Tuesday, June 16, 2009

Rollercoaster of a day.........seizures

The title says it all right now. Her EEG came back abnormal so she did end up having a head CT done this afternoon. (boy was that the sight seeing them maneuver the ECMO machine, her stretcher, the double IV pole, and the ventilator all at once!)That was a very scary thing for us because who knows what they would find in that scan. All we could do was pray that there wasn't any hemorrhaging and that we could just treat her seizure activity with medication. The results are not officially in yet, but report says according to our nurse this evening that there was not any hemorrhaging detected. THANK YOU JESUS! I do have to say that JR and I were about the most afraid of these results than any other thing that we have been through thus far. Our thoughts were..........we went through with this heart transplant so that she could have a good quality of life. If this was how it was to end up, then why did this angel heart go to her?? Then, we got our answer. So far, test results are ok but will know for sure when we get that "final" report from the neurologists in the morning. Please pray that they are as we think. Her chest x-ray this morning was MUCH better and I am anxious to see what it is in the morning because she looks so much better!!
Lindsay looks amazingly well after all that happened yesterday. She is nice and pink and her swelling has gone down quite a bit. She is peeing well, so no problem with her kidneys. WHEW! The new thing now is that she is hooked up to a EEG monitor for 24 hours so that they can video take and record any seizure activity if she has any. This way they can correctly medicate to where that activity is taking place......is how I understand it anyway. So, after everything is hooked up for that, she looks like she has a mummy head. I will try and post photos later. My computer won't upload right now for some reason.
The other news is that they decided to lower her pressures a bit on ECMO to see how her heart function was and she did as well as expected after all that she has been through. Dr. Crowley would like to have her off ECMO tomorrow. We are not getting our hopes up for that because Lindsay does do things in her own time. So, I will say she will be off either tomorrow or Thursday. To answer a question from a comment that was posted, yes, this means that she will be fine on her own off of ECMO if her function seems to be ok and her blood pressure stays high enough on its own. Again, she may need another day or two, but that is ok with us and the whole medical team.
Another added item is that I just wanted to share something awesome with all of you to prove what an incredible medical team that they have here at U of M. Although I have never seen anything like it in my life, but yesterday as everyone was working so diligently working on saving our daughter's life, I have never seen such an organized chaos!! It was absolutely incredible and not one person missed a beat. We are eternally grateful for every one's effort. God Bless you all!
Thank you once again for all of the continued prayers for our princess. She is proof that prayer works so we continue to march ahead. We are humbled.
With much love~

Please lift the Hagerott family up in your prayers this evening. Zachary will be having his hemi-fontan done in the morning. I saw him this evening and he looks just fantastic so I have positive thoughts going about this for him. His carepage is linked to Lindsay's so that you all can get into "stalker" status for him. Go Zachy Go!!!!!!


Kyle Keiser said...

Thank you so much for taking the time........never think of your supporters as a burden.....we all know you're doing all that a human is capable of to support, deal and function. If you don't have the strength for your stalkers, everyone gets it. On the other hand; if this is a release, we are ready listeners!

Keep hanging on to the roller coaster. Raise your hands when it feels like you can, hold tighter when it feels like you should. And know we plummet with your fall and lift you up in your rise.

Still loving, praying and waiting for the best that is yet to come.


Barbara said...

We have to believe that this will all turn out okay. God has great plans for this little girl or else he wouldn't have let her have that angel heart. We love you all and you are in our prayers. Barb Sallee

Danielle @ Living Out Loud said...

Oh Suzie... thank you for posting (amidst all that you are going through!). This is a good and hopeful report, yet my face is still tear-stained... I am so sorry that you and JR are having to go through this. I simply cannot imagine the rollercoaster of emotions and anxieties that you have experienced in the past week. Yet, through it all, you remain faithful, hopeful, and I can even detect a bit of humor in your post. I am amazed. What special parents God chose to parent His beautiful princess! Continue to keep your eyes and heart fixed on Him and He will continue to shower you with the grace you need to get through everything.

