Lindsey called us at 12:30 last night so I biked over to spend the night with her. Just for good ole' times, I made my '3 chair' combo bed and crawled in for a few hours of 'sound' sleep. She was up several times and didn't sleep well. This morning Katz took out the last chest tube and did a dressing change, she went on a walk around the CVICU, and had lowered the amount of oxygen she was on. She was and still is a bit grumpy, irritable and not in the mood to joke around (yet). She was cleared to go to 3 West, so we are all excited and ready to bust out of here.
Sierra didn't go to school today and had checked in to get the plasma pheresis port placed. It is basically a huge IV placed in her neck/shoulder area. They put her under general anaesthesia and stitch the port in place. She will have this port in for over a month as she receives these treatments. The procedure was postponed until this afternoon and finally went in at the same time Lindsey was doing her 'thing'.
My Mom had Gage back at the RMH and never did come over. Today it was a blessing to have her here watching Gage, getting Hunter off the bus, and being with Megan.
Then at 2:20 everything went crazy. Thank goodness my awesome wife was here. Lindsey started acting weird, not speaking in complete sentences, not breathing well, and not able to swallow liquid or her meds. She lost focus and was not responding to Stacy or the nurse. It had been slowly building over several hours but came to a head a little after two o'clock. Stacy was sitting her up to go potty and Lindsey wouldn't focus, eyes not following, no balance, and her oxygen started to drop. Stacy layed her back in bed and she basically stopped breathing. I didn't know how to respond. I didn't want to be there, but I didn't want to leave either. It's a horrible feeling to have. Doctor Axelrod (the one that is 'Where's Waldo') was on and took over. He was all business! At that moment, I received the call that they were ready for Sierra, so her and I got the heck out of there. They bagged Lindsey and put her back on the ventilator. I stayed with Sierra, checked her in, and waited as they did the procedure. I was to scared to check in on Stacy. I just sat there in the waiting room. It's a lonely place to be.
Stacy stayed with Lindsey and gave me a report around 5:00. They did an MRI and confirmed she had a 'PRES' episode, a seizure relating to a common reaction to cyclosporin, one of the anti-rejection drug. They have since gotten her stable and took her off the vent at around 7:30. She is still very sleepy but is responding to questions. The MRI did show signs of some swelling on the brain, and a little bleeding, but Axelrod assures us this is reversible and does happen with some transplant patients. They are of course going to stop the cyclosporin and start her on prograf, they are also going to start her on an anti-seizure and high blood pressure medicine.
So here we are, I am here with Sierra who is recovering from the procedure and ready for the plasma pheresis in the morning. Stacy is 2 doors down with Lindsey watching and helping.
Honestly, that was a very lonely and helpless experience. I had walked with Sierra down to the lab, then sat out in the waiting area scared to death to call Stacy or walk back and check on Lindsey. I just sat there and sobbed as friends and family sent comforting messages on my phone. Lindsey will have a tough road ahead of her. For Sierra, plasma pheresis with IV therapy is their attempt to save her transplanted heart. They have made it clear that this procedure may or may not work and that there are not a lot of options after this. The true reality of heart transplantation once again sunk deep. Nothing is guaranteed.
Donna from the transplant team came by while I was waiting for Sierra. I was still choked up, but all the discouraging thoughts came flooding back. I mouthed the words, "Will we ever go home as a family? Will I ever shave this 'thing' off my chin? Will I need to start my chin hair over for someone else?" She didn't offer any answers. Nothing is guaranteed. Just comfort that we are good parents doing the best we can to help our children.
A CVICU is a tough place to be. In the last 5 days we have heard the 'code' alarm go off twice. If you have ever heard that and seen the reaction, it will change your life forever. It's a horrible sound as you watch medical staff running and working to save and preserve a child's life. The only reason I bring this up is to remind myself that it could be worse, we are doing good, our kids have options, the doctors know what to do. I must trust their judgement and decisions. I must have faith in God, that he hears each one of our prayers. He knows the pains and suffering of his children. He has a plan for each one of us, and our days are not numbered less.
