Monday, December 29, 2008

We've been busy!!!

Hi all! Sorry it has been a little while since I have posted but we have had the boys here in Ann Arbor with us and it keeps us plenty busy. Plus, my computer decided to not work all of a sudden so I have to post from the computers at the RMH and sometimes that can be tough to find the opportunity........29 rooms and two computers..........tough.
Before I forget to add this, I'm going to do it right in the beginning. My good friend Patti has graciously given me a link to a slideshow of all of the wonderful pictures that she captured on her visit to Ann Arbor a few weeks ago. She, again, did a fantastic job and we are so very lucky to have had her to take these precious photos for us. Enjoy! http://www.pattisportraits.com/clients/slide_show.php?viewGallery=1092

Update on Lindsay:
Well, we are in PCTU again because of a potassium issue. This time she had the irregular heart rhythms and a dip in her heart rate because her K was too high. So again we are going through the steps of tweaking her and so far so good. We received the phone call the morning before last and JR and I thought it was THE call. Talk about our heart rates jumping into a high level!!! It was 4:30 am and the doctor was just calling to tell us what had happened and that when we came to see her in the morning, that she would be in the PCTU for more monitoring. The good news is that none of this is a heart issue and just regulating her potassium. We have also started her on oral feeds again so that is especially nice because we haven't done that now for over a week! She will be on 60cc's every two hours for a few days and then we will get back to the 90 cc's every 3 hours. They also have backed down on her diuretics because she was really dry. She has also not been gaining weight like they want her to so hopefully with the diuretic every 12 hours instead of every eight will help. She needs to get beefy to prepare for that heart!!!!
Again, sorry it has been a while since I have updated. We sure do appreciate the continued support and prayers for our family. Keep them coming because my husband has an incling that the heart is coming soon. Let's hope he is right on!
Love you all!
Suzie

Thursday, December 25, 2008

END OF THE YEAR TAX DEDUCTABLE DONATION

If anyone is interested in an end of the year donation (tax deductible!) to help the Dean Family, we're happy to say that we have the ability to facilitate that! If you're interested, please e-mail linda@wkzo.com for further instructions on how to do that.

Lindsay's story aired on WWMT TV Christmas Eve. Please visit http://link.brightcove.com/services/link/bcpid1111405973/bclid1137706675/bctid5750745001 to view her story. (HINT: to listen to the story, first go down to the playlist and pause the background music of the blog) Let's make it the most viewed video for Christmas Day!

The Lindsay Dean Heart Fund gave back to the community this week by hosting the American Red Cross Blood Drive, The Gift of Life, and The Morrow Foundation's Donor Registry sign up. We're happy to report that the Red Cross ran out of blood bags in spite of nasty weather and we had a record number of first time donors. We have been invited by the Red Cross to sponsor the next Parchment Blood Drive Feb. 17th. Please stay tuned to the blog for further information.

Coming soon.......Our Sweet(heart) dinner and silent auction in honor of our sweetheart princess, Lindsay, February 14th at St. Ambrose Church in Parchment. Please also stay tuned to the blog for further information concerning details.

Have a blessed Christmas Day!

The Lindsay Dean Heart Fund Committee

Tuesday, December 23, 2008

It has been the best day!

It has been a busy day but a great one despite not having our princess with us. The blood drive was a complete success and is actually still going on as we speak. So much so, I hear that a second date has been planned to get in all of the people that we couldn't do today. At total of 64 units were donated today! What a wonderful community effort.
We also just got done interviewing with News Channel 3 and Lindsay's story will be aired on tomorrow nights broadcast. Most likely at the 11pm time slot. Also, Patti (Lindsay's personal photographer) just made my Christmas! She has posted some pre-views on her blog so I urge everyone to take a peak. Just click on her link on the left to view them! Thank you so much for coming to capture these moments that we would have never been able to get otherwise.
I have also posted the video that was played while people were waiting at the blood drive.http://www.onetruemedia.com/shared?p=76f342f96fb68b30d5494b&skin_id=701&utm_source=otm&utm_medium=text_url
Just called and checked in on Linds and the doctors have decided to d/c one of her IV diuretics and do orally. She is a little on the dry side so hopefully it will help. Pretty sure that is will and then she will start to feeling like her self again. Mindy is with her again tonight and she said that she has started to smile a little bit more today.
I will update more later!
Love you all!
Suzie

Lindsay, Lindsay

Only used twice this time so must mean she is getting better! I called this morning and Lindsay has been sleeping very well and the continuous feeds are allowing her to get her much needed rest since she is a little under the weather. Her potassium this morning was 3.0 which is a little better but still not good enough especially since she is getting those higher doses every 3 hours! Hopefully we can get the doctors this morning after rounds and ask some more questions and what the next plan of attack is. Her nurse said that she went to take her blood pressure this morning, Lindsay rolled over and looked at her, smiled, and then went right back to sleep. Princess indeed! Hopefully she is more like herself today and then by the time we get back to Ann Arbor on Christmas day, she is her playful self. Man, I can't wait to see her!
Have a great day everyone! And, even if it is not Lindsay's blood drive, please, go give blood. It can save lives!
Love and heart blessings!
Suzie

Monday, December 22, 2008

Update on the princess

My last phone call was at 11:25pm and Lindsay had just had another episode of her heart rate going down into the 80's. She had also had another at 10:50 pm and they immediately drew another blood gas and her potassium was 2.4. Man, what is it going to take to get this potassium under control?! And wow, does she make it a point that she doesn't like us to leave!! Same things as happened the weekend before so we are wondering if it has anything to do with a fever, the fever breaking, and then she has these spells. It is as if her body gets regulated and working correctly again and then the potassium goes nuts because she then pees too much? I think I might get the on-call doctor on the phone tonight..................They also let me know that POD A is on call so we shall she if they decide to move her. I'm not thinking that that will be the case since we are during the week now. Last time was on a Friday night and POD A was the better decision because of staffing.
I will keep you all posted.
Love, Suzie

Home.....and allot going on!