I was on my way to bed, but had so much anxiety over Lindsay, I decided to check one more time. I'm glad I did... tonight, I will pray specifically for a good CT report tomorrow as well as an end to the seizures (my brother has epilepsy, so I know it can be tricky getting the right combo/amount of meds to control them). And, of course, I will pray that her little heart stays strong and helps her body recover.

You and Lindsay are never far from my heart and mind. I believe that the Lord will complete the miracle He started when Lindsay received her angel heart. I just believe He will.

Love & many, many prayers... Danielle

Olivia (CA) said...

Come on baby girl!

We're still praying like crazy!

Grandma~rella said...

Praying without ceasing for your sweet baby girl~storming the gates of Heaven! What a truly strong and brave little girl Lindsey is~God bless her and God bless her family and medical team, also. Please know, even though we don't know one another, my thought's and love are with you all! (((HUGS))) G'Ma~rella

Anonymous said...

Just to clarify---- so when you say she will be off ECMO does that mean she can be Okay on her own without the help of the machine? Is the fluid gone from her lungs? Sorry for the questions as I'm sure you are already so overwhelmed.

Praying so hard for a clean CT scan to come back tomorrow. Praying for courage and strength for you, your hubby, and your Amazing Lindsay. I just cried tonight so hard for her before this post. At least things look like they can turn around at this point and that is good news.

Go Lindsay, stay strong, stay brave!!!! I am praying for you so hard as well as Tommy, Sophi, and Zachary!! WOW, you children amaze me. Your parents amaze me as well.

Here's hoping to more good updates!! Hope everyone has a peaceful evening with no setback and just good marchings forward!!!!

MJ and David said...

Thanks for the update..didn't want to bug your mom again! Been checking all day. Still praying for our Princess! She does do things on her time! We are sure that the Lord will take care of Lindsay and eventually she will come through all this major ordeal.


Anonymous said...

Thank you for the update guys, here is the link to Samuels carepage. PeeWeesAdventure
Prayers still being sent.
Jason, Amanda, Caden and Carlee.

Tonya said...

Thank you for posting updates for all of us "strangers". We are all out here praying for your little fighter and your family.

Lindsay is such a fighter that she is going to pull thru this. Everytime I see her little face it makes me smile. I have a 2 year old daughter and I can't even imagine what you are going thru.

Sending all our prayers your way.

aimee gillespie said...

Thank you so much for the updates. I am so sorry for the roller coaster ride you've been on over the last 2 weeks. As Kyle so beautifully said, "...know we plummet with your fall and lift you up in your rise." We're all here with you every step of the way. We'll be praying for the CT results in the morning.

The good Lord gave Lindsay this angel heart for a reason. I have faith that this is just a rotten bump in the road. She is one of the strongest little girls I know and I just know she's going to fight her way through this!

Please let us know if there's anything that we can do to help you and JR.

Aimee and family

Anonymous said...

Thank you for the update! STAY STRONG LINDSAY!!!

Anonymous said...

Thanks for the up date, everyone here at work has been asking about her. I hope she stops having seizures. I know what its like see someone have one, we have a girl here at work that has them. Our thoghts and prayers are with all of you. Lots of Love Aunt Rette and Uncle Wade.

Anonymous said...

Suzie and family, I know that seizures are scary!!! I will never forget the nihght that I got a phone call the Miguel was having seizures SCARY!!! /he was definately not himself for acouple of day but after awhile as you can see by pictures he is doingawesome. My heart and prayers are always with you guys!!!

Elaine said...

Well, this was worth staying up for! Kyle said everything so beautifully...so just re-read hers!! :)

I just want to say one thing: NEVER post if it is too painful for you...take care of yourself first...we can wait. Your strength is amazing, as we have all said many times...but you have a right to fall apart. You have a right to scream and yell and cry and ask "why" without worrying about what we are all thinking. We are here for you 100% and you can vent at us whenever you want...we will love you no matter what.

That being said...thanks for the post!!! You know we are worrying more with each hour and we appreciate more than words can express when you are able to tell us what is happening. Tonight I just wanted to GET IN THE CAR!!! But we all got through it, and hopefully, can get a good night's sleep, confident that Lindsay's CT scan will be clear.

