mom of four, but yesterday being together for the first time in 3 weeks was a great reminder of the incredible family God has brought together.  Perfectly according to His plan.  Each child so unique and special it was overwhelming for me just to love on each of them.  Kasi and I both felt a little sad as they walked away and for the first time I saw tears in Kasi's eyes, and it was just because she wanted to go home and be all together again.  We know that will be soon and we know that God is not a God of time, we are thankful for each moment we do have.
Today the day after Thanksgiving we found ourselves giving thanks again.  Kasi's numbers went down quite a bit and we are sooo thankful.  She has still been struggling with her belly working properly, but if her numbers go down like they did today, she will be able to start some clear sips tomorrow.  This is a huge step and will take patience again because once she has sips they will keep an eye on her levels to see what they do.  If they keep going down and get to normal levels, we will be able to move on to all clears and then full liquid.  If all goes well with that, full "normal" diet.  This process will take days, just keep that in mind, and it has not started, but it is the way things will go if they could go perfectly.  Also, Kasi will be having an angiogram on Monday IF she can get on clears by Sunday.  After her angiogram she will be finishing up her recovery from a slow tummy and she will only be able to go when she is off TPN and her PICC line is out.  Yes, some people go home with those, but because of risk of infection and the fact that infection would settle into her patch it is something that is not an option to go home on.  We totally agree with this choice, we want her to go home completely free from all this "stuff" of the hospital. 
Kasi and I have been visited by awesome friends up here and today was no different.  We are blessed with people who love us and challenge us.  I am reminded daily how incredible God's strength is in Kasi.  So many times I talk about how strong Kasi is, but even she would say that it is God's strength in her.  I have heard a lot in my life that God will never give you more that you can handle, but really I find more peace and joy in the fact that God's Grace is sufficient for us.  His strength is made perfect in our weakness.  It is not about the strength that we might some how have, it is all about who God is to us in the middle of the storm.  We know that He fights for us all we need to do is be still.  Trust. Believe. Show others the strength of God in us which is because of His love for us.  It all comes back to that, His love poured out for us, His Spirit in us, and us fully and completely relying on Him.
We are doing good  up here.  I don't know if I can stress that enough.  People are remarking about our smiles and the joy that we have.  I know God's purpose was for us to be here.  We have met so many people and the doctors are starting to remark to Kasi about how remarkable she is.  One doctor even told Dr. Stanley in front of Kasi how incredible her attitude is and has been.  Even they can see a difference.  We have more opportunities to tell them that our difference is because of God!  They are seeing it which is a great thing to hear and know, God will open that door for us to say something as well. 
God is good!!
Thank you for all of your faithful prayers and being before the throne of our Father saying our names.  We are so blessed!

Thanksgiving eve....

There are many ways to look at tomorrow.  A person could be upset that we are in a hospital and not home yet.  We could be pouting about God not answering our prayers the way we would like.  OR we can be up here, share the Joy in the fact that Kasi is alive, well, and feeling okay.  We can be on purpose in our walks tomorrow sharing the joy that we have with those who are feeling a little down for being here on Thanksgiving.  We can love on our whole family, together, even if it is up here in the hospital.  We still have our whole family together.  We can simply celebrate life!!  The fact that the boys birth mom blessed us by choosing life for Ben and Nathan, for a life like Aubree's who blesses us with her humor and amazing heart, and for the continued life of Kasi, who just survived a huge surgery in which she had to fight to live, breathe, and well still fighting to eat.  We know that Thanksgiving is more than the food on the table, it is about being together.  And home, well, my home it is coming to me tomorrow and everyone will be together.  Once again I say to all of you, hug and kiss all of your kids.  Show them all the love the Father has blessed us with to GIVE!  Yes, to give.  Part of His free gift to us and the most important part of life.  God's Love.
Be blessed on this Thanksgiving!

Kutless - Everything I Need

Day 20

I can hardly believe that 20 days ago we were admitted into U of M and now here we are looking at 20 days of nothing to eat.  You know what even amazes me more is the fact that Kasi is pretty strong and doing really well considering everything going on inside of her.  She can only have morphine which is a strong drug, yes, but I have heard that most people have more than that when they have pancreatitus.  I know that numbers are subject to size of the person and her numbers are not super high, but they did go up over the past 24 hours too.  As long as she is on her meds she is walking around and doing what she can.  Most of her day though she in bed trying to get comfy.  She is about 96 lbs now and that is tiny for her.  I am waiting for her to start going up instead of down, but the doctors said that it might not happen until she eats for real.  I am trying to piece all of this together, mostly because there is nothing else to do all day, and you know I know more about pancreatitus than I ever cared to.  The biggest thing I do know is that what they say online, is not true to every situation.  Online it says it usually lasts for 3-7 days.  Well, that is not really true.  It is subject to what it is a result of.  In Kasi's case it is because of trauma.  So, we will wait, and she will have tests, and we will wait some more.  We are praying though that this does get better by next week so she can have her angiogram then.  Home will be right around the corner if that happens. 
I would say that is what we need up here, but that is not all.  We need prayers for safety in travel for our family who is coming up on Thursday.  Patience for Nathan and Ben.  Peace as they will have to return home and I will have to stay here.  And then, to put everything in perspective, there are 3 families that I know of now, that are facing their newborn baby's first major heart surgeries in the next day or two.  They were flown here over the past few days and now are in the beginning process of a long journey, as we know.  My prayer is for them to seek God through it all.  Everyone up here needs prayers, we are having random people stop in our room now and it is great to hear their stories.  There is one little baby girl a couple of doors down that cries and cries, and I just want to take her and snuggle her all night long.  There was a little boy about 3 in a crib with no one in the room just crying and complaining.  Kasi and I went for our walk yesterday and played a little peek-a-boo with him through the window just for a smile.  He was in isolation so we couldn't do more...bummer.  These are the things we need to remember and pray for this Thanksgiving.  And make sure you look at all of your kids and are extremely thankful for every breath that they take. 
Thank you Lord for loving us so much that you have spared us, saved us, and fill us so with so much joy, peace, love, and faith that nothing can move us.  Praise Him!!

a better day....

Today was a better day than yesterday!  It is so good to report that because yesterday Kasi just felt yuck.  I wouldn't say that today is one of the best days she had, but it was better than yesterday.  Kasi's hemoglobin remains low so she is pale and tired.  She even noticed her coloring was "off".  Also, she is noticing that she is getting kind of bony.  I am not sure what she weighs today, but she doesn't have much to give anymore. 
We talked with the surgeon today, and Kasi always loves to hear from him, NOT. (she actually really likes him)  He is a great guy and very personable, but also very real when talking about what happened in the OR.  Kasi just said to him, "that's gross".  For me, very interesting as long as I don't put it with Kasi's body.  Sometimes I am able to do that, and at other times it hits me what she actually has gone through.  For your information and to put it very lightly, they basically had everything inside her body, out.  Not quite everything, but close.  Her lungs of course stayed in but they deflated the left lung, and the rest we won't talk about.  It is no surprise though that she has pancreatitus after talking to him.  Today he said he had to kind of fold it in half, at that point Kasi covered her face, and then he said to her, "what, it's kind of like a filet of fish and I had it folded in half".  We were laughing at Kasi, but when he left, Kasi said I will never look at fish the same. 
All of this to say we once again are going to wait on her angiogram, which was supposed to happen tomorrow, much to our surprise and now we are looking at sometime next week.  Her pancreas levels are too high yet to start food, but as soon as they drop below 100 we will start sips again.  If they go up, we stop and try again in a couple of days.  This will continue until we have success!  As of right now, nothing and nothing for a while.  Unless her levels drop suddenly, we will have patience in this process.  Kasi is doing amazing with the thought of no food for a while yet.  She doesn't like it, but she really doesn't like the pain and nausea that she feels.  It is over whelming at times and she just curls up in a ball on her bed and trys to sleep.  She does get some relief through meds, but not always.  That is why she will not push the issue of food.  She knows that it would hurt like crazy if her belly wasn't ready and she started eating. 
I know a lot of you read this and think it must be awful.  I want to tell you that God's grace is so big that we continue to smile up here and know that this is only for a time.  We know that we are here for a reason and we will rejoice in our journey because we know God is right here with us.  His glory was not left in the PICU, it is here among us now too.  He is working in her and around her.  We have had good talks and have shared bits of faith with lots of people.  God is good and I have shared that with many people, and the story continues up here.  New babies are coming in all the time with Congenital Heart Disease, something we have been a part of for a very long time.  It is all new to families and it is a hard reality to sink into, with no choice.  The choice comes with how we handle life's challenges, here in this room, we take one day at a time.  We know that God grace is sufficient and His mercy is new every morning. 
He will NEVER leave us.....