At around 4pm today, the boys, including my husband :-), and I left Ann Arbor to come home for the Christmas festivities. I think that was the hardest thing yet. Leaving Lindsay to go to parties and open presents without her. I am just bummed tonight and trust me, because of it, I am calling constantly to check in on her!!! The harder thing though is that before we left, she had spiked a fever and was not feeling the greatest, we could just tell. She was pretty pale and was not her smiling self. Of course we spoke up and the nurse also mentioned at that time that she also hadn't slept allot. RED LIGHT!! What?!! Yep, she's getting sick. The nurse, whom we hadn't had before kind of looked at me strange and then said, "Let's take her temp again." Took it and sure enough, she had spiked. So, the whole process of cultures and then antibiotics begins. The other thing that the nurse had indicated was that she had been only keeping down 1/2 or 3/4 of her feeds. Well, in the past, if she had gotten sick, we sort of estimate what she threw up and then gave back to her what she lost. Simple thing right? Well, apparently it is now an issue so the poor girl has an NG back in her nose and will be on continuous feeds for 24 hours to see how she does. The problem is that they don't want her to end up getting dehydrated but my logic is that is you give back what she threw up, are we not helping to control that? Is it that she just doesn't feel good? or is it that mommy and daddy have the touch in feeding her? I think the ladder of the three but who am I? ha ha Anyway, we have one of our favorite nurses in Moderate Care tonight, Mindy, and we had a long discussion on what was going to happen tonight and for the next couple. That is the problem with the holidays and the medical field. Too many of our regular staff are off on vacation and then explaining things all over again to the ones taking over. Things get mixed up and not followed through with and just plain frustrating! Especially when you are dealing with a princess. Seriously, not just because she's cute either! Because she really needs things to be done just so and she has proven that time and time again. WOW, thanks for letting me vent! ha ha
The boys were not so excited to see the Grinch today at the hospital but they were certainly open to taking presents from him! ha ha We did get a photo with him that I will post later. Also, at the Ronald McDonald House, they had a room filled with gifts that parents could pick from for thier kids. We could pick one per child, wrap them, and then have them placed in our room so that when we got back to Ann Arbor, the boys will be excited to see that Santa didn't forget them there too! So cool and what a wonderful thing for RMH to do. Takes a little stress away for families I'm sure!
Tomorrow is a big day for Lindsay and the Dean family. Lindsay's blood drive is tomorrow and then in the afternoon, Channel 3 News will be here at the house to interview us about Lindsay and her condition to raise awareness about CHD's. I am really excited about this and looking forward to seeing people at the blood drive.
Hope everyone is staying warm!
Love, Suzie

Saturday, December 20, 2008

The Princess is in the Christmas Spirit!






Today she has had a great day full of eating, continuously low potassium, and lots of holiday spirit. To try and fix the potassium issue, the doctors have decided to try her on a dose at 5 instead of 4 and then do a 4.5 dose every 3 hours from here on out to see if she maintains at some point. Hopefully this will work. The boys have had a great day as well. All of the Christmas things including a short visit with Santa himself up in the Family Resource Center at the hospital. Cole did the family project in the craft session and decided to make us a Christmas tree. He did a great job and Cruz even approved of his workmanship. We then came back to the house for some chores, Cruz had a nap, Cole played in the playroom, and then a church came in to make BREAKFAST for us tonight for dinner. Needless to say the kids loved it and now I am getting ready to go back to the hospital for some time with Lindsay and her next feeding. JR is staying back with the boys at the house to play with the new toys that they got from the party this afternoon. More pictures to enjoy!

Love to you all!
Suzie


Friday, December 19, 2008

The Princess has a Christmas Tree!

Here it is folks! Perfect, just like the Princess. This was so much fun to put up! I do have to admit that I took a little of the tree idea from Rebecca with including some of Lindsay's hair bows.;-)
I found the heart ornaments earlier this year and they couldn't be more perfect! The bummer part is that we can't plug it in. Oh well, hospital rules.............
Lindsay has had a great day again and the boys had a great time in the play rooms today. Of course they saw Lindsay for about 10 minutes out of the whole day and then went and played. That gave mommy and daddy one on one with each of them and that was so nice to do. Praying for another uneventful day with Lindsay tomorrow.
Love, Suzie

Thursday, December 18, 2008

video

Wednesday, December 17, 2008

Annabelle.............

I gave this the title that I did because Annabelle is all around lately. I mentioned earlier that a little girl was getting a new heart here at U of M today........Well, she did and she is doing well thus far. She is off bypass, which is huge!, and the family is just waiting to see her. Brittney has only been on the list since December 9th! Oh, and her last name.....you guessed it......Butcher!!!! Now, if that doesn't give you goose bumps, I don't know what will. So, my take on it is is that Annabelle is working her magic to get Lindsay her heart soon! I can be hopeful can't I? :-)
Lindsay had a wonderful evening and I left with her sleeping soundly. She is a princess for sure!
Nighty night for me! Until tomorrow.....and Merry Christmas to Brittney's family! (I now have her linked under Heart Babies.......even though she is not a baby!) :-)
Love, Suzie