The number of prayers being lifted up to God in your behalf keep multiplying...your prayer warriors are busy tonight for Lindsay, you and JR, as well as Tommy, Sofi, and all the heart kids we love so much.

Oh, Suzie...we just want to make it all better...but I guess only God can do that.

Good night, dearest one, Elaine

Stephanie said...

Thanks for the update. The princess has been on my mind all day. Seems like things are going in the right direction! Still praying for your little girl!!!

dani said...

i know you have had a long day and i thank you for taking the time to call me today..i love you and lindsay so much and wish i could be there for you more than i am. know how much you are loved, cared for and thought of. i am off tomorrow and thursday, call me anytime!! kisses for princess..:)

all my love...dani and family.

melissa said...

Best news I have heard all day!! Still praying for God to work his Miracles!

Much love,
Melissa and Matthew

Lacy's Family said...

Such a relief to hear that she is doing better. I can't wait to see the pictures of her smiling face again!!! I will continue to pray for her tonight that the CT scans will come back great and that she will continue to recover.

Anonymous said...

Thank you for the update. I have been thinking about you guys all day! I will continue praying for Princess and you guys and wait for the next update!:)

The Mendhams

Pamela said...

Dearest Suzie, J.R., Lindsay and family,
Prayers are furvently with you here in N.Calif!! Our daughter was born with a VSD and had open-heart surgery when she was 4 years old...Now she's almost 18 and a big volleyball player!! I know how scary it is, just hang in there! Lindsay is a fighter and that is HUGE!! We know God is in control, and that HE will take care of her through the awesome hands of her medical team:) Thank u forb keeping your cyber/prayer family posted, i check on her multiple a day, sometimes! Hugs and prayers to u all from the Sarlandt family

Anonymous said...

Thanks again for the update,, Dani told me on my way home from work, so I didn't have to wait til I got here!! We will pray for great results for her tests tomorrow. Please take care of yourselves, Lindsay is under care of the best!! Don't worry about the boys, we have them under control :) they've had a great time this wk so far, plans are for a lunch and walk to park tomorrow,,if we don't get rained out! Cole is going to ride the "big bike" there. NO RAIN !
love and prayers, Don and Brenda

Karen said...

You are so right about the "organized chaos" at U of M. Lindsay is in a fantastic heart facility--they will jump through hoops for her.

Praying for Lindsay, your family, and for the medical professionals,

Anonymous said...

We are keeping all of you in our prayers I am so sorry that all of you have to go through all of this i pray that God will heal little Lindsay so that all of you can go home soon.

Jennifer (Samantha's mom)

MommaV said...

I have been following Lindsay's story since shortly before she got her new heart. We are awaiting being put on the transplant life for my daughter Gabriella, 4.

Your strength is seriously so inspiring to me. I hope and pray as we are faced with transplant and the things that come with it that I am half as together as you are!

Many prayers to Lindsay. She has been in my prayers since I first heard of her story!

XOXO- Kristi

Anonymous said...

Pray for the positive results in the morning! They will come...I just know it. Lindsay, stay strong little one. We are all thinking of you out here and know you will pull through.

Mark Randall & Family

Anonymous said...

I have been reading your updates and praying for Lindsay since I first saw your blog. My youngest has DORV w/PS. She is 19 months old and every time I "meet" a fellow heart mom I am amazed at the courage and strength of our little ones. I will keep all of you in my prayers and, with God's help, I know you will be home with your special little girl very soon.
Bridget Peterson

The Hands said...

I've been waiting all day for a report and am glad that I'm 4 hours behind you so I got it before going to bed.

I think we all have those questions of God's sovereignty in allowing life/taking life. It's just in times like this that all we have to cling to is His Character that we know through His word and trust His heart. "If you then...know how to give good gifts to your children, how much more shall your Father who is in heaven give what is good to those who ask Him! Ask, and it shall be given to you, seek, and you shall find; knock, and it shall be opened to you." (Matthew 7:11&7)

We will continue "asking" on behalf of you!