Sunday a day of rest

Today was exactly that, a day of rest.  It was a long day for Kasi only because she really didn't feel good all day.  I really can't say she was in a lot of pain, but she was in pain at times, and then nauseated.  It was all around a bla day.  She was on meds for all of the above, and they helped, but they also made her tired.  She was/is low on fluids so they are giving her more IV fluids and her blood pressure dropped today to 90/50.  They really want her BP to stay between 100 - 130 on top.  It was a little on the low side and that is why she is getting some extra fluid.  She is being cycled down on her TPN too.  That doesn't mean she will be getting less, it just means that they will make it more "full" and she will have it run in over 18 hours instead of 24.  This is a great thing because hopefully we will be able to get our pass on Thanksgiving.  She will need to have a better day than today though and that is something we are praying for.  The levels that they check for her pancreas have gone up instead of down in the last 24 hours and that is most-likely the cause of her not feeling so well today. 
Kasi's attitude has always been good through this whole thing, but she seems a little "done" today and I can't blame her.  She needs strength physically and she is not getting that through her TPN.  I believe the doctors are going to be adding things to her TPN to help with her tummy and to help her maintain her weight.  I am going to love watching her eat her first real meal, I might actually cry.  Seriously, she is getting so skinny I told the doctors I was concerned about it and you know they did agree.  We will see what they can do for her.  It is day 17 with nothing to eat.  I feel awful for her.  It will be a big step for her when it is actually time to eat. 
Pray that all goes well this week and we don't have anymore set backs.  I really miss the family being together.  I also really need to have Nathan in my arms again.  It is so hard being away from them all, but he needs me the most!  Well, Ben too, but he understands more and we can Skype.  It will be a long process yet, but hopefully on the last leg of the journey up here.  Today was a down day, but tomorrow is a new day.  And you know what, I will rejoice and be glad in it.  I know that every day is a gift from God and that gives all the reason to smile.

a productive Saturday

It is hard to believe it is Saturday today.  It doesn't seem possible that tomorrow starts another week, and this week being the week of Thanksgiving.  We have so much to be thankful for and I am reminded of that daily.  Some would think that in the hospital you are reminded of all the suffering and sadness, but I can say it is also a place of Hope.  We have shared smiles and joy with so many, and I am thankful for that.  For people being able to come into a room and be cheered up instead of the down side of being here.  Kasi and I usually have people laughing or at least smiling when they leave which is a gift for them.  And believe me we are being filled with laughter too by some people who work here and share their gift with us.  And example of the joy Kasi shares, she was taken on a stretcher to have a ultrasound of her kidneys and on the way back the transport guy said to her, "if you keep that smile on your face you know it will stay that way" as he smiled and laughed down the hall.  He noticed that it was already stuck.  Kasi smiles at everyone as they come into the room.  It is great to see.
We learned a little bit about what is going on inside her today.  Her surgeon came down to talk to us and he thinks they have everything figured out now about why she can't eat.  They put her on NPO because it is looking like her pancreas is inflamed.  It is also called pancreatitus.  The way that they treat this is no food or drink and they are adding fluids through her IV to try and flush this out.  One thing we also learned it that it takes a long time to get over.  We are already 2 weeks into this, but it sometimes takes a month to heal and that is with the "normal" surgery like she didn't have.  Yep, I said didn't have, Kasi's surgery was of course more extensive than that "normal" so we are not sure how long with will take.  We do know that she is getting her minimal substance through her TPN to keep her healthy, but not to get her healthy.  She is low on her hemoglobin which causes her to be really tired fast.  That will not improve until she gets to eating real foods. 
Our outlook looks like this.  I is not probable that we get out of here by Thanksgiving.  I am hoping we are able to get a 4 hour pass and get out of here for a bit.  If that is the case, I am thinking we will invite ourselves to my cousins house for Thanksgiving....Thank you Ryan and Melissa!
We are in the waiting mode with this whole thing.  We ask for prayers for her pancreas to heal and for the time to fly by.  I also ask that you pray for our whole family as this is becoming a long time away from each other.  We are a family that loves to be with each other and this is super hard to be apart. 
Kasi's spirit's are up, in fact she told me this isn't the worst thing in the world.  That is very true.  She also said to me that she is just really happy that her surgery went so well and if this is all she has to deal with, that is okay.  Once again, amazed by her.  If some of you were to see her you would notice that she has lost weight and is very pale, but she wears that smile which for me is the biggest blessing ever.  She could be so mad, sad, and frustrated, but she isn't any of those things.  Her doctor even said to her, he wouldn't be taking this as good as she is. 
We know that God's plan is perfect and the joy that He is giving us up here that we can share with others is a miracle.  Seriously, Kasi's attitude and laughter is contagious.  We were also informed that there are a couple of babies that were born with a heart defect and having surgery here soon.  We have not seen them yet, but we are looking and watching to be able to maybe encourage them as they begin their journey in this life as a heart family.  Life has changed and has many ups and downs, but knowing who is in control gives us strength for our tomorrows and peace for today. 
Thank you for faithfully reading these posts, it means so much to know that you are praying and seeking our Father, mentioning Kasi's name before His throne.  She is a strong young woman, who currently is in a lot of pain.  So, I am going to tuck her in, pray with her and go to sleep for the night!
Be Blessed!

another day

November 19.  Seriously, this is the day I had in my head to be home.  In fact I put on our "plan of care" spot on the board that I wanted to be home by Thanksgiving.  Well, here we are and I am sad to say at this point it seems pretty impossible to be home by Thanksgiving.  Kasi's tummy just doesn't seem to want to work.  She is trying and doing everything she can, but it is just not working.  The doctors are going to give her until Monday to try and start slowly eating something, but if she is not eating enough by Monday they will do an upper GI to check her belly and it's function.  This is what Kasi said to me.  Mom put it out every where that my stomach needs to start to work.  Have everyone pray and pray for my stomach. 
Her attitude is still great.  She is being funny, laughing and making others laugh.  Everyone now knows when she doesn't feel good because she doesn't wear that smile.  She will smile, but she doesn't have it on her whole face.  Seems crazy I know, but for those who know her really well totally understand that. 
I apologize for such a short update this time, everything seems so up in the air right now.  I will update more tomorrow when I get some more information on where her tummy is at and her other organs. 
Right now, we are praying for her belly!!

We just keep fight the good fight, sharing a light and smile with all those we can around here.  We have met "friends" up here.  Imagine that, and we have nurses hanging out in our room too.  It is pretty funny! 

a good day??

Here we are at the end of another day at U of M.  I really am starting to feel them all blend in.  Today started out with Kasi really having great news and being able to get her tube out of her nose.  This was/is awesome for her.  It feels so much better with that thing out.  She was also given the freedom to actually have something in her mouth and swallow for the first time.  She was told she could go on a clear liquid diet too!  We were so excited, and at the same time Kasi was very nervous.  She has a few bites of jello and then she had a drink of sprite.  She started out with apple juice, but after a bit that didn't taste good anymore.  Kasi did really great with eating only a very small amount and eating really slowly.  She also started to feel "funny" after her little lunch.  About 3 tablespoons full (both drink and jello) over a 1/2 hour.  We put her lunch away for her thinking she might be wanting something later.  Well, dinner time came and she felt a little yucky and we thought maybe she was just feeling hungry.  She tried a sip or two of broth and had a couple of bites of jello thinking that would help her tummy feel better.  She paced herself again and this time her belly told her to stop.  About 5 minutes after she started, she ended up seeing all of her food again.  From the whole day, not just the few bites this evening.  I feel so bad for her, she started to cry and asked "do I have to have the tube put back in?"  This is her biggest fear right now.  It was so great to have it out that she is really feeling better with it out, but getting that back in would devastate her.  I am thinking it will just be a process and that tomorrow we will do things even slower.  I am not sure what slower looks like, but we will find away.  Now, she has a belly pain which she just can't seem to kick.  The morphine has been started for the pain and hopefully she will be able to have a restful night.  Beside still getting woke up at 1:00 and 5:00 for breathing treatments and her bathroom trips. 
As for the white blood cells.  They were a little higher again today.  We are not totally sure what is going on with that because they have her on 3 antibiotics to cover anything she might have.  It seems to not be working because they are still high.  It was explained to us by one doctor today that these white blood cells might just be "late for the fight".  He said that when her body called for them to kick in a fight they were not ready so now when they are ready they showed up and the fight is over.  I am not sure what the vascular team will say about his thought on this, but if they are okay with his thought process maybe they will do her angiogram before they are at normal numbers.  We will see, I am not sure how communication works up here yet.  I am not sure if I will ever totally understand all of that.  We are a unique case and how they all communicate on her case is kind of confusing. I will know more in the morning.
The lung issue seems to be getting better.  They didn't do a chest Xray today, but they listen to her and are amazed at how good she sounds now.  This is a great feeling for her!  She smiles every time they mention it. 
Here is our goal, we would really like to be home for Thanksgiving.  I know it seems crazy to think we could be here in a week yet, but as slow as things move it would be a GREAT thing to accomplish.  We are praying for her to have her angiogram the beginning of next week.  Like Monday or Tuesday, so we could have our day of recovery and come home.  If you could join us in that prayer that would be awesome! 
We know that God's timing is perfect though and if there is one more person we need to share the light with, then we will be faithful with that too.  But hopefully we are at the end of our journey here and can move it back home.
When I asked Kasi just now how she felt about the whole day, she said, "it was a good day".  So, even though her belly isn't tolerating food yet, she still feels like she is having a good day and that is what matters.

