Wednesday, February 4, 2009

Eventful last few days.........

Lindsay with Uncle John and Aunt Pam from Iowa. Cousin Chris came too but didn't get him in a photo. Thanks for coming to see me!!
Lindsay with Uncle Rick from California.


Lindsay with Grandma

Lindsay with Kirk




Lindsay with Jody
What is impressive is that she was able to stay in the same outfit for all the visits! ha ha
Subject #1~Needless to say, Saturday was a wonderful day! Having visitors here in Ann Arbor was great and we really enjoyed talking to some other people besides nurses and doctors.......NO OFFENCE to our wonderful medical staff! :-) Lindsay was definitely tuckered out but was able to nap between visitors. She was awake and smiling for everyone! I have posted photos of the great day! We love you all! Yes, Aunt Debbie and Jennifer, we missed you too!!
Subject #2~ As some of you may know, I went home for a few days in order to attend Cole's school conference on Monday evening. The boys, JR, and I headed home on Sunday and Lindsay was doing just fine. Just before we left, she had a leak in one of her PICC line extensions and the result of the was that it needed to be re-wired. When we all arrived at home, I called to check in on her and the re-wiring was going to take place on Monday at noon and has to be done in the cath lab of all places. Now, we know the princess does not do well in the cath lab so the decision was that I was headed back to A2 Monday morning to be here for the procedure. Chances are that she would come back on oxygen, etc. Well, because she was having increasing temperatures but not officially a spike, they went ahead and got on top of getting cultures to see about an infection especially with the new issue with the PICC line. So, the culture came back as a "possible" gram positive. hmmmmmm. Because it was a possible, they drew another and still waiting on results from yesterday's and today's. She will need two negative results before they re-wire the line in case the infection is in the PICC line. Otherwise, we would have a HUGE problem! So......we wait. In the meantime, Lindsay had to have another line put in in order to get her Lasix and Diuril. Because milrinone and the diuretics are not compatible, it is necessary. Well, that line was in her arm, and today it clotted off. So, she had to get poked again and now the line is in her foot. So far so good with this one. Also, they are not too crazy about getting blood gasses from her PICC line in fear of loosing it, so they have to poke her heals. Her poor little heals look like pin cushions! So, pray that the cultures come back negative and we can get going on re-wiring this PICC line and then back to normal for her.
Subject #3~ We did have a meeting with the transplant coordinators last Friday. We talked allot about plans for moving forward in finding Lindsay her heart. Thus far, Rituxin has not worked that great. It is working but not well and fast enough. There are other medications to try when we need to but they are very harsh and actually have "chemo" consequences such as hair falling out, vomiting, etc. We are not to that point yet, but it is out there. Another thing that we learned is that latest studies show the Rituxin is really pointless to use more than once a month. So, that is what we will be doing. Apparently the new tissue specialist, or something like that, was in town and Dr. G and Meg spoke allot about Lindsay. In the meeting, we also spoke allot about her trying the hemi-fontan again. They said they would speak to Dr. Devaney(surgeon) about it and get back with us with what he says about it. Really, the cardiologists could agree that she couldn't do it but it is really up to Dr. Devaney. The surgeon really has the last say if things make sense. Well, we heard today that the hemi is officially off the table. Her pressures are just way to high and that we would most likely end up in the same boat as last time. Talk about being bummed out today!! Now, transplant IS our ONLY option. So, please continue to pray that we find a tissue match for Lindsay and that she will be able to come home with us. We know God can work miracles but just praying that Lindsay is on that miracle list to be checked off....and soon! On the other side of this, we are praying for a heart and that heart has to come from come other little baby. I cannot, even still, think about the pain another family will have to go through in order for this to happen. This pulls at our heartstrings in ways that are unimaginable. Today, of all days, I wish I could get a preview of what God has planned for Lindsay.
I think I have given enough information today that will last everyone a while. Enjoy the photos of the princess. She is still a very happy baby and we are thanking God for our good days with her.
Much love to you all~
Suzie
Prayer Request: I came across the blog of soon to be born Lilliana the other day and proud to announce that she came into this world in the wee hours of the morning today happy and breathing on her own. She too has HLHS. Please pray for this family and the endeavours that they are about to come upon. They have her in the NICU right now and just evaluating and deciding when to do the Norwood. Please feel free to follow their journey along with me.

14 comments:

Anonymous said...

I've been faithfully checking your blog for an update, but had hoped for better news!

But your little girl is such a fighter and with such love surrounding her, she can't be in more capable hands.

Suzie and JR, we'll never be able to express our admiration and pride in you and how you've handled this difficult process. Someday all our your children will be able to appreciate all that you've done for the three of them!