PinkPoodleBoutique said...

Praying like crazy for sweet little Lindsay!! God is going to comtinue to give this sweet angel the strength that she needs!Love and prayers!

faithful said...

Oh Susie, thank you for this post. I stand in awe - I know that the Lord woke me so that I could pray - went straight here to see if there was an update - I am believing with you that the angels are performing His Word in our little princes right now - the CT scan report WILL comfirm His goodness. We have an amazing God and He is quickening the princess's mortal body even as I type.

You and Jr are absolutely amazing - what Great Faith! I am especially thanking Him for the two of YOU. Keep your eyes and hearts fixed on HIM allow HIM to continue to pour out His grace - He is an ever present HELP!! Our princess is so blessed to have "YOU" -I am praying for His strength to envelope you and keep you full of the wisdom and a knowing the right way to go.

You are an amazing Godly Woman - even in your midnight hour - you pour into us and encourage us - and your always thinking and praying for others - that truly is God's Grace that is sufficient.

Know we are standing, believing our Lindsey Will Live a long, prosperous fully satisfied life.

Susie, this picture has spoken destiny to me from the second I saw it - I believe our little princess is having a talk with Jesus and He is showing her His plan, His purpose, His desire for Her and she is chosing LIFE!!! She has a very special destiny to fulfill...she has chosen LIFE!! - because her Mom & Dad have shown her the way - she is a fighter! She will not stay down; she will rise up she has a destiny to fulfill.
Susie & Jr we love YOU, and may God continue to show you His Goodness, He is the God of Mircales. He hears and answers our prayers.
Thank you for sharing your heart and allowing us to see the mighty work He is and has done in you and through you = You are a glimpse of Heaven Girl!!!!

Anonymous said...

Thank you so much for the post. We have been very worried. Praying for good CT results and no more seizures!!

So if the CT results show no bleeding, does that mean that there is no damage and her brain function is normal?

It just amazes me how strong you are, and even though God has given you a lot to deal with you still have room in your heart to care about and post prayer requests for other people!!

We will continue to pray for you and your family.

Sarah (Pierce) Holderbaum

Holly said...

Praise the Lord that the CT was good!

Anonymous said...

I missed the posting last night-so had to get on early this A.M.-couldn't go to work without knowing..GOD BLESS YOU ALL! your strength is amazing. More prayers and good thoughts sent your way.
Dianne Jewett and Family

Stephanie Winter said...

Trust in the Lord with all your heart, and lean not on your own understanding!!! He has a plan... not for us to understand! Stay strong Lindsay girl! We love you! GOD IS POWERFUL!! FEAR NOT!!!
steph and family

Amy Meeker said...

Oh yeah! Thank you for posting and updating all of Linsday's blog stalkers. I feel like you guys are part of my family.

We will keep praying for more miracles.

The Meekers

Alison and Rich Lee said...

Oh Susie, words cannot describe the emotions and thoughts you must be experiencing right now. I can't even describe my own emotions over this right now so I cannot imagine the depth of what you are going though. I am on pins and needles waiting for results. I so think the same think that Elaine said. Don't feel that you owe any of us anything. If it is too painful, stay away from the computer. We will keep praying without ceasing wether we have a new update or not.
We love your guys!!! May you have a good day today!!!!!

Anonymous said...

Keep fighting Princess!! Our prayers go out to you!

Love, The Martin Family

Anonymous said...

Thank you for the update....we are all so worried and really appreciate you letting us know how she is....
So far, so good considering how bad it could be....we are so glad that her tests are coming back with good results. Can't wait for more good news! Take care of each other...
Cheryl, Craig, Clayton and Gracie

Stephanie said...

Thanks for the update...I can't imagine going through all you are right now and finding time to sit down and blog. Know how grateful we are for your family and you for letting us know how Lindsay is doing! Praying those final results of her cat scan come back fine this morning and she has a wonderful day today!!!!! Praying for you all this morning!!! Love and hugs!

Anonymous said...