Tuesday, December 16, 2008

Having Hope

I have titled this post Having Hope because something wonderful has happened and we hope the vibe continues on to Lindsay. A little girl, age 10 I think, got her new heart today. She is surgery now and praying that everything goes well. I do not know them at all but I will try and catch up with the parents to see if they have a carepage or blog that we can follow her on.
Lindsay has had a GREAT day! Her feedings have gone great and still no fevers! She is smiling, trying to play a little, and working hard at her new skill of rolling over. She has developed a new trick as well. She waves with her foot! It is just too cute and the way she looks at it would just crack you up......."hey, I not sure but I think this thing is attached!"
The docs have again adjusted her potassium to every 3 hours and lessened the dose of course too. She was having to many lows and then it would go way high. So to try and eliminate that, that was their decision. They now only have to check her levels every 6 hours which means less blood coming out of her! They also decided to give her her diuretics every 3 hours as well. Oh, and they eliminated her digoxin. I didn't know this before but apparently digoxin can cause arrhythmia's and because her dose was so small, that she would be safe without it. If she seems to act like she needs it, they will just up her milrinone drip to compensate.
Tomorrow is a big day as well. She will be given her next dose of medicine to try and reduce her antibody levels. This medicine is called IVIG. Apparently there are several kinds of IVIG and the one that they will be giving her is called Gammagard Liquid. I will be researching this tonight so that is all I have for you for now. My bet is that Amanda has this figured out before I do! Love ya girl!
That is all for this evening. Stay safe driving out there you Michiganders. It is getting nasty here!
Love,
Suzie

More pictures!

I finally got to going through with my promise this morning. Enjoy! I don't like to brag but.........Jen (PCTU RN)REALLY loves me!!!!
.....maybe because she plays with me all of the time!!


My big brothers are the best. They bought me this new boppy for Christmas.

Yeah, I know, I'm cute! I don't have to lift a finger here in the PCTU! ha ha!



SOOOOO beautiful!




Monday, December 15, 2008

Multi-tasking.....

I thought that I would update quickly while I'm hear at the RMH doing laundry and booking some travel.........Lindsay was moved out of the PCTU today around 4pm. The potassium was her issue and now has been assigned doses every 4 hours instead of every 6 hours. She is also eating orally like a champ and has FINALLY been written orders for feeds every 3 hours instead of every two, and is now eating 90 cc's instead of 60 cc's. So far so good and has been sleeping soundly. Before, she would eat every two hours.........it took her 1/2 an hour to eat and then an hour and a half later, she had to start all over again. Man people, she has half of a heart! She is tuckered out! Now she is on the schedule that she was on at home so it is soooooo much better we think. She has had a smiley, happy day and the nurses were sad to see her leave the PCTU. I have a feeling we will have a lot of visitors in Moderate Care!
All for now. I will post pictures when I get back tonight.
Love, Suzie

Saturday, December 13, 2008

My Boys' "Muscle Car" tree









I called this a hot wheels tree before and I stand corrected! "It is a muscle car tree mommy!"

They are so proud of their creation! Amazing what a drill and some eye hooks can do. Walla! Maybe we can sell these...haha

I think I have used this title before.....


Lindsay, Lindsay, Lindsay.......
Our plan was to leave last night around 4pm to head home so that JR could work this next week. We went in to see her before we headed home and saw that her fever that she had spiked earlier had gone down....meaning that her heart rate indicated so anyway. It went from 145 ish down to 120 ish. As soon as I said, "That heart rate looks a little better", her heart rate went down to 80, and then to 70, and with some irregular rhythms. Just so happened the our nurse, Mindi, had already gowned up for her nightly vitals on Lindsay and was right there bedside with her. They immediately called for the docs and they were also with her bedside in no time flat. All in all, she had low potassium that of course caused the irregular rhythms but not too sure why the decrease in heart rate as well. They ran a blood gas right after the incident and her potassium level was 2. This number should be between 3.5 and 5.5. She has been low before but never to reduce her heart rate like this. Apparently 2 is the magic number. So, guess where we are again.......familiar territory in the PCTU. Yes, in intensive care to monitor the princess for the weekend. I called this morning to check on her and she did have another episode around 4 am this morning so we are thankful that they decided to switch her into the unit. The doctor last night said that because he didn't want a Chinese fire drill in moderate care, he would feel more comfortable if she was in POD A instead. So, she now has her own room because of the contact precautions and we even have a view this time! The princess has a suite! Oh, and the other big news is that she rolled over yesterday! We had just missed it when we came to see her yesterday morning but was able to catch it later in the day! We are so happy for her and that she is actually able to do the normal baby things. As of my last phone call to the PCTU, Lindsay has had another episode with her potassium but because they are on a one to one basis, they were right on top of things and she is just fine. Erica, our nurse today, said that she has been the highlight of the unit and when the others have a break, they come to check in on the happy princess. It is not very often that they have babies that are so active in the unit, so they flock when it happens! She has rolled over again today and apparently we have a mover on our hands. No more leaving those bedside rails down anymore! I can't wait to see her when I go back to Ann Arbor tomorrow.

We are home tonight with the boys and are having a great night with them. We ran some errands this afternoon and then came home for dinner and tree decorating. My husband decided to decorate our other pre-lit tree with hot wheels. So, the boys helped do that and it actually looks really great. They are so proud of it! We are getting ready to watch a movie with them and Cole wants to make cinnamon rolls. So, off to go bake........

Love, Suzie

Thursday, December 11, 2008

Happy 1/2 Birthday Princess!