Our love, support, and prayers continue as always...

Debbie and Rick

Maggie Geiger said...

As always, wishing that my arms would reach to Ann Arbor so that I could give you a much needed hug. We will continue to pray that Lindsay is able to receive a new beautiful heart.

Love,
Dan,Maggie,Ben,& Alli Geiger

The Simmons Family said...

Bummer about the Rituximab. They say it's not HIGHLY effective which is so frustrating. I'm praying for Lindsay to get that perfect heart soon!! Owen can wait on his a bit longer... he has never been better. I'm grateful we're at home, but we're also a status 2... which they say means the odds of getting a heart now are pretty much non-existent.

I'm glad that Lindsay is happy and I hope that they get the PICC line figured out soon!

Always thinking of you!!
Andrea

Anonymous said...

First of all. If you are ever unable to come to AA for some reason but want an advocate for lindsay you give me a call. I'm only an hour away. Second of all I'm sorry about the hemi, I know that seems like a lot easier route to go but that's not the plan for her. I pray things go well for a transplant and that God's plan speeds up a little bit. It is said that we are to be patient with god but I think it's okay to push a little. Hang in there. Call me if you need a break or a hug.

Michelle Dickson

The Davidson Family said...

Hey Suzie

I was so excited to see an update but what a crappy one at that. I'm so very sorry to hear the recent news. We proudly wear our "pray for Lindsay" bracelets and look forward to attending the Sweet Heart dinner. We think about you everyday; you'll continue to be in our prayers.

Love, Kristen & Travis (and the kids)

Tina said...

I had a feeling today, that the next post would not be the best. Have been watching all week and nothing. I emailed your mom last thing this afternoon asking about no blog update. All I can say is we are praying and hoping for the best. Oh yeah and I forgot to turn off the music, what a mistake that was!!

To everyone else, that is reading this don't forget to hug your children tonight and tell all your family that you love them.

Love ya,

Steve and Tina

PS: what beautifu pictures

The Butcher Family said...

Thank you for the informative update...we were hoping no news was good news so far that's been the case! I love all the pictures of Lindsay and her special visitors! She is just too darn cute! Oh my goodness, I could just eat her up with a spoonful of sugar!
We continue to pray for her angel heart to come in His perfect timing...knowing that patience can grow thin and you have been so, so strong for your daughter...you, Suzie, deserve this almost as much as your daughter, you know? You amaze me and make me want to give more every single day!
I love you so much and can't wait to hear your voice again soon!

Love to you~ Rebecca

Stephanie said...

Keeping Lindsay in my prayers!!! Praying for a tissue match very soon so she can go home with you where she belongs! I can't imagine what you are going through but just know that we are all praying for you!

Hugs!

Anonymous said...

I will be praying for the princess allthouhgh I must say it took you awhile to update, just kidding I know how hospital life is long and busy. As far as praying for the heart cant imagine the pain for the other family but I will continue to pray that you do find it so you can go home and be with all your family there. That much I can feel and I pray for you and me that we will soon get what we have been waiting for.
Love always,
Miguel and family.

Anonymous said...

Man--what a bummer to hear about the hemi that won't happen. I was really hoping for some good news on that front. Hang in there--we're always thinking of you.

Lisa--pod A

Joshua said...

Suzie~Boy that is a lot to take in! I know how hard this is to deal with...first hand! Hang in there and know that there is ALWAYS HOPE! My prayer was always that a family would just say 'yes'. I couldn't feel like I was asking for another child to be called to heaven for my baby to have a shot. I could however pray that in the most dire of circumstances they would find the strength to just say 'yes' to organ donation. Know that we are praying for Lindsay and your family.
Leah (Joshua's mommy)

Jen Lindsay said...

My mom and I are awfully jealous that my dad got to get his picture taken with a real life princess!

I'm sorry you didn't get good news this week. You have been so unbelievably strong - hang in there.

Anonymous said...

Suzie and family, You are all still in my Nightly Prayers. What a cutey she is - those eyes just take you in! Love her! God works wonders and he will work a wonder/miracle in her too! Love/Hugs! Sara Dziewicki

Amanda Groulx said...

So the hemi can't happen...bummer but it was a cluster before anyway so at least when she has surgery it will be for the real deal. Its just a matter of time..as soon as the infections are cleared up and she is healthy and ready she'll get a heart. I'm sure you guys are WAY WAY more than ready but just try to be patient and hang in there.---this of course is coming from one of the most impatient people in the world :) Oh well its always been my motto that its better to give advice than to try to follow it.

She is getting so big and prettier by the day! We're always thinking of you all. Take care.

Love,
Amanda, Ryan, Sonora, Maizy, and Owen