Kristin Is Out of the Hospital

She got to leave the hospital around 4:00 this afternoon and go back to the nursing home. It is good to have her back in her familiar environment and to not have to make those long trips anymore.

I am still concerned about her rigidness and lack of eye focus and tracking. Her eyes continue to be dilated also. I am hoping with more time out of bed and up in her wheelchair, and time in general, that she might get back what she has lost. I just want her to enjoy life and be able to smile and respond to things she likes again. I would also love to see her little body relax and stop jerking so much.

I always seem to find songs that speak to me and today was no different. It is such good therapy for me to turn up a favorite CD and spend time praising God. Today's CD of choice was Jeremy Camp's "Restored". He has a song called "MY Desire" that really hit home with me today. I just want so badly for God to use my life to help others find Him.

My Desire

You want to be real, you want to be empty inside
You want to be someone laying down your pride
You want to be someone someday
Then lay it all down before the king

You want to be whole, you want to have purpose inside
You want to have virtue and purify your mind

You want to be set free today
Then lay it all down before the king

This is my desire, this is my return
This is my desire to be used by you

You want to be real, you want to be empty inside
And I know my heart is to feel you near
And I know my life
It's to do your will
It's to do your will

All my life I have seen
Where you've take me
Beyond all I have hoped
And there's more left unseen

There's not much I can do to repay all you've done
So I give my hands to use

That is my prayer. Amen

Life is Hard but God is Good

I got to go see Kristin today. It was an emotional time for me. When I got there, she was in bed looking away from me. She is really favoring holding her head to the right side. Her eyes were big and dilated. When I started talking to her, I could tell she heard me, but she does not turn and look at me. I loved on her awhile and then decided I wanted to hold her. I had to do some rearranging, but I finally got her on my lap while sitting in a chair with lots of pillows. Her eyes seemed to calm, but her body won't quit moving and jerking. The jerking is different from how it was a few days ago - more like spasticity now. It was hard to hold her like this because she is so big. I turned her around so she was sitting on my lap because I wanted to see what she would do with her head. She got locked into the same position she does in bed if I let her rest back against me - so I held her away from me and tried to get her to work on head control a little. Then I decided to get her up in her wheelchair and see how that went. She sat in it for about an hour and a half and tolerated it fine. But she continued to keep her head mostly to the right and locked back. Her eyes were still big and dilated. I put her movie, "Spirit" in and played her dancing hamster a couple times. She is not tracking or smiling at all. I continue to fear that she has more brain damage and is possibly blind. I cannot be with her without getting emotional. Oh how I hope this is a temporary state for her and that she will again smile and respond to people and things.

I was thinking about all that's happened this last week and how hard it is to know what is right. When Terri Schiavo was disconnected from her feeding tube and starved to death, I was outraged beyond words. I thought it was so wrong for the law to allow that to happen. It was nothing short of starving that poor woman to death. Very inhumane and totally unbelievable. No one would look at her (or Kristin) and not think, "I would never want to live like that." BUT - it has to be God's decision when we die. He is the creator of life and therefore only He has the authority to decide when each life ends.

With that being said, I still struggle with the boundaries between medical intervention and God's intervention. We have Kristin on a "no code" status, meaning that if her heart ever stops beating they are not to give her CPR to start it again. When she got to Riley hospital last week, we were asked by the doctors what our wishes were concerning this. Just how much or how little assistance did we want given to her. In the past she has been put on a ventilater a few times to give assistance until she can breathe more comfortably on her own. She was never been on it for more than two or three days at a time. Just enough to take the stress off her body while she fights off and illness and can breathe easily on her own again. But last Thursday, she quit breathing and the EMT's were doing it for her with the ambu bag (for probably 30 minutes or so) until they put her on the vent. So the next day, after she was breathing on her own again, one of the doctors at the hospital asked us if she quit breathing again, if we wanted them to assist her or not. I really struggle with this question. If they didn't do anything, how long would it take for her to die? Is there a chance she would start breathing again on her own? Would it be wrong to not assist her? Would she suffer if she wasn't assisted?

Sometimes it is hard for me to decide what is right in God's eyes on this matter. I would never want to do anything to "kill" my daughter or to allow her to suffer - but I also do not want to do anything to prolong her life especially when she might be worse off than before. Oh Lord, show me what is right. Show me what is Your will for Kristin. Please give us clear direction on this.