Yes, Lindsay is 6 months old today! She definitely had an exciting day. Patti and Trisha came to visit today and even had a photo shoot right in her crib! It was a lot of fun and were so glad that Patti was willing to drive from West Olive to do it. We are so blessed to have such great friends! We can't wait to see what special moments Patti was able capture! It was so cute, allot of the nurses and doctors would look around her curtain to try and get a glimpse of what was going on. I can't imagine that no one has done this before! Or maybe they haven't...........the princess must be the first! ha ha Lindsay was very generous with her smiles so I'm sure we will get some great photos.


Lindsay has done a little better with her feeds today.....except for tonight. She hurled up TWICE on me from her bottle feeds. grrrrrrrr. So, in goes the NG again.......and she is a happy camper again without gagging so far. We shall see how well she does tonight. All in all though, she had a great day!


I have posted a few pictures of the princess.




Enjoy once again~


Love, Suzie


PS Happy 8th Month Birthday Brooke! Miss you~




One more thing: Thank you all for all of the prayers sent Zachary's way today. He is hanging in just fine only with a few blood pressure issues which seem to be under control thus far. Please continue to have him and his family in your thoughts as today is just the beginning.


Wednesday, December 10, 2008

Everything is fine.......

Hi all! Well, after a few days of Lindsay not feeling well, she has had a great day today. Minus a few throw-ups, she is smiling and almost looks like her normal self again. She did scare us for a little bit which made Jr and I to make a decision on heading back to Ann Arbor. She had some labored breathing and her lung was still a little wet so she was getting some extra diuretics. When we arrived on Monday night, she did look very worn down. Definitely not herself. She looked almost too dry to us and her breathing seemed to be ok. All blood work has come back negative so they think that she had a small viral bug that she has seemed to truck through once again. Now, on to the feeds....they started her on continuous to see if she improves with her gagging. This hasn't really improved so tomorrow they will be removing the NG and we will be doing things orally for a little bit. Her gag reflex is just so strong that hopefully it is just as simple as her feeling that tube in the back of her throat and that triggers the gagging. We have asked about a stronger reflux med but there really isn't. So, hopefully she will keep her feeds down tomorrow and continue to get stronger. Also, she was scheduled for more of the Rituximab this week but her count is still low enough that we can wait another week or so until they check her again. This is great but does not necessarily mean that this has lowered her antibody levels. I'm sure it has a little but the transplant team is pretty confident that she will need a few more doses. They have discussed a few more medicines to try but we aren't quite to that point yet.
I worked at Cole's school on Monday. He was so excited about that and especially excited that he was able to hand out the snack. Weeeeelll, Mom forgot the snack! It was my first time working and never occurred to me that that was one of the responsibilities of a working parent. OOPS! Sorry kids. I especially felt so bad for Cole but all of the kids just went and played like it wasn't a big deal. I will make it up with a supped up snack next time! Either way, I know Cole was so happy to have me there. It was a special day.

Prayer request:
Our new friends, and fellow heart family, The Hagerott's. Their son, Zachary, will have his surgery tomorrow. Please pray that Dr. Bove is on his A-game as always and that Zachary tolerates all that has to be done to him. These cardiac kids never seize to amaze us with their strength and we are confident that Zachary is one of them. They will have updates on their carepage, I'm sure, as the day progresses tomorrow. If not, look for it in the evening. We will peek in on them as well.

All for now. I will post new pics a little later.
Love, Suzie

Sunday, December 7, 2008

Poinsettia Sale


The morning group of volunteers put stickers on 240 poinsettia plants in the comfort of the Dean home. People from all over the area came out in the winter weather Saturday to make our day a complete success!
Thank you to everyone that helped or donated. We have just a few plants left, so if you need one stop in to Ultra Tan & Travel to pick one up this week.
As you may have noticed on the blog, we are now taking orders for the "Pray for Lindsay" bracelets. It looks like, by the response so far, we'll have to order more quick.
We want to also give you all a heads up about the Red Cross Blood Drive being held in Lindsay's honor on December 23rd at the Parchment Library on Riverview Drive 10:30am -4:30pm. Our committee will be helping the Red Cross all day with the drive and you can make an appointment to donate blood by calling 269-377-7982. We will also be having a Christmas Bake Sale at the same location. Please stop by for a visit, drop off a little blood and pick up goodies for that Christmas party. Hope to see you all there.
The Lindsay Dean Heart Fund Committee

Friday, December 5, 2008

I had more visitors!!!!







Yesterday we had a great visit with Aunt Carole, Uncle Rock! haha...Robb, and Great Great Aunt Marva! As you can tell, Lindsay didn't get any attention! ha ha I think she was the highlite of their day. It was so good for them to see her smiling again. Food for the soul for sure! After Lindsay fell asleep, we stepped out for a late lunch that was incredible. So good to have conversations that don't include talking about arteries, ventricles, and function! Thanks for the great day!
Love to you all!
Suzie

Moments from a visit from my Papa and Grandma Sue




Last Sunday, my dad, step-mom, and my grandma and grandpa came to visit Lindsay. As always, she is being loved up! Here are some pictures from the afternoon. Enjoy!

Thursday, December 4, 2008

Good days!!