Wednesday...two weeks later.

Here we are two weeks after we have been admitted.  What a long haul and at the same time with everything that has happened in the last two weeks it has flown.  It is because my brain is still in this "Kasi is recovering from surgery" place.  Every night we wake up many times and that makes the nights kind of blend into the days. 
Tonight we skyped home and that was hard for me to see the kiddos and my arms ached a little to hold Nathan again.  He needs his mommy, but he is in good hands with my mom and dad.  It was good to hear all of their school stories and stuff of life.  We are a family that is used to sitting down at the end of the day around a dinner table and share what has happened in that day.  I am really missing that.  All of the goofy stuff of Ben and all of the serious conversations with Aubree.  Ok, the not so serious ones too because she is a funny funny girl!  At the same time, Kasi and I are really bonding again up here.  Not that we have ever been "not bonded" but we have a different relationship than most 14 year olds and their moms.  We still get into little battles, but really we appreciate each other, and I don't think that usually happens until kids are much older.  I am blessed to have that now.
Kasi had a really good day today and I want to put her requests on here as well as her devotional verse for today.  These are the first things that she has lead with emotionally up here so I believe it is important to her heart so I will share.
First, her request is for her lung to start inflating.  She is going through some vigorous RT to open this up.  It is okay, but it does hurt her incision and her back.  It is for a good cause, because it is super important that her lung re inflates of course!  Also, for this tube to come out of her nose.  It goes to her belly and tomorrow will be day 14 without food or drink.  She is kind of sick of it, but she never complains.  She is nervous about getting it out because of the risk of her belly not being ready and then having to have it put back in.  She has heard that it wasn't pleasant for that to happen.  Since she has been struggling with this for so long, she is worried that her belly won't be ready.  Please pray that when it comes out it stays out.  I really believe that everything is ready, but Kasi has to believe that too. 
Now for Kasi's devotional for today.  She showed me tonight what it was because it was very meaningful for her.  I love this!!

Isaiah 25:1
O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.
Kasi once again can see and knows God faithfulness to her.  She knows He has done marvelous things, that is why she has peace.  She is God's child, of course He will care for her. 


Now to the "stuff" of being up here.  Kasi's left lung is still diminished and her lower lung still down.  She is working hard on it.  Her white count still up, but lower than yesterday.  She found out today that she is allergic to a med she was on and she was getting hot flashes and flushes.  They discontinued that.  When I start posting about an angiogram, that is when we are getting to the home stretch.  She has to have her lung up, white count down, and tube out before they think about doing one.  We have to have an angiogram before we go home.  We are hoping we are home before Thanksgiving!

this is the air i breathe by hillsongs with lyrics

the day after.....all the prayers go up!

I am really excited to write this update because everything we were "worried about" and praying about we have results on.  First, her lung seems to be okay.  She is not in any pain and last night every time the respiratory therapist would come into the room she would look at her sats, listen, and see that Kasi was doing fine.  She wasn't on any oxygen either.  It was such a good thing because she choose not to wake Kasi up then either.  YAY!  This morning they checked her white count and it was still up so they did do a procedure to pull some of the fluid out of her pelvis.  This fluid showed no signs of infection which is great news, they are going to do a culture on the fluid to see if it grows anything though.  Really, it is great news that nothing showed up. 
Here is my take on the last few hours.  Okay, I know it has been long than a "few" hours, but we are on hospital time remember.  Everything blends into each other. 
Kasi was brought before our God with these major issues that were hitting us right in the face.  People started praying and God gave us this verse Exodus 14:14 "The Lord will fight for you, you only need to be still".  This was given through a couple of means.  First I follow a blog called Bowensheart and that was posted as a comment on his wall and it struck me and I have been thinking on that for a bit.  Along with that someone asked me about suffering as they watch their dad suffer with cancer and as I reflected on that as I have in the past Be Still and know that I am God came to mind.  These two things I have been thinking and praying on.  Well, last night in the middle of my heart getting a little anxious a friend texted me Ex. 14:14.  "The Lord will fight for you; you need only to be still".  Then came that peace that passes all understanding.  I don't need to fight, I have a bunch of pray warriors out there fighting for Kasi, pleading before the throne, we need to be still and you know as I am being still, I am knowing that He is God.  There is nothing and no one bigger or greater.  God, the creator of all things says to me, Be still and know that I AM GOD. 
So, last night as I tucked her in bed I prayed over her a new prayer, that the very breath of God that fills our very being and that created us from dust breath into her lung air, God's air.  Also, prayed that the fighting going on inside her body be taken under control by the only One who is in her, around her, before her, and beside her.  Then I kissed her good-night and we slept.  The RT came in and checked on her and what we thought was going to be a long night because of working with her turned out to be a night in which she decided to not do a thing.  She sounded clear, and her O2 level was up.  This was the first time since we have been here that her O2 level has stayed up all night without going on oxygen.  Praise the Lord!  Of course that added joy to my day.  Kasi feels great after a good rest last night. 
About this fluid in her pelvis.  I am picturing a bunch of God's little workers, working and warring it inside Kasi's body.  This too gives me peace because, He is GOD.  There is no one else beside Him.  I will wait to see what the "official" results are when the doctors come down here and talk to us. In the last hour she has been taken off suction and now put back on.  I am not sure they even know what to do with everything that is going on.  Her surgeon came down and said, you are supposed to be home right now.  We just smile, and wish we were.  It is God's timing though and He is the victor in all of this.  We will continue to praise Him with every part of our being.  And thank Him for every breath we take. 
Thank you for praying.....God has heard you and has answered!  Take time to do a "happy dance" before our God!  He is an awesome God and He sure reigns!
I will end with this, put the emphasis on the word in CAPS,
Be still and KNOW that I am God
BE STILL and know that I am God
Be still and know that I AM GOD.......
God's peace to you!

BIG prayer request

I must say, this is going to be a short update but one of the biggest prayer requests since surgery. 
Kasi's left lung lower lobe has collapsed and she will be working on that all night to get it back up.  This is going to be a hard process for her but the reason it is so hard is that she has a lot of fluid in her pelvis.  They have been watching her blood count and it has gone up again today so they did a CT scan and found all of this out.  She is a strong, strong girl and has fought so much already, she needs to put on her God strong armor and keep herself safe and protected and FREE! 
I believe her blood count has gone up again since this morning, so we will be having a draw of fluid out of her pelvis tonight and that will get processed to see if bacteria grows.  We need to pray against bacteria growing!  If it does show up, all the doctor said tonight is that we would be having a serious talk.  That in itself tells us a lot.  We don't want to have that talk. 
As I was reminded in a comment today, The Lord our God goes with us where ever we go.  I also know He is the Great Physician!  It is really hard to watch Kasi go through this, BUT, she not only amazes me, but she is amazing all the doctors and nurses here with her strength.  Sometimes though, she is so strong they think she is doing great when really she is fighting her body and what she feels.  Crazy girl!  She is doing her best and so am I!  Ron is up here now and we will surround her with our love and support the best we can.  And you know she can feel that.  Like she said today, I like watching a movie with my mom and my dad, as we both sat by her one on each side.  We love this child that God has given us with all of our heart.  Her physical pain and her suffering is like someone taking my heart out of my chest and crushing it.  My tears flow tonight with all of this.  Even through them we know, it will be okay.  Kasi even said, it will be okay.  Sometimes I wonder who is strong for who, then I realize God is strong for us both. 
If I haven't said this before....please be fervently praying for Kasi.  I know you all have already, this is something big.  I want to tackle it offensively.....
May her pelvis be cleared in Jesus name and may NO bacteria live inside of Kasi!  She is God's daughter and only HE can love her more...