I heard a song on the way to the hospital that really expresses how I feel right now. It is called Life is hard (God is Good) by Pam Thum

You turn the key
Then close the door behind you
Drop your bags on the floor
You reach for the light
But there's darkness deep inside
And you can't take it anymore

'Cause sometimes living takes the life out of you
And sometimes living is all you can do

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

You start to cry
'Cause you've been strong for so long
And that's not how you feel
You try to pray
But there's nothing left to say
So you just quietly kneel

In the silence of all that you face
God will give you His mercy and grace

Jesus never said
It was an easy road to travel
He only said that you would never be alone
So when your last thread of hope
Begins to come unraveled
Don't give up. He walks beside you
On this journey home and He knows

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

God's Grace

Today is the first day I have not been to see Kristin in the last week. My heart was with her so much - I thought of her all day. It seems she got thru another day without any fever. But still, I don't know how she is really doing without seeing her.

But something tremendous happened today. God wrapped his loving arms around me thru the many correspondances of love I received. I received comments on my blog and emails from others today that really ministered to my soul. I was just reminded of how down I was yesterday and how much I was dreading today because of a heavy work load (I worked from 9:00am-7:30pm) and not being able to see Kristin. Then I suddenly realized how God worked thru so many people to encourage me and give me a smile on my face again. I got several phone calls from people in our church, had many caring customers who expressed their concern and got several emails from others who wanted to remind me they were praying. God is so good.

Father, please forgive me for the times I take my eyes off you and focus on my situation thru human eyes. You do so many things that I don't even notice. I'm so sorry for that Lord. Help me to be more aware of You in every situation. Help me to be more thankful and less doubting. I know you are in control of Kristin's illness. I'm sorry I get impatient - and demanding for answers. Allow my faith to grow and to trust in your ways and timing.

Lord, I so want Kristin to go be with you. But I know I am selfish and tend to think I know better than you. It is hard to see her struggle inside a body that doesn't work when I know she could be whole and complete with you in heaven. I know I focus too much on my pain - the pain of not having a daughter who can play and run and laugh. But most of all not being able to hear her say "mommy" or "I love you". Not being able to get good night kisses or hugs or hear her voice. It hurts so much sometimes I think I will die. But never do I doubt that you are God and your ways and thoughts are higher than mine. I know I only see but a portion. Thank you for the hope I have that eternity will be perfect and that is where Kristin and I will get to share our time together. Help me to focus on what you want me to do - your perfect will for my life and hers.

Thank you Lord, that today you showed me your love thru friends and strangers. Thank you for answering the prayers that have been sent on our behalf and strengthening my faith and my spirit. You are so good - words cannot describe your love and grace. Well, actually I guess one word can - JESUS. Thank you Lord Jesus for being alive in the world and sharing your spirit as proof. Because of you - I pray - Amen.

Wednesday's Update (On Thursday)

Well yesterday was an emotional roller coaster for me. I think mostly I'm just tired and stressed. When I got to the hospital, she was sleeping so peacefully. The nurse came in and said they were not going to re-do the CT scan because they were able to see something on the one they tried Tuesday. She said the Dr would be in to talk to me.

I waited for several hours and finally the Dr came in and said the CT scan showed her sinuses looked fine and they waiting to compare the head part to a previous scan but that would be tomorrow (today) because the old scan was kept in another building. She expected that to be fine too.

The Neurologist came in and said her EEG did not show seizure activity (remember Tuesday another Dr told me it showed something but they had to wait for the Neurologist to read it) I did notice while he was examining her that she was not doing the jerky, tremmery movements very much, although she was very active and moving alot. The one thing he did question was whether she can see. Her pupils have been very dilated and he said they did not react much to the light he shined in them. I don't know if this is temporary or if her brain has been further damaged.

It seems she is getting better because she has not ran any fever since Tues afternoon and it didn't get very high. Since her tremmer movements were better, I'm thinking maybe she is getting better. It's just a waiting game now.

They were going to do an echocardiogram yesterday just to check her heart since she has had some blood pressure issues thru this illness. They were not expecting to find anything. They had not yet come in to do it before I left at 3:30.

I guess the plan now is to just let her finish the 10 days of antibiotics and if she keeps improving, she will go back to the nursing home after the 10 days. It is hard to still not have any answers as to what caused all this. Especially when nothing like this has ever happened before. Also, each time she gets so sick, we wonder if this will be the time she will go be with the Lord. I am having a hard time being with her everyday and then being away from her today. I have to stay home and work today and tomorrow, so I probably won't see her until Sat. It is hard to not be with her looking out for her, but I know God is there. There are just some things in life that are so hard to endure, but God's grace is sufficient.