Well, to start things off, this past weekend we all went home for a couple of days. In those couple of days, Cole wanted to put the Christmas tree up. So, Sunday evening, here we are putting that tree up. He was so excited and when Cruz finally figured out what we were doing bringing all of these boxes up from the basement, he decided that this might be a fun thing to do too! If you scroll down the page, here is a picture of the tree assembly. Cole and Daddy looking like they know what they are doing.....and Cruz is standing behind them. Notice the piece of paper that he is holding........the directions!!! I'm glad they weren't listening to him. That tree would have be interesting though if they were. :-)
As you can see, our princess looks great! She has been playing, smiling, and going for more stroller rides! I was able to rock her to sleep yesterday. Life is good!
The only exciting thing going on here is that yesterday she had a urine sample taken to see if she tests positive still for VRE. If she doesn't, we can take off the contact precautions!! That would be great! Although, it is a catch 22 because of her immune system being down, we still have to be extra careful about germs, etc.
I am expecting visitors today. Aunt Carole, Uncle Robb, and Aunt Marva are coming to visit Lindsay. I am so excited and will share pictures with you from our visit this evening. Thanks for sticking with me and being patient for this post. I know that it has been a couple of days.
Have a great day everyone and for my fellow Michiganders, be careful on those roads!
Love to you all!
Suzie

PS. Ute, she finally fits into that cute little cherry onsie that you bought her. She looks so good in red! Miss you!











Tuesday, December 2, 2008

Zachary arrived this morning

Let's all give a warm welcome to Zachary who entered our "heart world" this morning at 7:38am.
Shout out a big "Heart Hug"!

Monday, December 1, 2008

Prayer Request......

I would like to request a prayer for our new friends, The Hagerott's. Steve and Michelle arrived at the Ronald McDonald House a few weeks ago with 4 kids (all boys!!!) in tow and the 5th (BOY!!) about to make his appearance. Michelle is currently in labor at U of M and Zachary should make is debut early this morning I would suppose. Zachary was also prenatally diagnosed with a CHD quite similar to HLHS. Please pray that Michelle's delivery goes smoothly and that Zachary doesn't have any trouble right away. They are an incredible family and we have been blessed to have met them. We will be sharing Zachary's journey with them and invite you to share it with us as well. (I have his carepage linked under "heart babies") Please spread the prayers tonight that Zachary is going to be just fine.
Thanks and love to you all!
Love, Suzie

Saturday, November 29, 2008

Eventful Day

So happy after I filled my pants!!!
Daddy taking me for my first stroller ride

Our little Turkey


I am learning to like my Bumbo seat. I can see everything now!



My 1st Thanksgiving. I can't wait to eat turkey next year!




Lindsay had a lot of activities today. Since we had the five of us here, I attempted to have family photos taken which I will keep to myself because guess what....they will be my Christmas cards!!! So, you will have to wait on those, which I will say, turned out pretty good for arranging a mock photo studio in the hallway of the hospital!! ha ha Lindsay also got to have a stroller ride today. She loved that and then was pooped, literally, afterward. I fed and changed her poopy diaper and then she conked out on me. The boys are having a great time. We went to The Seth's (Amanda's parents) hotel to take the boys swimming and they had a blast with Amanda and Jason's son, Caden. Pizza was ordered and then the boys were exhausted! Another good day for Lindsay and another day to be blessed by her.
Enjoy the photos from the days adventures. We sure are enjoying having our baby girl back!Love to you all!
Suzie

Prom Queen Lindsay will miss her Prom King.....Connor

It has been a gloomy day here in Ann Arbor. Lindsay's heart brother Connor received his wings this afternoon. He struggled so, but we find peace in that he is healed now. His heart is whole and he can play for eternity. Please pray for Eric and Michelle and the next journey in their life will be a hard one without their Prince. Please hug your children extra long tonight because we are blessed to have them everyday. Life is so precious.
I will post more photos of Lindsay later this afternoon.
Love you all!
Suzie

Friday, November 28, 2008

LAST CALL FOR POINSETTIAS

The Poinsettia Sale is about to come to a close this weekend, so if you've procrastinated in ordering, please do so by Sunday. E-mail your order to ultratravel@jasnetworks.net
Plants will be ready for pickup Dec. 6th 1:00 pm -4:00 pm at the Dean's in Parchment.
To view selections of plant colors and sizes, please visit the fund raising icon on the right.

Thanks,
The Lindsay Dean Heart Fund

Thanksgiving Update

We had the most "Thankful" Thanksgiving yesterday with a visit to Ann Arbor because there isn't anywhere I would have rather been than there. (well maybe to have been with all 5 of my grand kids)
I was able to hold and feed Lindsay while Suzie, JR, Cole, and Cruz took a much needed nap. I actually was able to give Lindsay a bottle (something I haven't been able to do since Sept.) Bill cooked the turkey and I did the fixings and we took it over to the RM House so the Dean's have actual authentic left overs.
We met up with Terry Vanderberg on our way over, to intercept a cute basket that Pam and Allison had made up. Lindsay now has her own personal "Princess Bible". Yes, Pam and Allison found this beautiful Bible that was a perfect gift for our Princess Lindsay. Suzie was ecstatic!
We were able to look in on Carlee, who is doing fantastic! Carlee's mom had an extra little turkey outfit so she shared with Lindsay. Our two "little turkeys" looked adorable yesterday.
This visit made my heart feel so warm with the way Lindsay looked and acted. We truly have her back to herself again and it was a much better drive home this week because of that.
We weren't able to look in on Connor's parents as they are bedside most of the time. Please extend prayers to them during this time. We've been there, hanging on by a thread and these heart families are truly bonded.
This Thanksgiving was so non-traditional, taking turns to go down the hall for some eats, not sitting together at a table giving thanks, but, it will remain one of the most memorable for me. Lindsay has surely shown our family what we're all thankful for.

Heart hugs to all and I hope you all had a blessed Thanksgiving, perhaps looking at it slightly different this year because of Lindsay.