A long Sunday

Here it is our second Sunday at U of M.  It seems like last week was so far away and at the same time all the days blend together.  Today for Kasi and I started at midnight.  Kasi was given meds to help her tummy decide to work.  I must say, they kicked in a lot of stuff in her.  I am happy to report, she did pass that gas!  I have never seen such an excited face as the one I saw at 4:00 am.  Kasi was so happy, she just looked at me and said,"I farted".  We both wanted to do a happy dance.  I know it seems so hard to understand and you might even think it sounds funny, but it is so real.  It is a sign of her belly really working the correct way.  We were both so happy, but it was a long night of her tummy working over time.  When morning broke I even took a little nap in the room while my mom and dad took care of her here.  My dad was happy to even be able to snuggle her too.  Kasi was just as happy about that too. 
Kasi has said some amazing things to me today, and I have to say I am so blessed to have her.  The things every mom wants and even longs to hear, my sweet baby girl has said to me.  She thanks me for taking such good care of her, and for loving her so much.  I am the one who is blessed that is for sure.  Now once again the nurses on this floor are the ones saying how much they love Kasi and they are starting to "fight" over taking care of her.  Let me tell you she is not easy to take care of either, but her personality and grace makes them want to.  It is a desire not a "have to". 
Today, during the day hours, were full of family and friends.  It was great to see Ben and Aubree up here although very hard to see them go and  sink myself back into reality of being here.  I know it has not been a super long time, I have been down that road, but home still seems so far off.  Kasi is ready too, she just wants to smell home.  Which she did today when Aubree took something from home to her.  She is loving it. 
Medically Kasi has had a good day.  They took her PCA away, that is her pain pump, and they are giving her morphine every 4 hours as needed.  This was Kasi's choice actually.  She has had two doses of it today and her pain is extreme when she has it.  She also was able to take sips of water today.  That started with a cup of water with ice in it and then the nurse came in for her to take her aspirin by mouth with about two swallows in a cup.  She was so excited to actually swallow something.  They took her NG off suction and put it to drain in a bag.  This was going great for most of the day until this evening when Kasi got really sick.  She threw up a ton of the fluid that usually drains from her tube and a ton of it went into the bag.  So, after that we figured out that her tummy still is not ready for anything.  Tomorrow is another day, and we will try with ice chips tomorrow for a while and see what happens from there.  I am asking for prayers for Kasi to be able to get water.  She had those few ounces today and she loved it!  She was so excited, but at the end of the day when her tummy rejected it, she felt defeated.  And that is when her pain hit her too.  She is caring a lot of water on her back and her chest and belly are starting to hurt with out the continuous morphine.  Kasi is a very strong young girl and she handles all of this with a strength that I can't explain.  That is what people see.  In fact people come into our room and they can't believe that she is 14, they see her and think she is 18.  She is wearing herself with maturity.  God is giving her peace and she needs peace, especially at times when she doesn't understand. 
I should also tell you that her while blood count was up again today so we are starting all over again with cultures, urine tests, and she had a chest X-ray.  The problem is, doctors order it, but they don't tell us anything on a Sunday.  It will be interesting in the morning when we talk to them again. 
Here is my request, we knew this was going to be a long road, and that is the road we are on.  We are trying to be patient, but at the same time we just want to go home.  So, my prayer is this, pray that Kasi's body heals with a speedy recovery.  Help us to be "smart" not to rush things, but to rely on the doctors and nurses in taking care of her.  Help them to be the ones to see her healing quickly! 
We are blessed beyond the curse and His promise will endure!!!  We will rest in the fact that not only will God do something, He already is.....

A good day...phew

So excited to report that today was such a good day.  I want you all to know that we are being so well taken care of and last night after a crazy "not so good" day, today ends with a smile.  God is so good, all of the things I pray for are here and now.  Peace, Joy, His presence, His healing, His love!  All of those things we can never be separated from are right here right now for our taking and today, we took another piece of Jesus.  I was able to gain another little boy to pray for up here.  He comes from a "rough" place and his sister and I had the opportunity to talk and I told her I would pray for her 10 year old brother.  I also saw Bowen's mom today with a BIG smile on her face.  A reflection of God at work that is for sure.  Having Joy in the journey and showing God's love is key. 
Kasi got her PICC line in today.  It went very smoothly, Kasi did great!  Me, well, not so good.  I have really low blood pressure and with a mask on and listening to them talk I almost passed out, twice!  I knew the symptoms so I left the room and left Kasi's side which was awful.  But I came back to see her with a little smile on her face, she knows me so well.  Today when asked what she needs, she said, I just need my mom.  That is the type of day we have had.  Full of love for each other, talks about God's goodness, and people to pray for and things to rejoice. 
As I tuck her in tonight we will talk about who God is, but we will reflect on who He has been so far in our journey up here at U of M.  I love this child of His who I can talk about this stuff with. 
Praising God from whom ALL blessings flow!
Jodi
Also excited to see my little Ben and see Aubree tomorrow.  My heart is full!  Still missing my little Nathan....

Before The Morning - Josh Wilson - Worship Video w-lyrics

Friday...day 10

So, last week Wednesday we were admitted, Thursday surgery, and here we are on Friday 10 days later.  It is hard for me to believe where we are at and what today has brought. 
After last night and the excitement of actually feeling like we were making progress and getting this tube out, well, we found out that it was not as good as we thought.  It was crazy, but because of Kasi's NG tube putting out so much "stuff" from her tummy they know that her stomach is NOT working yet.  Everything from last night was because of her antibiotics that she is on.  We were kind of sad about that this morning, but then when Kasi started throwing up, or should I say, dry heaving, it became overwhelming.  This NG tube is supposed to keep her from feeling sick, but she is still feeling sick.  It could be from her morphine, but she is on a low dose and it gets less and less everyday.  She started to walk and now it seems like it is harder to walk because I have to unplug her NG tube and as soon as I take it off suction it seems to cause her tummy to be upset.  We still suffer through it, but it is getting really hard for Kasi.  I am so proud of her!!  I look at her and she is completely pale, sunk in eyes, with water weight hanging around on her in weird places.  But she plugs away at each day forcing herself to get up, walk, sit up all while feeling like puking with a nasty tube down her nose and an IV pole full of pumps going into her. 
We found out that this could be her life for a week or weeks.  The reason why is because her bowels were manipulated so much in surgery and cut off from all blood flow for such a long time that they are stunned.  They might be this way for weeks.  We will have an angiogram on Tuesday and they will look at all of her vascular blood flow and her repair.  We are praying that her body heals and that we can endure with grace.  Kasi and I have had a talk today about what this might look like for us for a time.  She understood and knows that we can't change something we are in the middle of, and we have no way to do so, even if we wanted to.  So it is a matter of attitude of each day.  Excepting what is and having patience to plug away and heal.  We will continue to pray for healing of her belly and for gas to pass.  We will continue to rejoice that her feet are pink and warm.  We know that reflects her whole body getting the blood it needs now to survive.  We will pray against infection in every part of her body.  Tomorrow she gets a PICC line added.  This has risk, risk of infection and Kasi's veins and vessels are extremely hard to get into.  So, tonight we pray that her veins and vessels open up to what they need and keep out everything that would not be good.  She is loved by many, but loved so much by our Father.  I look at her right now and it is as if she is curled up in His arms resting.  He holds her, even if I can't.  Although she has burrowed into me as best she can a few times through out the day.  She tries to get as close as she can and I have spent many hours rubbing her back, legs, head, and hands.  I look at her in her quiet moments with tears running down my face.  I am so full of pride for her, and hurt for her as well.  I am proud of how strong she is, and I hurt for her because of all this that she has to go through.  I am the one who does the "it isn't fair", but she NEVER has. 
I think that sums up my requests, praises, and updates on this beautiful child of God.  I am privileged to be her mom, and honored to take care of her.  Pray for me to keep up my strength, like I have said before, we are God strong!  We know that everything will be okay.  It will, because no one or nothing can separate us from our Father's love.  And that.....is enough.
Love to all!

we are moved!

