About Katie Doll
I really miss the girl who at 10 years old was more interested in what was written on her birthday card than the presents underneath it. That happy face just beaming as she read it aloud for her mom and brother to hear. She would have been 16 tomorrow Feb 9 and no doubt the sweetest 16 you could imagine. But where she is now there is no time and there are no presents to compete with what she has.
No Christmas or any other holiday will ever be the same without being able to watch that face burst into such a beautiful smile, but it did it so many times I can still see it. I am so grateful God let me be a small part that of that precious life while it was here. We all still love you Ms. Katie.
One year after she left us, like many, I still think of her every day. Feb.16 is a special day for all of us to show our love. Katie loved Jesus, and was full of love for everyone she met, even an old guy selling peanuts. God once said..."If you have not love, you cannot know me."
I hope if your reading this, one day you will see Katie again or even meet her for the first time. There is a way. God bless you and thanks so much to all of you who helped and prayed for this little Angel who will not be forgotten even as the years fade away.
Katie Passed away early this morning in the P.I.C.U at Greenville Memorial Hospital. I am writing this while in some sort of shock and denial but I have to.
I lost my mom not long ago and now my most loved friend. The sweetest most loving Angel I ever knew is now with her creator. This is an excerpt from an email my sister amazingly sent me just yesterday which came from J.C.Ryle's 'Christ's Greatest Trophy' 1879
"Surely we would not want them back again."
"I tell you the truth, today thou shalt be with me in paradise..." Luke 23:43
The very moment believers die they are in paradise. Their battle is fought,their strife is over. They have passed thru the gloomy valley which we must one day tread; they have gone over that dark river we must one day cross. They have drunk that last bitter cup which sin has mingled for man and have reached that place where sorrow and sighing are no more. We should not weep for them,but for ourselves.
We are still warring...but they are at peace
We are laboring...but they are at rest
We are still at sea...but they are in a safe harbor
We are wearing our spiritual armor...but they have forever put it off
We have tears...but they have joy
We are strangers and pilgrims...but they are at home
Surely better are the dead in Christ than any living! Surely the very hour the poor saint dies---they are at once higher and happier than the happiest person on Earth!
Read the entire passages here... Christ's Greatest Trophy
Katie was a Christian. She told me so when she was 9. She was proud of it.
Katie is staying in the PICU for a while longer. Her oxygen levels were dropping again and they had to put her back on the hospital ventilator with air and oxygen all the time. The found her lower right lung had collapsed and she also has an infection called Pseudomonas which is now being treated with the antibiotic Tobramycin.
Seems like it just keeps on coming. Lynn said last night Katie looked really bad but has improved some today. Lynn pretty much lives at the hospital sleepng on a sofa chair next to Katie. More news when I get it. Thanks for caring.
Got a facemask and went to see Katie today. She was admitted to the PICU as her oxygen was dropping and she couldn't be supported by just the air pump. What happened was a scary instance of her saliva clotting and literally choking her. They couldn't get all the clot out at home. The tests ran at the hospital showed no signs of pnuemonia returning or any other dangers.
Once they got the clot Katie's stats returned to nornal. This is and will remain a danger as long as Katie keeps creating constant large amounts of saliva. The reason she does is because of the trachea tube inserted through the hole in her throat which she has had for 4 years next month. It is the single most inconvenient and time consuming problem Katie has and as we see, very dangerous. Also, I know it must be extremely annoying for Katie to constantly have to try to cough it up or be unpleasantly suctioned 24/7.
Dr Vernon suggested some hope. He said Lynn should consider botox injections to Katie's saliva glands. This would create a dry mouth feeling but should not only stop the saliva problem but hasten the day when Katie may come off the trachea tube. This would be a dream come true.
The danger of getting pnuemonia and other infections are much higher with the trachea tube and anyone around Katie can easily infect her with anything they have. It's likely this is how she got sick to start with and was sent backwards so far in her recovery. Katie still needs the air pump 24/7, something she didn't need before the pnuemonia. She also incuured a rupture of her right eye cornea. This may be because of the lack moisture in her eyes. They suggest sewing her right eyelid shut to maybe keep from losing it completely. This is really a tough decision for Lynn. While I was there, 3 different kinds of eyedrops are put in Katie's eyes every hour.
The other problem now is finding someone who has the skill to do this special kind of Botox injection. Katie should be going home in the next day or two. I gave her a Valentines card that was pink and sparkly and when you opened it Taylor Swift (one of Katie's favorites) sang how beautiful she is. When I took the photo today I asked her to look in the camera and she did so right away. Dr Vernon, who is just great, said it's going to take a long time for Katie to recover from all she's been through lately. The good news is he thinks she will.
Everyone please pray I got a message Katie is being admitted because her stats fall if they don't give her oxygen. Her lungs may not be able to recover from the bout of pneumonia and 6 weeks in the PICU. I will post what I can learn. I can't go see her as I am sick myself. God help Katie Doll.