Tonight I pray the Lord will watch over Lindsey, keep her stable, and allow her to recover. I pray the doctors will have the wisdom and insight to know how to treat and monitor her. Also, I pray the plasma pheresis and IV treatments will work for Sierra.
Dr Axelrod, (Where's Waldo) this morning before the 'fun' began.
On her morning walk with Mandi, Shannon, and Sandra
Back on the Vent
Sierra's fancy 'little' port.
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40 comments:
Much love and continued prayers for your family. I pray tomorrow will be a better day.
Wow man, that is one heck of a rotten day! Do you remember fixing fence in the rain on the back side of the grey place about 17-18 years ago? You said something to the effect "you really know you are wet when the rain is running down your ....." Well, I'd say you are all getting pretty wet! Lets hope and pray God sends some sunshine your way!
Love you bro.
Thanks for the post Jason. What a day for you guys, and ugly day. I am glad there was a realization from the docs about Lindsey's reaction. That seems to be the only comfort about today. I agree with your team member-you are good parents doing what is best for your kids. You have power there, and you are using it. We love you all and pray for you all. You have great kids, and I love that wife of yours. She is stellar.
Lousy for sure. Could.not go to bed until I knew how lindsey was. Thank you for the update. As always our thoughts and prayers are with each of you. Glad things are calm and more positive. Sleep. Swansons
Jason/Stacy, I am so very sorry that you are having to go through all that you are going through. Please know that Riley and I are thinking about you and praying that God will watch over all of you and keep you in his care. Please tell Sierra and Lindsey that we are thinking about them and hope they get to feeling better very soon. You are all amazing. Still saying extra prayers and will continue to do so until the day that you are all health again and we have you back here with us. Riley misses Megan and is really glad she might come on the Newport trip with the class. Take care of yourselves and please let us know if there is anything we can do.
We wish you did not have to go through these lows and pray that tomorrow will be a better day. I know there were disappointed boys tonight after their loss to Sherman but your family helps us all keep things in perspective. your family is so amazingly strong! God bless you. prayers continuing! Love the Hamann's.
So thankful this day is over! Lindsey and Sierra are two tough girls. Praying for a calm, stable and restful night for everyone.
Jason and Stacy,
I am so amazed by your faith and your endurance during these most difficult days. Through it all, your children are so blessed to have you.
My husband and I read your posts and include you in our prayers every day. Please know that many of us are praying for the best for all of you.
Anne and Mike
La Grande
There are not words to say how sorry we are that you all are having to go through this. Many, many prayers coming your way. Your family is on our minds and on our hearts. Hang in there.
So relieved that Lindsey is doing better. What a testimony of the power of prayer! And so much admiration for the knowledge and compassion of the medical staff taking care of your children. Hoping you all have a restful night and a better day tomorrow. Say hi to Leslie for me!
Johanna Anderson
Wow. I'm praying for a good night for all of you. Hang in there!
Pam (Olsen) Whitmore
Jason I am really glad to hear when you break down. And I hope Stacy is able to do the same. This is definitely an endurance test and you must remember to "sharpen your ax" so you can finish strong. As always I am praying for all of you.
Love,
Rachelle
P.S.
I love the way you write your posts. It is the real you just as if you are talking. You make me laugh and cry at the same time. Thank you!
Bingham family -
I only know you from following a neighbor's facebook posts to your blog. I have kept up with your story and have been continually amazed at your strength and grace in the face of your trials.
I haven't ever commented before, but I just wanted to make sure you know that there are people out here praying for you - praying hard! Your friends and family of course, but also complete strangers that have been so touched by your story and pray daily for you and your children.
May angels be with you to help comfort you through the hardest times, when discouragement and fear threaten to take over. Praying for a better day for you guys tomorrow!
Kim
Keep plugging away!!! Those dark days will close and a beautiful sunrise will come. Sometimes the waiting on Gods timing is the hardest part. Im not sure why you guys were chosen tour these challenges but know you have a world of support here on Earth, a brother who gave up everything for us, and a Father in Heaven who loves you even more than you love your children!!! Thanks for the updates they are truly inspiring!!!! That chin hair will come off and stay off soon!!!!! Lots of love and prayers! YOU CAN do this!!!!