Well, here we are on the floor and out of the PICU.  I am glad that we don't have the ICU status anymore, but the care we now get is a little less.  Okay a lot less.  Kasi still have a lot of meds that are getting pushed through her IV's and she still can't eat.  She has her NG tube which was not being nice to her at all today and they have had to flush it many many times.  She did pass some gas!!!!  Yes very happy to report that, and she is in more pain because of it.  Kasi has decided to not push her pain button because morphine could slow her belly down.  She has pushed it now and is sleeping, she is exhausted. 
Tomorrow it is all up to me to get her going for a walk, or two.  I have taken her to the bathroom and to do that I have to unhook everything and let me tell you I am getting pretty good with an NG tube now.  I know how they thing works and how to hook it all up.  My biggest thing is keeping everything untangled.  I am getting much better at that.  I told Kasi that tomorrow we will look at how I will have to give her a "bath" here on the floor. 
Kasi also has a lot of fluid on her still.  I can see it in her back and tummy.  It actually bulges in places and we kind of laugh at it.  She is still draining out of her chest tube "hole".  That too is kind of funny because she is draining so much that they, we, me, would have to change her so many times that she was getting funny skin because of the tape.  So, last night in the PICU they crazy night nurses, well, they put a poop bag on her side.  Let me tell you, it is perfect!!!  Now we just drain the bag =)  It sounds funny, but it looks as if that is what it was made for.  As for her fever, she seems to be done with it for the most part.  She does get "warm" but no real fever today.  Her cultures are negative right now and that is great news.  I am pretty sure that they will remain that way.  Her white count is getting back down to normal too.  They put her on antibiotics right away yesterday and she seems to be over that hump. 
We are seeing a lot of good things and we are thankful for that.  They will be doing an angiogram at the beginning of next week.  Personally, I want to leave to go right after that, but we will see.  This place is not DeVos in the quiet and family friendly way, but of course all of the specialist are here.  I have heard more often that Dr. Stanley is the best in the world at this type of surgery so we are happy he is in MI.  We will push through the rest and I will be Kasi's number one advocate!
Keep praying for healing and for her pain to go away completely.  She is very weak, but stronger than most.  She is getting praise from all the doctors and nurses because of how well she is doing.  They are amazed at her fight against the fluid on her lungs too.  It was/is amazing to see God's strength in her.  We are keeping our focus and rejoicing in the victories! 
This is becoming very hard on the rest of the family though.  Just keep the boys in prayer!  Aubree too, but she is a little older to understand.  Ben was crying to me on the phone yesterday and just wants us home.  Ron went home today so it is a little more "normal".  That makes it hard on everyone.  Peace at home is what Kasi and I pray at night, so if you can help us in that prayer we would love it.  We will try to rest here again tonight. 
Thank you for your faithful prayers! 
God is giving strength and they are being answered.  I believe she is going to do this quicker than we thought before.  She is God strong!
Jodi
PS....we had a member of the softball, swimming, and football team come in our room and sign a hat for Kasi.  We told the football player to win, he is John # 49.  And of course the rest of the talk was softball....hehehe...she plays 1st base and I know we have watched her play.  Fun!  So, Aubree has a hat!

God is with us.

The LORD is the everlasting God,
the Creator of the ends of the earth.
... He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
-Isaiah 40:28-29
 
Because when I am weak, I am strong....God strong!
Thank you for all of your prayers today.  I am just going to give you a little update on the rest of our day.
It was a yo-yo day today.  We have had ups and downs all day.  I have been praying for many things today and I thought the fact that Kasi needs to pass gas was the biggest.  Well, it turns out that was one of many things to pray for and against.  I am happy to report that Kasi is resting comfortably in bed right now, in a different PICU room, still not eating, but giving me a smile once again.  This says a lot about her.  She has been through so much today and everyday really.  She can't eat, which I have told you, but she has to walk.  Today once again she spiked a little fever out of now where, but she insisted on walking anyway.  She knows in order to get her tummy moving she needs to walk, and in order to walk, she can't be sleepy so that means less meds.  Well, you know what happens then she gets hurting.  I know they want her to keep up on her pain but there are very few meds that she can take because of her surgery.  So, she is dealing and at night, starting tonight, they are going to turn up her pain meds so hopefully she can sleep through the night.  I am not sure about who all God is waking up in the middle of the night, but that is for real!  My pager goes crazy and it is at the exact time that we need prayers.  Kasi has been waking up with awful pain and it starts at around 3:00 am and last for a couple hours.  It is miserable, but last night while we were dealing with this stuff, my pager was buzzing like crazy.  It amazes me that you are so faithful for the call of God to pray even then!  And then to take time and call the number, well, we needed them all!  The rest of the day as well.  I have seen God at work here today and we will praise Him and do a little happy dance in our hearts. 
We have been canceled on our angiogram for tomorrow.  They are going to reschedule that sometime, I am not sure when.  They thought they would do a CAT scan, but that is not an option either because they won't be able to see what they want to see because of her rods and screws.  So, tomorrow is another day.  We will see what her chest X-ray will show and we will see if she passes any gas.  Also, we are waiting for the culture to come back on her blood work.  I know you all are praying for her, and I thank you!
Have a great night!  Keep praying!! 
Love to you all.

an afternoon update

So this is an odd time for an update I know.  I just really felt that I needed to share Kasi's concerns.  She is really tired right now and she won't leave me out of her sight.  Thanks to skype I can be out in the waiting room eating and she can be in the room and she knows I will come right in if she needs me.  And yes, there are other people here sitting with her.  I am really thinking that Kasi has hit the point of being done, sick of this whole process.  Her spirits are down today.  Although she smiles and gets cheery when she gets cards and stuff.  So, thank you for those who have sent her stuff.  She wants me to read them to her right away!  Makes me happy to hear all of the prayer that are being sent up and she feels the love from you when you show her in that way too.  Kasi is on day number 7 with nothing in her mouth.  She is getting really tired and hungry.  They are watching her tummy and it seems to be NOT kicking in at this time.  Tomorrow she will be having an angiogram done in which they would like to just make her sleepy instead of putting her under.  They are debating that now because her tummy isn't working correctly and because of her issues with breathing and fluid.  Kasi knows that no matter what she will not be able to eat after midnight tonight again because of the procedure tomorrow.  She feels a little defeated.  The doctors were trying to get some IV food for her, but the doctors in charge wouldn't allow it. It is because of risk of infection.  The is one thing they are being extremely cautious about, which is good because an infection in her patch would be absolutely NOT good.  So, we wait this food thing out. 
Kasi did walk today all around the PICU which was great.  I love to see that!  She felt good doing it, but I think because of nothing refueling her it seems to be wiping her out.  She still needs to get up because it will help her lungs, it is becoming harder instead of easier.  She keeps asking, are the doctors saying I am getting better?  And she is, she just has a long way to go. 
I needed to update this afternoon because she needs prayers right away for this.  She is struggling and so am I as her mom.  I love her a ton and it is hard to watch.  I also have things going on at home that I feel like I need to be there for, like Ben loosing his front tooth, but here I am.  I call Aubree, but it is not the same.  And then there is Nathan who is looking for me to come home every time the door opens.  I guess it is one of "those" days.  I am real, and this is a lot, but I know God is bigger!
 "So we fix our eyes not on what is seen, but on what is unseen.* For what is seen is temporary, but what is unseen is eternal."
We are fixing our eyes on Jesus and His power to heal and restore! 
God is working in her room, pray for Kasi to feel His power once again with in her!

Day 7...still in the PICU

My update is going to be quick today because I am waiting for rounds with the doctors yet.  I know that they are starting her on an antibiotic today because her white blood count is up to 13,000.  They feel like it could be one of two things, but they are doing cultures to make sure.  I will let you know what they find out, but please pray that it is NOT in her blood and that it will not effect her patch.  We are praying protection over that patch of hers!  She is feeling good right now, in pain still but loving her button.  She looks a lot better because she does have her central line out and that is awesome!!  Pray for her to have better bowel sounds.  She still can not have anything by mouth for maybe another couple of days....and she is getting hungry!
I will post more later!

a new day!

