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Arrangements for our Angel Princess

Lindsay Dean

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DEAN, Lindsay Raye
Of Parchment

Lindsay was born June 11, 2008 at CS Mott Children's Hospital at the University
of Michigan with a congenital heart defect known as Hypoplastic Left Heart Syndrome. Because her heart was too weak for complete surgical repair, Lindsay was placed on the heart transplant list in November 2008. After a long fighting wait,
her angel heart finally arrived just in time to her in June 2009. Lindsay was finally able to make her way home in
July of 2009 to begin her
new life with her family. 3 year old Lindsay Raye Dean, daughter of Everett (JR) and Suzanne (Lumbard) Dean of Parchment, received her angel wings Friday evening,
June 17, 2011 at Bronson Methodist Hospital after having a seizure which led to cardiac failure.

Lindsay is survived by her
two brothers, Cole and Cruz Dean; grandparents, Mary Dean (Parchment), William and Linda Smith, Donald
and Susan Lumbard (all of Kalamazoo); great grandparents, Clarence and Delores Lumbard (Plainwell); aunts and uncles, Daniel Lumbard (Pensacola, FL), Ken and Suzan Dean (Parchment), Doug and Deb Farrer (Kalamazoo), Robb and Carole Simpson (Wayland), Marva Simpson (Kalamazoo), Daniel Simpson (Clarendon Hills, IL), Jeff
and Carol Simpson (Lebanon, NJ), Jeannie Schoonbeck (Portage), John and Pam Lindsay (Muscatine, IA), Rick and Debra Lindsay (San Diego, CA), Wade and Retta Town (Kalamazoo), and Ed and Cindy Dean (Scotts); cousins, Braeden and Camden Lumbard (Pensacola, FL), Zachary Dean (Parchment) and Samantha Dean (Kalamazoo).

Preceded in death by her grandfather, Everett Dean, Sr.; great grandparents, Carrol and Margaret Lindsay, George and Ruth Dean, and Albert and Beatrice Schoonbeck; and uncle, Charles Simpson.

In lieu of flowers, memorials can be made to the Lindsay Dean Heart Fund at any First Community Federal Credit Union or by paypal on Lindsay's blog at www.lindsays
heart.blogspot.com to help with funeral expenses and
her pay it forward ministry
to other heart babies at CS Mott Children's Hospital, Love From Lindsay Baskets (www.
lovefromlindsaybaskets.blogspot.com). A Celebration of Life Service, given by Pastor Pam Vanderberg, will be held on Friday, June 24, 2011 at 11:00 AM in the Valley Family Community Center, 995 Romence Rd. in Portage. The family will receive friends at the Langeland Family Funeral Home, Westside Chapel, 3926 S. 9th St. on Thursday, June 23rd from 5-8 PM. Please visit www.langelands.com for online obituary, directions, register book and condolences. (269) 343-1508

Heaven just got sweeter............

With the heaviest of hearts, we are saddened to say that Our Gift from God has passed suddenly and now in the safe arms of Jesus. Friday June, 17th will now be Lindsay's Jesus Day. Funeral arrangements will be announced very soon.
Please pray for strength for our family during this time.
Heart blessings always~
Suzie

Summary of our week at hotel Mott.........