Sad that all that PICU stay somehow took Katie back some in her recovery. She is not yet able to get back in the Quadrisizer as her arm and right foot are just so stiff. Lynn is trying hard to get some flexibility back but it's slow going. She also needs the air pump all the time. If she is off it for a while she starts getting uncomfortable and agitated. Pray this can be overcome and not a life sentence. It is a lot of extra work and limits many things.
Next month will be four long tough years since the accident and surely there will be a reprieve for Katie and Lynn soon.
"Now therefore oh our God,hear the prayer of thy servant,and his supplications and cause thy face to shine upon thy sanctuary that is desolate,for the Lord's sake." Daniel 9:17
Good news is Katie came home as the hospital said there's not anything else they can do for her right now. Lynn brought the ventilator as Katie needs it all the time for now. It's not oxygen just a little push of the air but without it Katie starts struggling and gets uncomfortable. This is different from before she went to the hospital and most likely is the result of literally being motionless and then restricted to bed 24/7 for six weeks. She has lost some ground. Katie must get stronger and maybe they can ween her completely off the vent and go forward from there.
Lynn is having a problem with even moving Katie's right foot as it's like it's frozen in place. She keeps working on it. She said Katie is looking better and only had one more bad seizure since I saw that last one and this one only lasted about 30 seconds. They are scary to see but may be a part of her brain healing. All those broken connections may just hit a wall and one day they could connect up and Katie sees radical improvement. That's the prayer.
I almost forgot to add that Lynn said Katie has smiled a couple of times today. Boy, it has been a while. Thanks everyone who's reading this. I have to quote my mom Genie here...'Prayer is everything.' Next week, lots of doctors appointments.
Spent some time with Katie and she seemed more at ease but not close to her old self. After a while off the ventilator she begins to struggle for air. She can go a couple hours but then needs to be hooked up. The ventilator is basically giving just a little push of air into her lungs and the hope is to ween her off it at home as Lynn will be bringing it home with her. Pray Katie will soon overcome this device.
I talked with a nurse in Katie's room and she said the double pneumonia was so severe that about half those who come in like she did do not even make it, and those are people without medical conditions to start with. Recovery for Katie and just getting her back to where she was will be a difficult long journey. Having a trachea insert highly increases your chance of getting pneumonia to start with.
Tonite Katie had a severe seizure that lasted about a minute and I have never seen a face contort the way hers did. It was different then other seizures she had in the past. It looked so excruciatingly painful. You feel so helpless and distressed but all you can do is pray it ends soon.
It's hard to imagine the horror Lynn has been going through for nearly four years now and then add all this. Neither can I imagine what would happen to Katie if something happens to her mom. Lynn is constantly busy as Katie cannot do anything for herself and needs attention every few minutes. Something that cannot wait and at the same time watch her daughter struggle so.
Lynn said Katie is a little better but sort of zoned out for now. They increased her dosage of klonapin which will do that. Off the vent during the day but back on at night. Waiting for the home version of the ventilator which comes with a little training. No word as to when they can come home. I think Lynn could about pass a nursing exam all the medical skills she has had to acquire.
Katie wants to be a teacher. I think she will qualify as a nursing staff teacher one day. She's seen a lot and met all types now. There's not much new to add. If your reading this thanks for your interest in the sweetest girl I know and keep up the prayers, they matter.
Saw Katie tonight and although her lungs are better she still needs the ventilator some at night and seems uncomfortable most of the time. Her oxygen numbers are good but often appears to be struggling for air somewhat and annoyed. No one can tell us why and are trying to figure it out. She will jerk as if shocked every minute or two and her head, arms and legs flail about for a couple seconds or so. Her left calf is bruised from hitting the bed rail so much. It's her left side doing most of the moving but even her right side moves with the jerking.
They gave her 2 ml of Adivan and it seemed to help for about 20 minutes as she calmed but then everything came back. Katie is not smiling or attentive but distracted probably by this condition. Pray they can get her comfortable and figure things out a little better. It's really hard to see her this way. Her and her mom are way past due for a break. Both have no choice but to keep fighting 24/7.
It was tough to see Katie today in the hospital. Although all her stats look ok just watching her lie there with the sort of mini seizures afflicting her is hard. They say she's not uncomfortable but it sure looks that way. I took the video because you have to see her to understand what I'm saying.
Lynn says these are 'mini' because usually she will go into them for 30 seconds or longer, but not that often. Sometimes only once or twice a day. We don't know why it's this way right now. Once tonite Katie sort of lifted up and looked directly at me while making a strange noise and moving her mouth like she was trying to say something. This lasted a full 30 seconds before she fell back in her bed. It was very un-nerving and I could only tell her I loved her and one day everyone will understand.