Wow, what a long night, but productive!  Kasi's chest Xray is looking better, praise God for that one along with us.  I know we bring so many petitions before our God and sometimes on here it seems I am always asking for prayers for something.  I just want to say, I try to balance it, but sometimes our immediate need seems so great that it even clouds my thinking and typing.  Know that I am grateful throughout the day with her progress and her strength and I have moments of sadness knowing that she is in pain and it is a long road.  I just want her to be better and I have to remember that this is going to be a long recovery.  I am reminded by the doctors that this is a huge surgery that she has gone through and they are pleased with her recovery.  It is also one they take very seriously.  They are going to be taking out her central line and foley today because the longer they are in the greater chance of infection.  That is not good because they really stressed in rounds this morning how NOT GOOD that would be.  She is hanging on to a "higher" temp, but not one they would call a fever.  They are keeping a very close eye on that.  She is currently sitting in a chair, and is starting to joke around.  I love it, her humor is coming back again and even the nurse stops and asks, "what did she just say?" I would tell her and she would laugh.  It is great to see that once again. 
So my prayer for today are this:
Fluid off her body, pain to lessen, no infection, no fever, and strength.
Also, being up here is a such a reminder of when we went through this 14 years ago when she was a baby.  I see all of the babies up here and I just want to wrap up the moms and say it is okay just cry.  It is so hard to watch.  We have Hope, and we have to remember that some don't know the Hope we have or the peace we have in Jesus. 
Kasi and I have been following a blog of a little guy who is up here.  The blog is bowensheart, and for some reason Kasi feels a little connected to Bowen in her heart.  We had the opportunity to meet his mom and dad the other day up here and they were looking forward to maybe being able to go home on Monday.  Well, because of "stuff" of being a heart baby and all the things that go on up here it will be a while now before he goes home.  This really made Kasi sad for Bowen and we have prayed for him a lot in the last couple of days.  I just want to let you all know because I know that we have over 1,000 people reading this blog and if we pool all of our prayer warriors along side his it would be even louder before the throne of God on Bowen's behalf.  So every time you pray for Kasi, and my buzzer goes off, which is so encouraging to Kasi, I know that Bowen's name will be mentioned too.  Matt and Sarah, his mom and dad too!  God knows every detail of these little ones and right now Kasi and I are praying for Bowen to fight just as Kasi is fighting.  Be God strong!! 
Thank you for all of your prayers, we are on the road, together.  I am blessed to be Kasi's mom and she is a gift.  I see God's goodness and blessings around all of the time.
Love to you all!
Jodi

The end of a long day....again!

Tonight as I look at Kasi she is finally sitting up in bed watching a little TV.  I believe after a long process of figuring out that Kasi doesn't tell you when she hurts she actually just copes, they have her pain a little more under control.  Kasi is extremely strong as I have said before and it most-likely is because she has been exposed to so much pain over her life and especially as a baby.  Her body and brain kind of take over and she has things she does naturally to cope with the pain.  As good as that could be, it is also not nice when her body is in real pain and she doesn't know how to feel it or explain it.  Which can cause you not to breath deep and can cause you not to wake up.  I have to say, Kasi is awake right now and is breathing pretty good.  It has been a really long day though.  God is good and He is working in this room.  There were times today that Kasi sats were dropping in the 70's and she just couldn't breath very well.  They have been turning up her O2 and now they finally have it set at 6 liters and 50%.  What that all means I am not sure, but it is a lot more than before when she was on a nose thing at .5 liters.  The fluid wants to take up residents in her lungs, and we are praying against that!  I have prayed over her silently and together.  We have had many answers to prayers and we have a buzzing going on that I love because it is giving me peace to know that people aren't forgetting to pray.  This is a long process and it is looking like we will be in the PICU until Thursday.  On Thursday she will have a angiogram to check her repair.  She will once again be put under and have a breathing tube.  Pray that her belly starts working before that, that her lungs won't be lazy, and that the fluid is GONE!  In Jesus Name! 
I am kind of scattered with all of my thoughts of the day and there is not really anyway to sum them all up.  I found myself in the PICU pleading with the Father again as I saw Kasi not gaining.  I saw her is such pain I would look out the window and say "Lord give me the strength to show her Your strength and that she CAN do this".  Kasi has fought all day!  She has worked through the worst pain you could probably ever feel and try to get strength from muscles that have just been cut through.  She is amazing, but God's strength in her was so awesome to see today.  She now feels good about her day and I am very proud of her.  She has fought and now it is time for rest. A little anyway, she will still be getting up every hour and maybe even have to lay on her vibrating thing every 1/2 hour. 
Keep  up the praying, we love you all!
Jodi

I just asked Kasi if she wanted to tell you all something and she said, through coughs and pain....my chest!  So, Please pray for her chest.  This is her plea to you all!

Your Hands with Lyrics JJ Heller

requests/update

This morning has been full of excitement already.  Starting at 6:20 of course they doctors were in here assessing how Kasi was doing after a long over night of waking up every hour.  Well, what they are finding is the fact that her left lung has air on it, but now her right lung looks "fuzzy".  This could be from all the fluid they gave her plus her pain not allowing her to take deep breaths to keep it off/out.  So, today they are going to work on different pain management plus she will be doing even more breathing "things" to help expand her lungs.  They are going to try and get her up out of bed and talking a couple of steps today.  They will have to call in PT to help with this because she is hooked up to so much yet.  I guess they have a system and it does work really well.   Kasi's blood pressure has gone up some, but that is from taking quicker shallower breaths instead of being restful.  She also has more pain in her belly and side.  This is from her incision which is massive.  Her incision goes from underneath her shoulder blade in her back down following her ribs to her middle front and continues straight down her belly to about 4 inches below her belly button.  She has had all her tummy muscles cut and her diaphragm plus they went in between her ribs.  Yep, she does have pain and rightfully so.  She is doing great though with that, and just really wants to sleep.  Her mask on her face does bother her some just because she has a really hard tube going into her nose to her belly because her tummy isn't working yet.  Her kidneys seem to be stable right now which is great news!  Until she is moving around and stuff we won't know fully what her "normal" will be. 
We are praising God for all of the good things and praying to God for all of these other issues.  It is amazing to watch people up here to really don't know Him and it is sad to see there great pain and anguish because of the uncertainties and unknowns.  We have seen people collect in the family room only to see their child for the last time to what I am thinking to be a single mom here with her baby and her pain almost to much to bear.  I know all of you are praying for Kasi and for us, and we love that and praise God for that, but being here makes life a little real to the fact people go through this daily/weekly/monthly.  Yes this is our journey and we are going through it too, but with a Hope that some don't have.  I praise God for claiming us, for writing our name in His book and for loving us beyond all measure.  I pray that I will be able to show that love to those we see in our family waiting area of the PICU/PTCU.   They are people from all over the country, with life changing events happening right now.  There are tears being shed every moment of every day, some for rejoicing and some for sorrow.  Please remember all the families in these moments of life.
I will update you all tonight about her progress of the day!  Keep posting on her facebook wall if you are her friend!  I read them to her and it gives her a smile!
Love you all!!
Jodi

Here and now!