Starting where I left off..........so......after her ordeal on Monday from getting her line placed, Tuesday was spent just recovering. It was a mellow day of checking her levels, keeping her comfortable, and lots of rest. Thank goodness for an uneventful day! On Wednesday morning I was awaken by a phone call from one of the fellows working in the unit that week. She said the Dr. G wanted to take her down to the cath lab asap. What!? (good thing I had been sleeping in the ICU waiting room!) Apparently he had heard a gallop ( third heart beat) on Tuesday but just attributed it to the craziness from Monday. However, it was worse on Wednesday when he listened to her. His thoughts were that the extra beat was due to rejection. Checking pressures and getting biopsies was the only way to confirm it. So, off to the cath lab she went. Was a little nervous since we knew what had happened on Monday but then again, she was hydrated and starting to feel better. In fear of rejection, Dr. G started her on a whopper of a dose of steroids just in case the biopsies told us bad news. Biopsies came back later in the day, not rejection! great! But now what!? Not to mention that the pressures on the left side of her heart were now 20. They should be 10! Great! I am thinking at this point, " we came in here for diarrhea problems and now we have heart problems!" ugh! In the meantime, we are still meeting with GI and everything sample that has been sent in still keeps coming back negative. Because of all the stuff going on with sedation, etc., she hasn't been eating hense the diarrhea has gone away and tummy looks better. This is also what the GI people kept saying as they would examine here in the ICU. Well, duh! It's going to look better and decrease when your not eating........I was really about to smack the next person who came to me with that as sounding like it was great news! Grrrrr.........at this point, it was going to be extremely difficult to figure out what was going on. We are pretty confident that the flagyl is working! Keep your fingers crossed! Moving on.........Wednesday I headed home to be with the boys and for a photo shoot that I had scheduled a while ago. I also had to be home for my best friends wedding on Saturday. On Thursday after work, JR headed over to A2 to be with the princess for the weekend. While I was away, She developed elevated sugar levels. This was because of that whopper dose of steroids. If it's not one thing, it's another! :) while still monitoring that, she was still on tpn and lipids to control her nutrition. It was decided to give her a low sugar/low lactose diet to take it easy on her colon when she starts to eat. So far so good and it was an uneventful weekend for daddy! I headed back over on Sunday afternoon so that JR could go back home to work. Sunday was our 12th wedding anniversary. Saw my groom for about 1 hour. Romantic huh? Lol oh well. There will be more!
Now we are to Monday.(yesterday) Tpn and lipids were taken off because she was eating fairly well and almost back to her baseline in here weight!!! Yay!! Getting used to this whole low sugar/low lactose thing, but we are getting it. Uneventful.....so I thought. Lindsay now has an elevated heart rate and we can't figure out why. We upped her atenolol but it hasn't seemed to be making any difference as of yet. Not sure if they will really do anything about it but we I'll figure that out in rounds tomorrow (Wednesday). Today, she still has the higher heart rate and now we are battling with nutritionists on how many calories she should be getting. They say a minimum of 1480 per day. What?!! I don't even think that I eat that much! I know it's possible but......I'm an adult!! Not only that, but our problem is no longer her weight! She is back at her baseline and keeps gaining .1 kilos everyday! She can't keep doing that. I don't want to end up with an obese child! Ugh! Ever get the feeling that you think you are being listened to but you're not? Lol well, long story short, I think I'm winning that battle. Cardiologists are really not worried about it, so I won't be. :) the question now is the heart rate. Lindsay had some funky electrical things happen on her monitor the other day that Dr. G wants Dr. Bradley to look at since he is the expert in that field to see if he thinks we have an issue. Didn't hear anything today so I am assuming that they will have an answer tomorrow by the time they round on her. If it is a problem, there is a med that will correct the electrical problem and lower her heart rate. Ok, great. Let's get on with it then! :) antsy you ask? Pretty much! You see, Cruz graduated preschool on Thursday and this mom will not be missing it!! Thanks to the fabulous Devon, mommy doesn't have to worry! She will be staying with Lindsay tomorrow night and Thursday morning so that I can go. Love you girl! Who better to stay with her than a physician from U of M!! :) She knows people......lol
Tonight I had a visit from GI. Once every couple of weeks, they meet with the pathologist (which is one of the very best in the country......so they tell me) and discuss as a group all of the latest scopes and biopsies over that time period. Of course our princess was one of the topics of discussion. He discussed in detail the areas of concern. She did have some areas in her small bowel that indicated that she does in fact have celiac disease. However, her blood tests indicate otherwise. Hmmmmm well, because those two findings are different, we can try a few things to see if they work. Once Lindsay has completed her cycle of flagyl, and the diarrhea stays away, then she should be fine eating whatever she wants. If the diarrhea returns after the flagyl is completed, then we take in a sample to make sure that she doesn't have anything else first. If that comes back negative, then we are to start a gluten free diet for at least two months to see if that works. We should really know if it does within two weeks. I asked that question about how soon will it work because if she is till having diarrhea , I don't want to end up in the same boat that we are in now. so, only time will tell on that one. She will take her final dose of flgyl on Friday.
Hopefully this got you caught up. Crappy to not really have a definite diagnosis but at least she is better and the end is near! I can feel it! :) the only obstacle after we get the ok to go home is getting her line out. She will have to have it out in the cath lab and sometimes they have to coil it to prevent bleeding. Mainly because of where it is placed.....in her liver.
Please pray for a successful rounding tomorrow and that everyone has an answer to our problems! Lol I will update as soon as I know the plan! Lindsay prayer warriors rock!

Poop.......

