Ok, yesterday was a long day of information overload. We were in bed by 10pm instead of our normal 2am just to give you an idea of our exhaustion. We sat down yesterday with some of the transplant team to discuss our options with Lindsay. Don't be alarmed, we are not quite there yet, but at some point in time because of her heart function and leaky tricuspid valve, we will have to go the transplant route. After a long discussion and many questions asked and answered, Jr and I have decided to place Lindsay on the list before we leave the hospital to take her home. Yes, allot of you have questions, so I hope this explanation helps......
If we take her home in a week or so and then have her evaluated as planned in 2-4 months time, they could potentially tell us that she will not be able to handle the hemi again and will want to put her on the transplant list at that time. Not knowing what her condition will be a few months down the road, it may be too late for her and be too sick, and this way if she hasn't had an offer for a heart, she is then higher on the list and the chances of getting one are much better by that time if we do it now. The only down side to this, and Jr and I promised that we would be mentally ready, is that realistically we could get a call next week. Now that is just a "for instance" but who knows, it could happen. If that were to happen, we cannot turn it down whether we are ready or not. It is a BIG thing to decide to do this but so that all of you understand, she would have eventually needed this anyway. So, no big shocker to us that we had to have the meeting yesterday. We are just having to talk about it sooner than we thought. Her function now was the stick that broke the ice and who's to say that it will ever get better. Dr. Devaney talked to us briefly this afternoon and agreed that we have made the right choice. He was starting to head in that direction for Lindsay anyway. So, that made us feel even better about that. Ok, ask away because I'm sure one of you has a question that I didn't cover....mmmmmm Amanda maybe?? ha ha Please feel free because it may help us ask a question to the docs that we haven't thought of. You never know!
Like I said, allot to digest so hopefully I have explained what I needed to so that you know what we have coming ahead for the princess.
Oh my gosh, almost forgot!!....the princess was extubated today!! That's right, no ventilator!! She looks so good and so we will be able to hold her. I'm thinking tonight. So, I will post photos again when we return from our evening visit.
Keep the prayers flowing. The man above loves us sooo much!!!
Love, Suzie and JR
Thursday, October 16, 2008
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I am keeping Lindsay and your family in my prayers as you head down this new path...
Dear Suzie and JR,
We know this was a huge decision for you and we are so proud of your strength. Whatever happens as you go forward with your beloved princess, please always remember that you made the BEST DECISION WITH THE INFORMATION YOU HAD...AND DON'T LOOK BACK and say "what if". You would drive yourself crazy...just move forward with faith and confidence. Please know we all support you and will pray every day that Lindsay stays stable until the next step.
With love and sooo many hugs, Elaine and Bill
Ditto to what Elaine just said !!! You have more love and support that you will ever imagine and we will keep praying for you all. Lindsay is SO blessed to have such loving, caring parents who want nothing more than the very best for her. You have had so many challenges this past several months - yet you've come thru them all stronger than ever and you will again, this time...and so will Lindsay. We are here for you and love you very much.
Shannon and Brian
My thoughts and prayers are with all of you, as you travel this new road in your heart journey. Glad to hear that Lindsay was extubated today, every step in the right direction is a step closer to home.
~Stephanie and Braeden
You answerd all questions very well. I agree, there is a reason for this decision never forget that! We are all so proud of your family and Lindsay's strength! Keep up the great work.
Yay, Lindsay, on the extubation! I can't believe what she's been through these past couple of weeks. What a little star. My heart goes out to you and the decision you had to make. That's such a tough one. We all realize that transplant 'could' be an option in our babies' futures, but to really have to deal with that has got to be so complicated and exhausting. You are such a strong mama who is a wonderful example to us all! Keep up the awesome attitude and continued faith. Love to you all from Washington! Your "matchy" family...(same order, ages of kiddos, with a princess as the caboose!)
Katie, Maddie & boys
I just wanted to pass on a song I LOVE right now and it is so fitting to your new situation... "Hope Now" by Addison Road. You can get it on playlist. I hope it brings you HOPE and strenthens your trust in His plan.
You amaze me, Suzie! You have selflessly made the best decision for Lindsay Loo...she is so blessed to have you and Jr. I have known two HLHS babies to recently have transplants (one 8 months old and one 3 years old). Both have done very well. We will pray for you and Jr as you mentally, emotionally, and in many other ways prepare yourselves for this big step. We know she's a strong princess!
Praising God, too, for her extubation and hoping you have her in your arms right this moment!
Love to you~ Rebecca
PS. The princess has a little package on the way! :)
JR & Suzie --- as always we will continue praying for Lindsay's strength and yours.
Wonderful news!! I'm so glad that she's extubated. Hopefully you guys are holding her now. I think that you guys absolutely made the best choice- you obviously have God on your side, now its just letting the surgeons do their thing and getting her medications just right so that she can thrive. And questions---I could fill up this page with questions......what they have already done is nothing short of amazing! :)
Thinking of you and praying for you all!!
I found your blog through Annabelle's and I wanted to stop when I saw what you were going through. I am going to keep Lindsay and all of you in my prayers!
I am going to add you to my blog roll if you don't mind so I can continue to check back and pray for you!
Suzie, you are right. You have a lot of information to digest right now. Remember to pray. I know it sounds too familiar to you. But as hard as it is, lift up your worries, lift up your concerns, ask for his guidance. In his time, and in his way, he will guide you to make the best decisions for Lindsay. He has not failed you and he never will. It sounds to me like you are doing all the right things for her. You are being a strong voice. Way to go Suzie. I'm sure when you get her in your arms you will feel like you are holding a piece of heaven again. We love you guys. Continued prayers!
Suzie and Jr, We're so happy and thrilled for you and Lindsay!! She is such a trooper with all that she has been through. I'm sure you made the right decision, and just feel right about it, the Dr.'s seem to think so. Cole was here yesterday, we played outside alot and he rode bikes Austin played basketball w/him. He was doing really great. We're praying alot for you guys, congrats on the extabutation too. Come home soon lil' Lindsay.
love and prayers, Don and Brenda
Suzie and JR,
You are constantly in my thoughts and prayers and are amazingly strong parents. You are making the right decisions and keep having faith. I'm so happy to hear that extabutation tube is off. That is great news...hope I spelled that right?
Love you guys....
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