As I sit here time after time and hear the doctors tell us how great it is that Dr. Stanley did this surgery, I started to think on it all.  What I was thinking is how awesome our God is in the middle of all of this.  I know you have heard me explain how this surgery is one that no one else in the world has ever done before.  There are no support groups, or things to look up online that will help us understand what was and is going to happen with healing.  Well, something one doctor said to me today kind of really made me think about this.  He said that if Kasi were to have any more surgeries on this or complications it would most likely be Dr. Aliason that would be following up on her.  Why?  Because Dr. Stanley is 72 and he is the best in the world, but Dr. Aliason has been training under him for years and is looking to take over when he retires.  All of this to say, that if Kasi wouldn't have had this surgery done now, we wouldn't have had the experience of Dr. Stanley to do this and who knows what it would be like for her.  Well, God knows, and He knew! 
Back in 2008 we were wondering what her back surgery would do to her aorta.  It was a very stressful time as you remember and it was going to be a long, rough, road with lots of pain.  If you also remember God spared her from pain and the long rough road.  She did amazing with her back surgery and rebounded so well she was back to school a month ahead of schedule.  It did though make this surgery happen sooner rather than later.  It caused her to grow 4.5 inches in a very short amount of time which her aorta couldn't handle.  Dr. Stanley said the surgery was inevitable it was just pushed up a bit because of the quickness in which she grew.  All of that to say, God is so good!!!  Why?  If you look at this, if Kasi wouldn't have had the back surgery to speed along this heart surgery, wouldn't we have had the man God had prepared for this surgery.  No matter how we look at this, it was Gods plan for her to go through this, because His Glory is bigger through what we are seeing and experiencing than if we have not had any of this.  He is being seen by many many people because of answers to prayer and by His power being shown.  Kasi too is seeing Him and is feeling His power through her, and because of that people up here at U of M are seeing God's amazing Grace through a 14 year old young woman.  I just thought I needed to share this because it shows God's sovereignty in and through ALL things! 
Today as I look back at our little journey so far at U of M I can see the amazing people of God listening and obeying the call of being faithful.  Faithful to each other and working together because of Kasi.  There were no denominational boundaries or differences, just people loving God and loving Kasi.  At the fundraiser there were more than 1,000 people there at some point.  As overwhelming as that night was it gives me great assurance at the amount of people that are making it loud before the throne of our Father.  What a gift!  How awesome for Kasi and how humbling for me.  This prayer buzzer going off at all times is crazy to think each represents people praying Kasi's name before the Creator of all things!
That brings me to yesterday and the challenges we faced.  They were so hard to be in the middle of and to feel like I was watching from a distance.  My body and mind go into help her mode and I don't even think to cry until I have a moment to release at the end of the day.  Today I can look at yesterday and I almost can truly see all of the angels and them singing all around, but we didn't hear the sound.  Lord, I am sooo amazed by you.  Prayers answered from the time my buzzer started going off and He relieved her pain and gave her peace and joy. 
Today again was a day full of pain and relief.  She dealt with a severe pain in her chest/throat which was almost unbearable.  Now it is less severe and she is sleeping.  She has had her bath and her hair has finally been combed.  I know, not a big deal, right?  It is a big deal if your hair was all stuck in your tape for your central line. Not fun!  She did get her chest tube out, but now they found out she has some air around her lung where the chest tube was. Her oxygen has dropped so they have put her on more O2 now to try and increase her oxygen to get this out of her.  She was actually just put on 100% oxygen with a mask.  They will be waking her up every hour and the hour to do her breathing too, so she will be exhausted! 
Her output today is less then they would like too and her BP is starting to go up.  That just means her kidneys are still trying to adjust to "real" blood pressure and they are trying to recover after no blood for a while in the OR.  Her belly still doesn't have anything going on inside, so still no food.  She will start receiving nourishment through her IV if she goes much longer with out eating.  She is a tough girl and she is fighting.  I am so happy to know that she is not fight alone, but with many people on their knees for her. 
This is our journey, and it is one we do with each step taken in Faith.  Our God is healer, awesome in power...OUR GOD!  Yes, I could just shout it right now.  I have a joy, even through these struggles and tears, knowing that the same God holds her.  It was nice to see another family up here who is also experiencing God's glory all around.  I praise Him for their testimony too, so others can see the work of God, love of Jesus, and comfort of the Holy Spirit. 
Please continue to pray.  We see a lot of doctors in here a lot of times.  And well, we are doing good, we still are on one on one care because she is still not "out of the woods".  But His glory is here and now!
---Jodi

Where do I start

What a day!!  I don't even know where to start because I feel like I have lived a whole week in one day.  Kasi woke up this morning looking better than before because she lost some of the water weight that was around her face.  We thought this day was going to be an awesome day!  It started out smoothly, but then Kasi seemed to be a little less awake or "smart" this morning.  I wasn't sure what it was until the doctors started to collect outside her door and we had a "talk".  This was about the fluid that was building up around her lungs and making it hard for her to breath.  Plus they didn't want these fluids to start to collect inside her lung tissue.  She was told she would have to start and take deep breaths and the morphine knocks her out so that was hard to do because she was struggling to stay awake.  They cut back on her morphine so she would wake up more and at the same time she would have to start doing some deep breathing things to get the phlegm out of her chest.  Well, the result was awful for her.  She started to cough and it is so thick because she is not able to take anything by mouth.  It was extremely hard on her not to mention she couldn't breath 3 or more times and she just looked up at me with fear in her eyes mouthing "I can't breath".  For me that is a moment that I will never forget.  It was an awful, gut wrenching, hard thing to see and take.  As a mom I wanted to just get it out, but there was nothing I could do.  The pain she was going through was so much that her little body just wouldn't do it.  Kasi was really tried, her body just didn't listen.  She almost had tears running down her cheeks and she had an incredibly desperate face.  One I don't ever need to see again.  I was helpless.  The nurse stepped in and suctioned her out and that made her gag.  She would have her moments of peace in between, but they were not very peaceful.  She was scared.
The doctors came by again a little after noon and said they really wanted her to sit in a chair.  This would help the fluid around her lungs to drain or loosen up.  Kasi has a central line hanging from her neck, a chest tube in her side, an artline, foley, NG tube, and oxygen all connected to her.  This moving her thing was going to be a challenge and I was a little nervous about her pain.  Well, it did hurt.  It hurt alot!  The doctors explained to Kasi how good this would be for her, so Kasi was the one who said, "Okay" and started wanting to sit up.  She is amazing.  The pain it caused what unimaginable, but she endured.  She showed grace to all of her care givers, even when they couldn't get her central line that is connected to her neck to stay up.  It was hanging, kind of from her and causing discomfort.  She also wasn't able to get comfortable so the nurses asked what else they could do for her, she just said, "I am fine, I will deal with it".  What?  She is 14?  I have tears every other moment, some of awe of this little lady, and some of extreme pain in my heart because I can't take hers away.  And yet through all of this, we can see a little bit of Kasi through a joke or a smile. 
During this time, which was lasting most of the afternoon and early evening, we sent out prayer requests.  Well, here it the rest of the evening.
After Kasi sat for about 2 hours, yes, 2 hours!!!!  She went back down in bed.  She has some more coughing spells and couldn't get the "stuff" out yet.  The nurse gave her a little Tylenol and her very own suction.  Oh, and in the middle of everything above, Kasi got a fever.  Well, within about 1/2 hour to an hour she took a huge jump forward.  Seriously!  Her fever was gone, she sucked everything up, she could breath, her oxygen sats went up, her coughing was productive but minimal because she didn't really have anything to cough up and she actually watched a little TV.  She smiled and talked tonight and she gave the nurse a hard time.  She is still using her button for meds, but they turned them way down. 
My heart has been on this roller coaster ride today, from being a helpless mom watching my child suffer to a over joyed and thankful mom who wants to do a happy dance before God. 
I don't know if you all read my post from last night, but I posted something my friend sent to me about God being all over in this room.  I will tell you that I didn't need to see His visual presence because I saw the result of Him.  Like a wave of prayers going before the throne of our Father on Kasi's behalf.   My daughter, God's child.  It is so humbling to know that you all stormed up there with your pleas while I prayed silently over her while helping her breath, just holding her hand and kissing her forehead as the nurse suctioned her out all the way down her throat.  Watching her gag and look through those eyes at me as if to say "help" and I just turn to the only One who can and He did.  God has done amazing things for her.  I am excited to say!  Please pray for a good nights rest for her tonight.  It has been an extremely long day.  She needs rest to get better too. 
Praising our Father with all of you!!
Jodi
PS.....she still has a fight to fight, she is beginning to win this round!