Linda

Thursday, November 27, 2008

Thankful for so many things

Well, to start this off, Lindsay has had her best day yet!!! She was her normal self today and was simply delightful. My heart is just so full right now with happiness because of her perfect day. She had no fever and didn't vomit once!! WHOO HOO!! We were also told today that she is able to be listed on the transplant list as ABO too. What that means is that she would be able to accept a heart no matter the blood type. That opens so many more doors for her. There is still the fact of the antibodies, etc. but she had her first dose of Rituximab and did fantastic. They were looking for allergic reactions but she didn't have any. My daughter is my hero!!!!

This Thanksgiving I really can't even put into words what I'm thankful for because it is so much! This is probably why I'm such a blubbery mess these days because you can't help to think that this could be our only Thanksgiving with Lindsay. Of course you never want that to be true and you want to have many, many more, but then I think of all of the other heart families out there that don't have their babies to love during the holidays and I feel incredibly blessed to still have her here on earth. Every day is a gift and we try to make each day the best it can be because we cannot predict what will happen tomorrow. As we are thinking of that, please put Connor in your prayers tonight. He is linked on the right. He is not doing very well and doctors are not giving him a very good prognosis. We have become good friends with his parents, Michelle and Eric, and would like you to include them in your prayers. I can't imagine having to make "the" decision but here in "heart world", that can happen at any moment and I pray that God is guiding them through this and making it easier for them.
I am typing tonight with all of my boys SNORING!! in the background! ha ha I love having them all in one place and look forward to some wonderful family time this Thanksgiving. We have so many things to be thankful for and all of you are included! We thank you for being apart of our lives and caring so much for our family. We wouldn't have made it this far without your support. We are eternally grateful. May everyone have a blessed Thanksgiving and please be safe!
Love to you all,
Suzie

Monday, November 24, 2008

Message from home

Well, I was talked into staying at home with my boys for one more night and I will head back to Ann Arbor in the morning. I called up there a few times this afternoon to check in on the princess and she has been great today. No fevers and only spitting up a couple of her bottles. Crossing our fingers for no fever tonight. It seems that her pattern is that spikes one between 10p and 2a. So, hopefully that won't happen tonight. If she doesn't, then maybe she is over her rough patch as far as her addiction is concerned. We also got a phone call from the cardiologist in charge in Moderate Care for the week and he said that Lindsay will be getting her first dose of Rituximab tomorrow at 11 am. I am leaving early enough to be there by then so that I can ask a few questions before she is either injected or they start the drip. Not sure which one it will be. I will keep you posted. Talk to you all tomorrow~
Love, Suzie

Sunday, November 23, 2008

Lindsay,Lindsay,Lindsay

She sure is a tricky one to figure out these days. Before we left the hospital this evening, or should I say this morning, Lindsay had spiked a fever again. Doctors keep taking cultures and they don't grow anything, so no infection as of yet. They wanted to take more tonight but JR and I got a little upset because everytime that they do this, they obviously take blood from her that she needs to keep. After a long discussion with the doctors, and yes we went back to PCTU to have discussions with them as well, we have come to the conclusion that they will take blood cultures if she spikes again which we are quite convinced that she will because, even though the moderate care doctors won't admit it, SHE IS WITHDRAWING PEOPLE!!! grrrrrrr. We just think that she is not withdrawing quite so severe as other children. Low cardiac output could be another reason for fevers but her symptoms are even different from that. So, with a little Tylenol and we luke warm washcloths, she comes down nicely and is our happy little girl again. They just have to expect her to be doing this after being on constant sedation drugs for 7 weeks!! I hate to argue with some of the best doctors in the country, but we have seen her at worst and at her best and the mom is starting to come out in me..........picture me as Shirley McLain (sp?) in Terms of Endearment.....give my daughter the drugs!!! Give my daughter the drugs!!!!!
Well, it didn't go that far but I'm obviously still revved up about it since I'm posting this at 2:15 in the morning!!!! WHew!
Jr and I are leaving for Kalamazoo around 2pm tomorrow. We will get the boys for a night so that will be great to have them. Cole has a Thanksgiving program at school that we can't miss on Monday and then I'm back to Ann Arbor Monday afternoon. Jr will be home with the boys through Wednesday and then all three will be joining me in A2 for the weekend. Hoping we can keep them entertained enough to last that long. Otherwise, Jr will just go back earlier if need be. He is then back to work for a while.
Thanks for letting me vent tonight........keep praying and pray for our sanity....I think we have been here way to long and it just might be getting to us! :-)
Love,
Suzie

Saturday, November 22, 2008

Withdrawl.....











This could mean a few things in Princess Lindsay's world.......when I don't post for a few days, this is what her stalkers go through and this also means that Lindsay is going through this because of her drug addiction! Yes, she is showing signs of withdrawal by having spiratic fevers, throwing up and being very agitated. She is FINALLY off all sedation medication as of yesterday and is just being given single doses intermittently. So far so good and she had a fantastic day of rest. The only time that they gave an extra dose was tonight around 9pm. What was even better about that is that this time it didn't come with a fever. The last few have, so that is also fantastic! She is getting there and hoping to start the Rituximab early next week. She has also kept down most of her feeds and is up to 65 cc's every two hours. Will probably have to increase soon because she is really starting to get her appetite back. It is so nice to have our baby back again. She is smiling and starting to play a little. She has physical therapy 3 times a week now because she has been in bed for 7 weeks! YIKES! However, the therapist said that she is actually doing very well and isn't overly concerned that she will have a problem progressing with her motor skills. What a tough little cookie!

I have included some pictures of her from the last few days and also one of Meg, the nurse for transplantation services. This is when she was calling UNOS to list Lindsay for transplant. I know, kooky, but I had to have that picture because it was a huge deal! Andrea, and for those of you who might understand, she is listed as a 1A. This is the highest category because of her being in the hospital and on a milrinone drip. So, that increases her odds but will really matter is that we get rid of the antibodies. So, next step, Rituximab next week.
Love to each and every one of you!