Hi everyone! It's been a little bit but have been crazy busy trying to keep up with our little princess lately. She is still having belly issues which started back in December before our family left for Florida to celebrate Christmas. Anyway, this passed week and a half has been eventful. Lindsay was admitted a week and a half ago to get some tests rolling on her belly. The first order of business was to get a PET scan to see if there were any areas that lit up that basically indicated that she had PTLD (post transplant lymphoproliferative disorder). PTLD is a type of cancer that is sometimes found in people fter transplant. Finally on Friday afternoon, they were able to get her in. So incredibly happy to say that that test was negative for PTLD! Yes! However, this means that we don't have an answer yet. Next step is to do an endoscopy and colonoscopy. Biopsies were taken and all looked normal to the naked eye. Now, we wait.............
Lindsay was discharged on Tuesday and was so happy to finally get to eat and drink after having to be on a strict diet to clean out her system and then npo the morning and part of the afternoon of the procedure. things were back to normal on Wednesday and then on Thursday, her diarrhea was worse than ever! I contacted Meg and decided to watch her overnight and decide in the morning on what to do. I called her first thing to let her know that I didn't feel good about how she was doing and then made an appointment with the pediatrician to get a second pair of eyes. Pediatrician sent her for the predictable blood work and sure enough, she was slightly dehydrated. Off to Ann Arbor we go! Ugh! And on a Friday! Double ugh!
So, I finished what errands we needed to run and headed east. Went through the ER and finally was in a room by 11pm. Of course the nurses knew we were on our way and had a private room hook up all set for us :) Lindsay received some fluids in the ER and more overnight to try and solve our problem. On Saturday, she was doing pretty well with her drinking and just ok with her eating. She slept a lot on Saturday but we were thinking that she had also caught some type of virus and was just trying to recover. Who doesn't sleep when they are sick? Well........then comes Sunday. Besides the joy of having my threes boys come visit me on Mother's Day, the day was pretty grim. Lindsay was even more lathqrgic and had absolutely no energy what so ever! She didn't even have enough strength to hold her head up let alone sit up on her own! We lasted until about 2pm or so and I had had enough. She was now throwing up along with the diarrhea and dwindling away before our eyes. I got the attention of a resident that was on the floor and told her that I was done! She was no longer floor status material and she needed more attention! All of the color was disappearing from her face and her belly just kept getting more distended. They called for the ICU fellow to come over and look and she certainly didn't waste any time what so ever moving her to the Pod! Now we're talking! As Kyle so eloquently put it, mama bear roared! Lol when we got her over to the unit, we quickly inserted a ng tube and suctioned out her stomach to try and release the air and whatever else that was causing the distention. So far so good and her stomach went from 61 centimeters down to 54 or so. Progress. In order to get her the fluids that she needed, they really needed to get more access so they started another IV in her foot. That was fun. Not! Her access is horrible and then add being dehydrwted on top of it doesn't help. Lindsay then received boluses of albumin. Took some blood gases to find out that her levels were all out of wack. Her electrolytes were horrible and she was definitely in trouble! Of course, her potassium was one of those items that was low along with others. Her white blood count was fine. Her crit was low so she received some blood and her bi carb of course was low as well. After all of that, she was I,proving but she was still 1.5 liters down in fluid. Not good. So, the decision was made today that she really needed a PICC line placed in order to get the volume that she really needed to get better. While waiting for the go ahead to head to the cath lab for the line, a bunch of stool samples were sent down to the lab along with continuous monitoring of her stats. Again she was npo and ticked to say the least that she couldn't eat or drink before the procedure. Ugh! GI also cam by to discuss our next steps......I think. Mainly came to tell me that everything that they tested so far and biopsies has come back negative. They are treating her for Small Intestinal Bacterial Overgrowth and put her on flagil for that. Not knowing that that is the problem, being on the antibiotic is not going to hurt her but will kill any of the bacteria that they think is growing in her small intestine. W shall see whwt the outcome of that one is! Grrrrrrrr. We she is ready to eat, we are going to start her on a sugar free diet to keep things easy on the colon and go from there. Hoping to have a brainstorming meeting soon to discuss the plan of attack because we still didn't get one. Contemplating a second opinion!!!
The day just got harder after Lindsay line was placed. She had to get a transsapatic PICC line becau her other areas are just not feasable. After that was done and because she was so incredibly dehydrated, she started having trouble. Her cardiac output was starting to decline and all hell broke loose. She needed some epi and dopamine along with more boluses of albumin and whatever else to make her come back! Ugh! She didn't code, but was certainly close to it. Again, we have some wonderful people that care for the princess and we are grateful for them yet once again. Dr. G was there very step of the way and fighting along with us for belly problem solving. I don't think we are leaving the pod until we have it figured out.;) oh Lindsay....how you like to give mommy and daddy heart attacks! Sleep well princess! praying for forward progress tomorrow. Prayer warriors are appreciated!