I have seen that "organized chaos" in progress. It is awesome. My daughter Linda Marie born close to the time your grandma Linda Marie was born. she spent some time at Ann Arbor and updating to friends and family was a release for me. I have been reliving some of what you have been going through.All the prayers and support were what helped me get through a rough time.I put Lindsay on my church's prayer list and have many others besides praying for all of you. Hang tough God Is on your side also. cousin PAJ

Anonymous said...

Suzie, Thank you so much for the updates! I know it takes time away from the Princess or sleep time and both are Priceless! You are all in our Thoughts and Prayers! Hugs, Sara Dziewicki

Megan said...

Thanks so much for updating! Praying for your family and Lindsay!

Anonymous said...

Thank you for the update Suzie. When I got up it was the first thing I had to check. You all have so many people praying for you! You & JR should be so so proud of what great parents you are. You have set such a wondnerful example of "pure" parent love for your children. Our family continues to pray for you. Mimi Willson

Rachel Dominguez said...

So glad to hear good results. I still don't understand why this is happening (the seizures) if the heart is good, but whatever the case may be, PTL for no damage to the brain.

You are all in my thoughts and prayers daily.

I was not at work yesterday, due to illness, and the only thing I could think of was Lindsay and wanting to check on her (I dont have computer at home). I was praying so hard that when i came back to work today and pulled up Lindsay's blog, that there would be better news than what I read on Monday.

Love you all-

Anonymous said...

We are praying for Lindsay! We hope you hear good news from the neurologist today and the ECMO trials go well.
You are truly in the very best of hands at U of M- they are all amazing.

Sarah Decker

Tina:0) said...

Praying with everyone else that the CT results confirm good news!

As a couple of other people have said... UofM is amazing! From the looks of things, quite a few of us have experienced that "organized chaos"! They're the best!

Tina & Vaeh:0)

Family Scads said...

Lindsay will continually be in my prayers. I am also a mother of a heart transplant baby that has had numerous setbacks since transplantation....one setback has been a seizures caused from a stroke (the reason was because of a blood clot and bleed in his brain). I know how your heart must be aching and I want you to know that I am thinking about you and pulling for your little sweetie.

Keep fighting Lindsay!

ann said...

Praying, praying - wisdom and clarity, kind and gentle hands and voices, persistence and strength, a spirit of peace and confidence that can only come from the Father. Also a fierce Mama - go girls, both of you.

The Simmons Family said...

PRAYING that Lindsay comes off ECMO without a hitch today! Also.. praying for good CT results.

My thoughts are with you.


Sarah said...

Steve and I are praying for you Lindsay Girl ~ keep it up little one! You are loved!

Natalie♥ said...

Any new updates on Lindsay today? I am praying for a good day.

Anonymous said...

Praying that today brought news that was positive.

Amanda Groulx said...

I hope everything is going well. We are all thinking of you!

Amanda, Ryan, Sonora, Maizy, and Owen

Anonymous said...

Suzie & J.R.,

God's eye is on the sparrow, and I know He's watching over Lindsay and all of the Dean family. May you continue to be lifted up by the prayers of so many friends. Go, Lindsay, you can do it!

Shauna Collison

Peggy Leonard said...

Suzie, JR and Lindsay
We are praying so hard for you. Bunny and Genie

Anonymous said...

Thinking of you all the time...always praying for our special friend Lindsay and her family!
mom to angel Ethan-

Anonymous said...

Praying, praying, praying for you all. Lindsay is so strong she is going to do well.


Will pray for a good report from the CTScan and strength for Mommy and Daddy...you are both doing an awesome job.

Toronto, Ontario, Canada

Travis and Kristen said...

Always thinking of you and praying for you!

Suzie you have the most beautiful words to write - your strength is definitely being shown.

Always, The Davidson's

Anonymous said...

Suzie and JR

Lindsay is a fighter.
She has overcome so many obstacles.
She will overcome this one.
My tears, thoughts and prayers are with you and your family everyday.

Jodie L-M

Sheridith said...

You have a beautiful daughter and I wil be praying for her to be completely healed and loving life!!