Love, Suzie
PS Carlee and Connor are stable and came through surgery very well. The both had their hemi-fontan's today....Connor's was waaay unexpected at only 2 months old!!! But Dr. Bove thought about it overnight and decided that that was what Connor needed. So far so good. The next few days are critical, so please keep them in your prayers.

Wednesday, November 19, 2008

All I Want For Christmas

is a new heart please....a new heart please.....and maybe her two front teeth too! You never know!! Lindsay's new theme song until she gets her new ticker. That's right folks, the princess is officially listed on the transplant list as of tomorrow. The doctors have decided to go ahead and list her and then go ahead with the medication that she needs to reduce her antibodies. They will get all of her blood tests drawn up in the morning and get things going. She might have the medicine by the weekend. We shall see about that though. Just depends on how quickly the lab moves, etc. She did spike another fever so they still wanted to wait to see if an infection developed on any of the cultures from the last few days. So far so good, but it still doesn't explain why she will spike every now and then. But with a little Tylenol and washcloths, we seem to have it under control when she starts feeling warm. Maybe a little sign of withdrawal but she is eating fine now and again, the mystery continues.
We had dinner tonight with Jason, Amanda, and Carlee. They are here for Carlee's hemi-fontan which will be on Friday. They had to come early for an echo and the cath lab prior to surgery. So good to see familiar faces again!
We left tonight and Lindsay was actually sleeping!!!!!! YEAH! The girl is finally getting some rest and hopefully more of her normal tomorrow. Can't wait to get my hands on her again. Sweet dreams and praying that her new heart comes soon!
Love, Suzie

Tuesday, November 18, 2008

Princess Update











Hi there.....yes, it is a post from Suzie....finally! Well, we got in last night around 2am because Lindsay spiked a fever. Still not sure why but we were very concerned but relieved when the blood tests came back fine and lactate level was fine as well. We were concerned with that level and insisted that they do a blood gas. The last time that she had blood infection, the lactate level was 11 and then up to 19(I think) and it was then that she had to be re-intibated. This time it came back at only 1.2, so that is a HUGE relief. Normal level is to stay under 2.2 The troublesome part of this is that she is already on some powerful antibiotics and infection would be pretty uncommon. So, the mystery continues...........She has also been throwing up a little while after she eats. So, after a few times of that, we recommended that because of her reflux, that they switch her back to the Enfamil AR which she was on prior to all of her last operations. Seems to have worked because she hasn't thrown up since!! WHOO HOO!!

We still haven't spoken to the transplant doctor but we know that she is booked for the antibody reducing drug, rituximab, sometime this week. I have pasted a link so that all of you can read about what it does for pre-transplant patients. Basically, this form of chemo drug will reduce the antibodies in the body to help prevent rejection after the transplant. http://www.circ.ahajournals.org/cgi/content/full/116/11_suppl/I-172

After all of the commotion last night, Lindsay ate just over 90 cc's IN A BOTTLE!!! and then straight to sleep. This was also very re-assuring because she hasn't really slept well at all in the last 48 hours. Just very fidgety and acting like she was uncomfortable. Of course we had all kinds of doctors on her and we were pretty certain that she had bought herself back into the PCTU. Actually, we wouldn't have been shocked of that is what we had to do. I really think she needs that one on one with the nurses but we know that they will send her back if they think that is necessary. So, off to hold and feed her again!!!!!!! Enjoy the new photos........

Love to you!

Suzie

We Can Beat Ohio State

OK, this is sooooo cooool. We actually have a great chance at beating Ohio State with this "Gift of Life Challenge". We've all seen the request on this blog to donate the gift of life to Lindsay this Christmas. Do it before Nov. 21 for an opportunity (maybe our only) to beat Ohio State!


Wolverine vs. Buckeye Challenge for Life
The University of Michigan is taking on Ohio State University again this year, to see which school can sign up the most people to its state organ donor registry before noon on November 21. The winning school gets the trophy and bragging rights for the next year.
You can help Michigan beat Ohio State by signing up on the Michigan Organ Donor Registry.
Check out the scoreboard on the Go Blue page, and encourage your classmates, friends and family to sign up, too!
GO BLUE!

Just another short update to fill the void

The princess continued to be very fussy all through the night on Sunday and all day yesterday, so morphine was given to calm her down. It's kind of a catch 22 weaning her off the drugs and not upsetting her which can't be good on her heart. There is some withdrawl going on. They were also giving Lindsay more blood which has to stop so she doesn't build up any more anti bodies.
Suzie and JR are waiting for an update from the transplant Dr's as to when they think they can start this chemo and she will explain this to all of us when that is to start.
The Jone's arrive tonight with Carlee which will be a great sideline for the Deans. Even though they will both be preoccupied with their daughters, maybe they can have breaks together and have some "fun" if that's at all possible.
Heart Hugs,
Linda

Sunday, November 16, 2008

A visit with the Princess

Bill and I went over to Ann Arbor this afternoon to restock the Dean's fridge with some home made soup and some meals from Tina. This should have them set for the week. Thank you once again Tina!

Lindsay's move into moderate care was postponed yesterday, but she was moved there today by the time we arrived. She was unusually fussy, so they were trying to figure out what was up with that. Many things could be to blame, they just want to find out right away what it is. I enjoyed watching my daughter (you know with the honorary RN degree) point a few things out to the new nurses in charge. She really knows her daughter! Then, we witnessed how Suzie and JR talk things out about what to do. What a strong couple they are. Their plan is to both stay for the week and JR come home next Sunday to work the next week.