The words keep ringing through my mind and heart; "...and a little child shall lead them". How many times have Lindsey and Sierra lead hundreds of people to participate in hundreds, perhaps even thousands of prayers?
I am thankful for the power of prayer and faith and the priesthood. I am thankful for you two loving and selfless parents who are doing EVERYTHING in your power for your children. And I am thankful for a loving Heavenly Father who sent another blessing your way today. I am thankful for skilled doctors, and I am thankful for the gifts of life and family love.
A very important part of prayer is gratitude for the previous blessing. Tonight, we are saying many heart felt prayers of gratitude. We love you! We Believe! Love and prayers from Korea
Jason and Stacy, you are such wonderful parents and my heartaches for everything you are going through. You and your family are an inspiration to all. Know that all of us are with you in the good and bad times. We sit by the computers on pins and needles waiting for your posts. Although we cannot physically comfort you we pray that God will wrap you in his comfort and heal each of your children. We love you and want you to know you are a part of many families who are praying for your family. With much love!
Thanks for sharing your feelings Jason. They make total sense and I can only imagine the pain you have on days like these. You are strong, God is stronger. You are so right, there are no guarantees except for the promises of ultimate peace through God's Son. I pray you'll feel alot of that now. Praying for all of you danggumit!
Oh - my stomach had a knot in it when I checked your blog this morning. I was awake in the night and almost got up to check, but prayed instead, and fell back to sleep.
Just wanted to share that last night I had the commuter teachers over for a quick dinner before the playoff basketball game. We prayed together as a group before we ate - lifting up Lindsey and your sweet family. As one of the previous posts said - "a little child shall lead them." How often does a group of teachers pray together? I don't know, but it felt special and like an extra bodning experience for hold sacred space together on your behalf.
Love and more prayers -
Karen Tannehill
Oh - my stomach had a knot in it when I checked your blog this morning. I was awake in the night and almost got up to check, but prayed instead, and fell back to sleep.
Just wanted to share that last night I had the commuter teachers over for a quick dinner before the playoff basketball game. We prayed together as a group before we ate - lifting up Lindsey and your sweet family. As one of the previous posts said - "a little child shall lead them." How often does a group of teachers pray together? I don't know, but it felt special and like an extra bodning experience for hold sacred space together on your behalf.
Love and more prayers -
Karen Tannehill
Prayers for a better day today. God be with every one of you, hold yall in His Arms. God Bless Us All.
At a loss for words..but sending hugs to you all.and praying that each day gets a little bit better
We have spent many good laughs together over the years and had some great memories. This is my share for the day. Jason, remember when you were running for student body president and we were all gathered in the MP room? The podium was way up at the front and the other students were all sitting on the floor - way in the back. The other speaker gave his speech. You grabbed that podium and slid it all the way to the back to be closer to the audience and share your message. That was amazing and sent a strong message. You won hearts that day. You rise to every occasion. You do it, every time! So, continue to grab on and deliver that strong voice to your family and those that will listen. We will support you no matter what.
Kerri Smith
I'm so sorry about your day. :( I can't imagine how overwhelmed you all must have felt.
I've been thinking a lot about Megan and the Newport trip. My heart aches for her, too. Please text or call sometime when you have a chance if you think we can work out some logistics to make that happen. I'd be willing to pick her up in PDX and drive her over or she might even be able to fly right here to Eugene which would make the drive short.
Anyway, thoughts and prayers are with you always.
The Fritz's
My prayers go out to your family several times a day. You are awesome parents so strong. You give me strenght, we miss your family greatly. We are counting the days untill you return together. Stay strong in prayer God hears your prayers. Keep the Faith.
More prayers from folks that you don't know. We camped out in LPCH about a year ago and are thankful that you're surrounded by their amazing resources. Blessings from home to you~
In neo-natal intensive care, we did hear those alarms and you are so right. Sometimes life is one step at a time, sometimes one moment at a time. My prayer for all of you today is for many peaceful moments.
Just know that we care and are praying very hard for you and your sweet family.