Tuesday's Update

I arrived at the hospital around 10:00 this morning and they were preparing to take Kristin for an EEG. We are wanting to know if her activity is seizure related or not. That went well, but I don't know the results yet. The nurse said that she only slept about 4 hrs last night and she spiked a fever in the night too but it came right down with Motrin.

I am observing that she is much calmer in the mornings with the jerky movements increasing by afternoon. We took her down for a CT scan of her head and sinuses but they could not do it because she was too aggitated and jerky. She began running fever right about the time we went down.

I got to talk to some new Doctors today and I feel we are headed in the right direction. They are still treating her for infection, but can't find any signs of any - only symptoms. They have changed one of the three antibiotics they have had her on since Thurs. The new one they started Sun and doubled today, treats infections more in the brain, head area.

I talked to a Developmental Dr briefly today before I left and he identified her jerky movements by name - but I had never heard that term before. He said he was anxious to know the results of the EEG from today and would talk to me tomorrow about that. The plan is to take her down early tomorrow morning and try the CT scan when she is more calm. Please pray this will be successful because I am anxious to know what is going on in her little head and sinuses.

Thank you so much for your concern, thoughts. and most of all prayers. Your comments are a great source of encouragement for me and your prayers a great comfort. I know God is working and has a plan to bring from all this. May He bless each one of you.

Monday's Update

Well, when we got there this morning, she was more calm than I have seen her since all this started last Wednesday. Her body was still having jerking movements, but they were less pronounced and her eyes looked better. They said she had a good night and slept thru it. (which she has every night)

The Dr came in and we talked about all that has gone on and she wondered about doing a CT scan of her sinuses to see if there is some sort of blockage or something going on to make her uncomfortable. She thought of this because I told her how many ear, sinus and tonsil infections she has had over the past few months. I asked her if they could possibly do a whole head scan just to check and see if there is anything else because of all the jerky movements etc. She thought that might be a good idea.

We went down to the cafeteria for lunch and when we came back she had begun running fever again and her body was jerking more. Also her eyes were very dilated again and it just seems she's kinda off in her own little world.

Got to talk to another Dr before we left and I asked her about possibly doing a EEG also to see if these movements were seizures related or not. She said they would have Neurology make those decisions. So the plan is to go up in the morning and see what they decide. I want to talk to the Neurology Dr's and give them as much info as possible.

Thank you again, for the continued prayers.

Trusting and Waiting

Today was another horrible day. When I got to the hospital, Kristin was running a low fever,had a high heart rate and a high respiration rate. The nurse came in and said they had given her some motrin and some adavan (spelling?) to try to calm her and bring the fever down. She then went to lunch. Over the next hour her heart rate, respirations and fever all continued to climb. She never quit moving and spasming. Her blood pressure started dropping and so did her oxygen saturations. The Dr got busy treating all those things by giving morphine, more adavan & Motrin and started pumping fluids. They also put her on oxygen. By the time we left at 9:30 pm, she was trying so hard to go to sleep but her little body would not quit jerking. Her vitals were all down to a safe place, but we still have no answers to what the problem is. The Dr's keep wanting to run blood cultures, urine cultures and they did yet another chest X-ray. None of this has shown us anything. Today I asked repeatedly for neurology to become involved and for a head scan. They say the Dr's will discuss it tomorrow morning in rounds. My plan is to get up there first thing in the morning and keep asking. I will be the "insistant widow" until they agree, so to shut me up.

God seems to keep saying wait and trust, so I am trying. But it is so hard to see your child suffer and not be able to fix it. May God be glorified in all this. Thank you for your continued prayers and your encouragement. It means more than words can say.

Luke 18

Today was pretty frustrating and upsetting for me. I went to see Kristin this afternoon and walked in to find her pretty aggitated. Her cheeks were flushed and she had a low-grade temperature. They told me the plan was to move her out of ICU to a regular room. They plan to keep her until she finishes the three antibiotics via IV.

I took 4 of her favorite videos in plus her favorite toy, Karaoke Kim. She is a dancing hamster who sings, "I Will Survive". She always smiles and often laughs when she hears her singing. She did not respond at all to it. Nor the videos. She has her legs drawn up and her muscles are tightly constricted and spasming. She is constantly moving because of her spasms. I keep telling every Dr and nurse I talk to that something is not right, but I feel they don't see a need to investigate further. The blood and urine cultures are not growing anything, but they are still saying she had/has an infection.