I did get to hold Lindsay for the first time in TWO MONTHS! I was all garbed up with plastic but enjoyed it never the less.

I know all you stalkers hate voids, so I just thought I'd write tonight just to let you know what's happening.

Heart Hugs,
Linda

Saturday, November 15, 2008

Short post.....


Hi there~ I will fill everyone in on the details a little later as to what our next step is but we have to run right now because our baby is being moved to moderate care!!!!!!!!!! Can you believe it? It has been 7 LONG weeks since we have been there!!! It will be a little emotional to leave today I'm sure, with all of the wonderful doctors and nurses. But, we will be back. I will get to more of the update after we get her moved. We will have a computer right in her room now!! WHOO HOO!! Enjoy the picture of her playing with a rattle for the first time :-) Talk soon~

Suzie


PS All of you deer hunters today.....BE CAREFUL!!!!

Friday, November 14, 2008

FUNDRAISING OFF AND RUNNING

For those of you that need your daily hit on Lindsay news.... She had a new pic line put in yesterday afternoon and the Dr's have decided that they will re-evaluate her today. It seems her stats are so good, that they're going to make a decision what direction to head at this point. The Princess might be ready for the chemo to begin to prep her for a transplant. After their all day pow wow, we'll get an update what's in store for the Princess.

Fundraising is off to a fantastic start. Beginning with the bake sale of all bake sales, the committee is selling poinsettias like crazy which includes churches and banks that will be displaying Lindsay Poinsettias this year. Hundreds have already been ordered!

If any of you want to participate by getting your church or business involved, please let us know at ultratravel@jasnetworks.net Orders must be in by Dec. 1st with Delivery Dec. 6th.

Please join us on the link to the other blog (Sharing the Love) to keep informed on the fundraising efforts. You won't believe what we're up to next.

Thanks,

The Lindsay Dean Heart Fund Committee


Wednesday, November 12, 2008

NEW FUNDRAISING ADDITION

Please visit the new addition to Lindsay's Blog by clicking the "Sharing The Love" icon on the right side of this blog.
This will take you to a separate section with updates of all the fantastic fundraising events going on to help Lindsay's family.
Check back often because we have some GREAT events in the planning!
As you might well imagine after 5 weeks in Ann Arbor in intensive care, 5 open heart surgeries, and a heart transplant in the future, it's our time to help!
The committee for the Lindsay Dean Heart Fund is open to any and all of you that would like to help this family in their time of need.
We also welcome any ideas you might have as a fundraising event.

Tuesday, November 11, 2008

Happy Birthday!

Happy 5 month Birthday to the Princess!

We love you so much baby girl. Keep getting stronger everyday!

Love,
Mommy, Daddy, Cole, and Cruz

*Happy 7 month birthday to Brooke! We miss you..........

Miracles DO happen!!!










I have been following this little girl, Mia, via Annabelle's blog that has been waiting for a new heart now for over 90 days...........well, here is where the miracle comes into play. She got her new heart today!!!!!! I have added her link to Lindsay's so that you can follow her progress. What an amazing day! I was just telling JR that I was going straight to bed tonight after seeing Lindsay, he said...Yeah right!, but wanted to check the blog first to see if anyone else left a message. Got done with that and then went to Annabelle's to see what Rebecca has been up to and then my usual, to then check on Mia. To my surprise, I read the exciting news. It actually happens and is so nice to read about a success story when we are headed in that same direction at some point. Mia has a long road ahead of her so please pray that her body accepts this new heart and please pray for the family that lost their baby but that they find peace in the fact that they gave new life to another precious family. God is good and certainly works miracles!

Now, to Miss Lindsay. She has been a mystery but tonight I think we cracked the code. She has been a little cranky and acting very fidgety lately. White blood cell count was up a little but will keep an eye on that and another check will be yet this morning around 4 am. So, guess what.....she is in pain when she pees....grrrrrrr. Placing bets now, again, on another UTI!! Can you believe this?!! We won't know for sure for probably a few days because the culture has to actually grow something before treating it. I asked them before taking the catheter out if they could start her on something just in case but was told because of her VRE, they really can't do that unless diagnosed. So, we wait. SO FRUSTRATING!! Please pray that she recovers from this, whatever it is. No serious fever thus far and her rate is very good. Come on baby girl!!

On the brighter side of the last few days, Lindsay has been smiling allot and we were able to get long hold times. Nothing like looking right into her beautiful blue eyes and having her smile at you. Yes, I'm sappy, I got tears in my eyes....;-)

Sweet Dreams......
Suzie









Friday, November 7, 2008

NO VENT!!!







Lindsay is vent free! She is doing great, looks great, and weening off her meds nicely. She is still very sleepy and we still haven't held her yet. She gets flustered easily so we just let her be. She is up to 19 cc's per hour on feeds. She got her ART line out, which I might have already mentioned, and she also got her catheter out as well. Now back to changing diapers! The small things that make us parents happy! Crazy as it sounds, she has been fed now for two days and still hasn't pooped. So, guess what? Please pray for poop. We don't want the princess to get constipated.

My boys arrived last night and it felt good to fall asleep with them last night at a decent time! So, that explains why no post last night......We are enjoying the boys at a hotel tonight with a water park. They are having a blast and we will go back to A2 tomorrow afternoon. The RMH is fine but the kids end up getting bored and are too high strung to be quiet when they need to be. The walls in that place are paper thin and for some reason, especially Cruz, they don't understand that concept. I just called to check in on Lindsay and she just got her bath and resting very well. Hopefully we can cuddle tomorrow.

Blessings to all of you!
Suzie