I cant believe how drawn i am to your situation... my husband and i moved to north powder with our 6 kids over spring break last yr. My daughter Jasmine was in Lindsey's class:) We had never met or heard of your family and what was going on but since then your family has been mentioned and prayed for everyday in our house! Jasmine is always talking about Lindsey and my other daughters are telling me what the teachers are learning... thank goodness for the love these teachers and staff have shown to our children who are im sure scared of the "unknowns" and "what ifs" i was sick to my stomach last nite when i read a post about sweet Lindsey....i can honestly say i also put myself to sleep by praying everything would be ok when morning came:) and yes....that was the first thing i did...checked your blog for an update....what a relief!!! Keep doing what your doing cuz your strength and integrity is shining ever brighter!! Tell Sierra my girls look up to her in admiration! What a strong child!! Sending hugs to all of you!! Megan..YOU ROCK!!
best wishes and prayers still & strongly going your way.
Although I do not know your family personally ( I found your blog through a friend who is a relative of yours) I really like reading about your experiences. It is very touching and I think you guys have a good handle on everything and a good attitude. I am not so sure if I would be able to hold it together as well as you guys do. What a sweet family you have! I pray for your family and, as a mom, it breaks my heart to see your children go through this. I think all moms see all children as if they were there own. Our trials make us stronger and it takes a lot of faith. Keep your head up. We are praying for you! Good days will come!!
Yes, I agree Tuesday was a lousy day and so I prayed for today to bring renewed hope, for Lindsey and Sierra to gain strength, for doctors and nurses to provide the best care, and for comfort for each of you . Keep breathing...one step, one breath, one day at a time. Thinking and praying for each if you. Loves, hugs, and sincere prayers xoxoxoxo
Its alright to feel the way you do. I didn't know life would be no guarantees for happiness until my disabled child came into the world. Let the ocean of tears come down and stand right back up to be there for your family. They always say, parents are the glue to hold the family together.
Hoping today will be a better day filled with laughter. I am glad you have your faith and hope because I lost it so long ago.
Hoping you all can go to your physical house soon! Thank you again for sharing your days with us. I don't know if these words can bring any comfort but know you are all thought of.
Take care,
Nicole from Rosemead, CA
Jason, I was sick all night last night after reading your facebook post. I feel better today now after having read your update. I would like to share a video with you that was uploaded by the LDS church today. I thought of you and your family as I watched this. I hope this helps lighten your load.
http://www.youtube.com/watch?v=xdN8rfwW3SI&feature=em-uploademail
Jason and Stacy..last night after reading the blog I just couldn't respond, what words could I say to make it better? You expressed it all, Jason, and did so in a way that again, touched our very souls. So I prayed, and continue to pray, and believe with all my heart that today is going to be better. Holding all of you up, and will continue!!
I have been reading this for a few week's now. I have a 6 year old with HCM, and just wanted to drop by to say that your family is so very STRONG. I read your post's with tear's in my eye's, but get filled with so much HOPE. You are in my thought's and prayer's. Word's can not comport you all, but you are such an amazing family. I am honored to have found you! It is a long and lonely road having children with "sick heart's", and you have helped me through some dark time's by just sharing this !! You show me that people can get through the though time's, little by little, good or bad. God bless you all! I will pray that all go's well, second by second. Thank you !!!
The Savior says it much better than I could:
My Son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends do stand by thee and they shall hail thee again with warm hearts and friendly hands. (D&C 121: 7-9)
Praying hard today for Lindsey and Sierra!! Also, praying that HIS Spirit will give you peace and strength! Randy at UNC Hospital
Sending peaceful and healing vibes to you and your family. Your strength is amazing.
Your strength and courage are admirable; I cannot begin to imagine what it would be like to be in your shoes! Your story is an illustration of how important it is to live in the moment and be grateful for every day we spend here with our loved ones. Sierra and Lindsey are in my prayers!
Prayers for all the family. Lindsey is lucky to have two parents that show strength and I know Lindsey will be strong and face whatever is put before her to survive. Sierra and Lindsay are special young girls and I pray God allows both to grow and become great young ladies. What strong parents these girls have.
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