I do not know whether the trauma from Thurs (convulsions, 107 fever etc) has further damaged her brain and this is the result - or, what I tend to believe, they simply have not found the problem that started all this in the first place.

Please, Please pray for some answers and pray for relief for Kristin. I don't want to doubt God, because I know there is so much I cannot see or know - but I cannot stand to see my precious girl suffer. Why must she continue on trapped in a body that doesn't work? I guess I will never know this side of heaven.

"God will always give what is right to his people who cry to him night and day, and he will not be slow to answer them. I tell you God will help his people quickly." Luke 18:7-8

Another Update

Yesterday was too busy for me to get an update posted, but Kristin is doing better. They got her completely off the vent and oxygen on Thursday night. Yesterday, Mark took off work and went up to be with her. She pretty much slept the whole time. I worked until mid afternoon and then went up and she was awake the whole time for me. I could only stay about an hour because my son had a football game and it was parent's night, but it was good to see her looking better. She acted kinda restless, and I saw some real jerky movements, but she was still really drowsy acting too.

We still do not know anything about the source of infection. It concerns me that we really don't know what caused all this to begin with. I called first thing this morning, and they said she had a couple incidents last night where she was irritated. I will work this morning and then go up and see her this afternoon. I am planning to stop at the nursing home and get a few of her favorite video's and toys and see if I can get a smile. Please pray she will. I am concerned of further brain-damage from all the trauma of Thursday. Please also continue to pray for answers to the problem. God bless you!

Update

Hello!

Well, this has been one very long day. After I left my prayer request here and headed out, I received a phone call right away from the nursing home, saying that the transport service could not get there for another 15 min. Then they called back saying that they would not be there for about 25 min. They had called 911 for emergency paramedics to come get her and take her to the local hospital first. She was in real distress. I actually beat them to the hospital by just about 5 min. I was not prepared for what was happening when I got into the ER. She was not breathing on her own, they were bagging her and she was convulsing pretty badly. They ended up getting her on a ventilator, then they did some X-rays and bloodwork. Her temp was 107!! They put all kinds of ice bags on her and within the hour they had it down to 101.7. The ER Dr. said she had pnuemonia in one lung and that she needed to be admitted. I told them I wanted her taken on up to the Children's hospital in the city, so she was transferred there. Upon arrival, her temp was down to normal, but her blood pressure was real low and her blood acidic. They began doing X-rays again and trying to stabilize her. They began 3 different powerful antibiotics for the infection and other medication to bring her blood pressure up. They also started pumping the fluids to flush her system out.

The Dr there said she did NOT have pneumonia, but her white count was elevated (from 14,000 a couple hrs before - to 26,000). They eventually sent her down for a CT scan of her abdonmen, because they saw something a little questionable on the X-ray and I feared appendix problems or something. The CT scan showed no problems.

Another Dr came in and started concerns over her high vent settings, so they began weaning her down on it. As of 10:00pm she was beginning to look better according to her vitals. She was responding well to them weaning her oxygen levels down and her vent rate down. She was taking a few breaths over the vent assistance, so that was the first good news we had all day. The Dr encouraged us to come home - he thought she was stable for the night.

My continued prayer request is for her to respond to the antibiotics, to come off the vent and breathe on her own and to not have any further brain damage from her high fever and seizures today. It would also be nice if they could figure out the source of infection.

I have never seen her not breathe on her own or have convulsions before - so this was quite an emotional day. There is nothing worse then seeing your child suffer, especially when you don't know what is wrong.

I had my therapy on the way home though. I put in my Jeremy Camp CD and cranked it up. It was so good to put my focus back on Who God is and what He had done and is doing in my life.

Thank you so much for your prayers - it helps so much to know our friends are praying.

Prayer Request

Hello Friends,

I have a prayer request for my precious daughter, Kristin. I got a call yesterday, from the nursing home where she lives, that she was crying very hard and sweating profusely. They had the Dr check her and she ordered a couple X-rays, which we still don't have the results of. I went up to be with her last night and although she was not crying, she was very restless and very wet from sweat. I did manage to massage her head and finally get her to drift off to sleep.

They called this morning and said she was doing the same thing, but worse. We are headed up to the Children's Hospital. Please pray they can quickly find the problem and relieve her pain. Also for safety as I travel up - it takes about an hour.

Thank you so much!