Day 2 in the PICU

Here we are once again sitting here watching Kasi work on getting stronger.  She is a little confusing for the doctors right now because her art line is reading a totally different blood pressure then her cuff.  They are going to start taking more with her cuff to see what they can do to start getting good readings all of the time.  They thought the art line was good, and they were actually going to treat her for high blood pressure because it was creeping up a little bit.  I asked the nurse to take it with the cuff and that is when they started to see the BIG difference.  So we are not really worried at this point because the numbers aren't super high for her.  She has a lot of fluid on her body so that keeps her blood pressure up.  When her kidneys decide to kick in and start up really working and have adjusted to good blood flow we should see a difference in her over all recovery.  This takes a while though.  They are the ones that have to process the fluid and get it out of her system. 
Her tummy has not started to kick in either yet.  This is normal and for a surgery like this it might take even longer than the "normal" because it was very lengthy. 
She is a trooper through all of this.  She has to start to take deep breaths which are super hard for her to do.  Also, she is starting to have some of the fluid in her lungs go into her tissue.  We are doing these exercises once every hour to help the fluid not settle into her lung.  It would be a big step backward if these would settle into her lung tissue because she would have to go back on the breathing machine.  She is starting to cough which is extremely painful. 
This could be very repetitive and that is because it has taken me a long time to write.  Dr.s and nurse have been in and out all morning.  I will keep you updated, but things change all day so I will try and some it all up at the end of the day when all is quiet. 
Please pray for our whole family as Nathan is starting to really feel me not being home.  Ben has called up to talk to Kasi because he too is missing us.  We have a long way to go and this might be a little overwhelming for those who don't understand fully.  Aubree had a hard time seeing Kasi like this too and it is something that is in her memory.  It is good for growing purposes and for Kasi to know she is loved by all of them, at the same time hard to see such grown up stuff at the age of 12.  Ron is home with the three kids and that is hard on him too because he longs to be at Kasi's side.  And Kasi only will let me out of the room if she is sleeping and that is only when someone else is here to relieve me.  So it is a long process and we are working on making it as comfortable as we possibly can under the circumstance.
Thank you for all of your prayers and keep them coming!  This is a long haul!!!
Love to you all....

it's 9:00 pm first 24hrs in the PICU

Today turned out to be an uneventful and at the same time long day.  Kasi has made fun of me and stuck her tongue out at me today.  Makes me feel good to know she is all there underneath all of that medication.  She is an outstanding little lady and just saying that is not enough so I will tell you a little about her day. 
I can't say she ever had a "morning" except for the fact of actual time.  At the beginning of her day she had doctors and nurses come in and out.  Dr. Stanley came in and his partner as well.  They are very please with her progress so far.  The nurses have been awesome to her and help her a ton.  She has started to get some fluid in her left lung because it was deflated so long in surgery.  What they are doing is pounding on her chest in the front and the back to loosen the fluid up so she can cough it out.  Now think about that for a moment.  She has just had major heart surgery in which she has a HUGE incision that runs from just under her arm in the back around to the front of her body and down her belly.  They pound on her back and front on the same side they did her surgery.  OUCH!  Kasi looks up at me with eyes that say "mom, please have them stop" and she tells them through her tears that it really really hurts.  The nurses make sure she knows how important this is for her and they continue, and Kasi's reply to them is, "okay".  She says it in one of the weakest voices that represents someone so strong.  She also has been hot and cold all day, but she doesn't have a fever which is good.  My friend Kristie is up here and was rubbing her feet while I was doing something with her hair.  Well, she waved me off and told Kristie she could continue and then gave me one of her ha ha ha smiles.  Not a full smile, because she can't with all of the fluids on her, but enough so I knew she was picking on me.  Note she is not really "awake" or "with it" when this happens because of meds.  But we get small glimpses of that feisty young woman inside of her.  Later on in the day Ben called on my cell phone.  He wanted to talk to Kasi, so I had to explain that she can't talk but she can hear him.  I put him on speaker phone and he said "hi and I love you" to her.  I pick up the phone and notice Ben hung up.  I told Kasi he called just to talk to you.  Kasi.....sticks out her tongue at me and goes to sleep. 
After a long day of sleeping and trying to heal Kasi had a bath.  This little one had to have been held in Jesus arms through the whole thing.  She was rolled and rolled with out complaint.  If you could see her, you would understand what a big deal that really is.  I am amazed along with all the staff here at her tolerance.  She shows grace to every nurse that walks in the door and my most favorite moment of the day was when I came back from my shower I said "hi, mom's back" and she grinned from ear to ear and her eyes had peace.  I can't explain that moment either, but it was a heart melter. 
She is pushing her pain button more now, but that is because she doesn't like being pounded on.  I wouldn't like it either, but there is no other option.  Please pray that the fluid goes away and SOON! 
God is working all around us here at the hospital.  I have to share what one of my friends sent me via facebook.  It is exactly where my heart is:

I didn't want to sound dorky, but I wanted to tell you that I just could imagine what that room looks like for REAL....by that I mean with all that we can NOT see.....it's a room PACKED FULL of God's glory!!!!! I'm imagining angels and beauty beyond our descriptions!!! I wish our eyes could see it just for a moment!!!!!!! Whether we see it our not, it is reality. Jodi, you and Kasi are surrounded by Him!!!!



Just lifting you before the Father so often Friend.........


Hugs!!!!

And from another friend to Kasi because of God things happening out side of these walls with kids:

Hey, Kasi. So thankful for the good news that step one--the surgery--is done. I know you have a long road to recovery but if love helps recovery, yours will be swift. My guys came home today with stories of how the teachers and students poured their hearts out in prayer for you today. Teachers all day long told students that if they wanted to pray and call the prayer pager, go ahead. Any time. They found out in 2 short months what I have known for years--you are amazing. Your name was also on the lips of the students I saw today in my class. What a wonder. Keep fighting, my friend. I'll be watching for more encouraging report.

And then one last one, that is God moving in adults:

Jodi, I was volunteering at our dance studio for a while yesterday and the subject of Kasi came up. The ladies in the waiting room were so moved by what was going on and were thrilled at the idea of the prayer pager - which alot of people are - well they wanted to call it and I told them that they had to pray first :) So there we were in the middle of the waiting room, holding hands in a circle praying out loud for all of you. As other moms came in, they just quietly joined us. It was amazing. Afterward, thru tears and hugs and gratefulness for this powerful moment that we shared, we all whipped out our cells and called the pager like we were giddy 5th graders and just got ahold of our moms phone. They have all me emailing and texting for updates. I just want to share a very small way that Kasi and our God is touching others thru this journey.

 
I share these because they are big encouragements to me about the working of God through this whole process.  I am touched by every one's posts, but today God meant for these to touch my heart.  I am in awe of this pager going off all of the time.  It sounds like I am getting attacked by bees.  Okay, you know I had to make you all laugh, that is me!  So thank you for all of your prayers!
 
Now on to what is yet to come.  We will be in the PICU for a few more days for sure.  Kasi is so strong because she is God strong.  I talked to her a little bit about the first of my friends posts above.  She smiled and wished she could see them all around her too.  She has a long road to go yet and everyone here seems to be happy with her progress.  We are just waiting for things to start coming out and off from her body.  Maybe tomorrow will be a better day for her to sit up more and for pain control.  We will start to see the nurse coming with the pounding paddles and push her pain button. This will help her out a lot.  We will continue this pray at her bedside and all around this hospital.  I will pray for her lungs, heart, chest, incision, tubes, drains, IV's, Art line, central line, NG tube, and even her compression socks.  She will be and always is completely covered with the mighty hand of Jesus.  Keep praying Him into this place!  We are seeing Him at work around us, not just in Kasi's case, but with others seeing Him through us. 
We love you all!  And it is time for a little sleep up here....
Jodi
If you want to send a card, note, or whatever here is the address for Kasi:
Kasaundra DeRoo
Pediatric Intensive Care Unit
1500 E Medical Center Dr
MCHC F5124 Box 0286
Ann Arbor, Mi 48109-0286

 

challenges

Today is going to be a day of filling her will fluids and trying to lower her heart rate and up her fluid out put.  She is being extremely strong and of course she is not having much pain medication for the surgery that she has had.  She looks better today although if most of you would see her right now you wouldn't recognize her.  Her swelling has gone down a ton, but she still has a double chin, bags under her eyes and her lids are super swollen.  She will start to work with a respiratory therapist today to help her cough and take deep breaths.  She just had a chest X-ray and we will see what the results of that are soon.  Pray against pneumonia!
They are all amazed at her pain tolerance and her passiveness.  She doesn't even really complain when she is uncomfortable.  God is with her and we can see that once again.  He holds her close and gives her relief from what could be almost unbearable.
As for all of us, we are doing good.  My hives are going away PRAISE THE LORD!  Seriously, you have no idea how bad they were.  Today, they are less again and maybe in a couple of days they will just be a really bad memory. 
I love this pager going off all of the time and many people ask about it which is nice to be able to share how the body of Christ works together.  ( 474-0246 ) I have to tell you one story about it.  When we were in the pre-op room it was going off and each time it did the doctors and nurses all checked their pagers.  It was a nice smile for me to say, oh that is just me!  I have more stories too, but not enough time to type them right now.
Keep posting on my facebook wall, I love to read the stories and post on here too.  It is amazing how many people are being God's light through this time.  God is good!
Love you all,
Jodi