Her chest Xray looked a little better than yesterday and they think she can be back home in about a week. This time they will be sure she is ready. Also, when I first got up there tonite Katie was very active in her bed. Constantly moving her left arm and leg every direction. I started talking to her and she slowly calmed down and gripped my hand squeezing and pulling it around. I told her again there were a lot of people who loved her and were praying for her.
It's 11:45 pm and Lynn is following the ambulance with Katie going back to the hospital as her oxygen was clocking around 80%. They got it back to 95 in the ambulance but need Katie to be back where they can maintain this and try to correct what is causing the problem. As before they will probably go into her lungs to remove some of the built up junk as it seems to be a re-lapse of the pneumonia.
She should be ok and probably won't have to go thru everything as before like the chemical coma etc.,but she is still very weak from the last 5 week stay and it is a serious situation for her to be in. The battle continues and I will post anything new as I hear. Everyone pray it will get better for Katie and her mom soon.
Hey Tom I meant to have sent you an update when Lynzie sent you that picture just now getting to it a little after 11 pm and still gotta do her stretches so I have to make it short. Katie is doing good about to get her secretions leveled out I think. Yesterday she had to go to her Pediatrician who had been following her hospital notes daily. She informed me that Katie was a little anemic when she left the hospital her hemoglobin/iron was so low she put her on some liquid vitamins for a couple of weeks and will go back in a month to recheck it. She also had a PT evaluation yesterday.
A couple of things, her right hand wanting to turn in where they had taped it to that board for a month in the ICU and her right shoulder, She grimaces when I try to do her stretches and cannot fully range it. This is also from being so immobile in the hospital for a month and three days. Just more time on that arm and hand and I will get it fixed! Now the good news...
They said Katie's range is so good everywhere that she doesn't need all that much done everywhere. Just her heel cord stretches and extra time on her right hand and arm and work her hands. That takes a good bit off me as far as exercises and stretches but I want her to stay flexible like she's been. I have worked hard to get her and keep her this way and certainly don't want to lose it now. They assured me that she won't. She had a PT session today and got on the P-nut and sat on the side of the bed and as usual acted like she wanted to put her feet on the floor and take off.
She was worn out afterwards though and even had a 35 second seizure. She see's her pulmonologist Wednesday so if I don't talk to you before I will let you know how that goes. Talk to you soon. Thanks -LYNN
Missed Christmas but Katie is much better, enough to get home where she is moving around in her bed and getting some stretching and soon maybe the Quadrisizer. She's looking around with better looking eyes. She still has a long way to go just to get back to where she was before getting sick as being immobile and in the coma like state for so long took it's toll. May 2012 be her year,it's her turn. Lynn had literally moved in with Katie at the PICU and says thanks everyone for the support and prayers. My mom Genie used to say "Prayer is everything". -Tom
Katie will be in the hospital a couple extra days to be certain she is stable enough to go home. The great news is she has managed well completely off the ventilator for 2 days straight. Her eyes and general looks have improved somewhat. Again,some had said she probably wouldn't make it. They just didn't know Katie and her mom. Not the best Christmas but we'll take it. -Tom
Katie has been totally off the ventilator since before noon today. She is tolerating it fine although she is still weak and sleepy. Her eyes are looking better but the left one is still quite red. She was started back on her home feeds today and seems to be doing fine with that as well.
If everything keeps going as it is I look for them to kick us out of here Wednesday. Although it is a little scary I will be sooo glad to get home. Thanks to everyone for your prayers and support. I hope we all have a happy, peaceful and blessed new year. -Lynn Doll
Katie has been moving around in her bed which is new as she has been mostly immobile for the last weeks. She's fighting her way back.Got the following email from Katie's mom up in the PICU today...
Katie was off the ventilator for 2 hours this A.M. and did great. Then she was off from 5 to 7 and did great again. The plan is to keep adding time off the vent each day until she is completely off all day. She is very weak but moving around some. She was taken completely off the Vercet as of this morning. She has lost maybe 15 lbs since up here and I have never seen her look so frail, but now maybe we are on the right track. Thanks to everyone for your prayers and concerns for Katie and my family. I hope you all have a very merry and blessed Christmas! -Lynn (Katie's mom)
Visited Katie today in the PICU and made another short video. She was very drowsy but you could see her eyes move a little which is fairly new since she's been so heavily sedated. They had cut her Vercet in half and will cut it more soon. Her breathing was somewhat erratic like 2 or 3 really short breaths and then a longer one or two. She still needs constant observation and often suctioning. Her eyes are red but better then yesterday. Her eyes opened wider to look at me a couple times and it is unsettling to see that left eye still.
All her vitals look good and her oxygen very good. It's very hard to guess how much she is aware of, but that should improve. It is pretty certain she will be there thru the holidays unfortunately, unless there is dramatic improvement. I talked to her for a good while and it seemed that she was glad I was there and sort of content. I tried to sing 'Blue Christmas' and her legs moved some maybe like she was trying to leave. I never was a singer.