Wednesday, May 18, 2011

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!

18 comments:

Kyle Keiser said...

Oh my gosh.......got that MD certificate on the wall? You know way more than any lay person ever should but, your knowledge is power. Stay strong smiling girl! Give Lindsay hugs and tell her Kyle "yikes" her and wants her eating Spaghettios with a smile soon.

Love you.....
kyle

Anonymous said...

Ugh.....Well, you know how I feel about Cincinnati Childrens right Suzie? THey saved my baby and I will be forever grateful to them. Well, they also happen to be #1 in pediatric gastroenterology. Just something to think about.........Hang in there and keep us all posted. Love to you all!!

Lisa G.

Evie's Story said...

You must be exhausted...physically....emotionally...!!
Praying with you for answers to come QUICKLY and for unity among doctors for a course of action that will get her healed and HOME.

You're amazing to be juggling all of this with such grace and strength! Hugs to Miss Lindsay!

Anonymous said...

Digestion Plus
* Provides Probiotics, Prebiotics an enzymes (discussed in the power pack section)
* Supports extensive digestion of carbohydrates, fats, proteins, fiber and lactose.
* Probiotics: small organisms or friendly bacteria that help maintain the natural balance of organisms or flora in your intestines. This assists with digestion and absorption, you will be able to break down food to the most elements. They clean the intestinal tract. We can’t always eat perfect, and you get a layer of “crud” in your intestinal walls and unless you are taking something like this, that “crud” attaches itself to the wall and you are going to feel fatigues, tired, and sick.
* The probiotics will dislodge accumulated decay and will wash it out of our system.
* They also increase the availability of vitamins and nutrients, especially vitamin B, vitamin k, lactase, fatty acids and calcium.
* They slow the growth of disease causing bacteria. If you want to build up your immune sstem, you will want to take probiotics.
* Some things it can help with: gas, bloating, indigestion, stomach problems, diarrhea, constipation, immune disorders, IBS, colon problems, and allergie. VERY IMPORTANT IN WEIGHT LOSS.
* Prebiotics: Prebiotics are nondigestible nutrients that are used as an energy source by certain beneficial bacteria that naturally live in your intestines.
* They have been shown to improve digestion (including enhancing mineral absorption[9]) and the effectiveness and intrinsic strength of the immune system.
* Studies have demonstrated positive effects on calcium and other mineral absorption, immune system effectiveness, bowel pH, reduction of colorectal cancer risk, inflammatory bowel disorders (Crohn's Disease and Ulcerative Colitis) Hypertension (high blood pressure) [and intestinal regularity. Recent human trials have reinforced the role of Prebiotics in preventing and possibly stopping early stage colon cancer.

Anonymous said...

Lots of love and hugs coming your way. If anyone can figure this mess out, you can. Your patience surely outweighs mine! Thinking of your and yours. Hugs, kisses and prayers that soon an answer will come your way! Thanks so much for the update, God bless. Love you/AuntC&UncleR

Anonymous said...

I've been reading and praying for your princess for awhile now and thought I'd finally comment. My son had issues with going to the bathroom. The Drs had NO IDEA and after months were referring us to Childrens in Wisconsin to meet with an expert Dr there. I decided to do some of my own research and stumbled across a blog about a little girl with the same issues. Her parents had started her on Florastor for kids and it was working. Well if it worked for her than we HAD to try it. Anything at this point! It DID end up working and the Drs were amazed. Our trip to Wisconsin was never set up and our son hasn't had a problem since. I kept him on it for 9 months and he's been off for over a year :) Just thought I'd share with you. Hope you find your answers.

Anonymous said...

Well, let me try this again! :) I posted a long message and somehow I deleted it instead of posting. Oops. I first learned about Lindsay on Paul Cardell's blog and have been following your blog since that time. Our daughter, Leah, was born with Tetrology of Fallot and Pulmonary Atresia and is scheduled for a cardiac cath June 14th. It never gets easier, does it? Leah too had GI issues and skin issues (ezcema)- especially right after her surgery. It wrecks havoc on the poor immune system. We scoped every orifice of her poor little body and found nothing. Thankful, yes! Frustrated? Yes!
I started using Arbonne products on her skin (cleared up eczema immediately) and started giving her one of the probiotics daily (in a shake.) Since that time, she has not once complained of a tummyache- the tummyache she complained of EVERY DAY before that. I hesitated to share this with you because I didn't want you think I was....crazy.....:) and trying to "sell" you something..... I even closed the computer, but felt "tugged" to come back to it and share it with you. what if it helps? I will continue to pray for your precious baby girl. May God lay his hands down on her and heal her, today! May He give you comfort during this time. I believe God brought Arbonne International into my life so that the products could help Leah, but also so that the business opportunity could help us recover from the path of medical bills and all that comes with that. I would be happy to speak with you if you'd like more information about the probiotic/prebiotic/digestive enzyme products. You will be in my prayers.
Heart mom to Leah
Lisa
ml@mlmoen.com

Katie said...

Oh Suzie! What a rough couple of weeks you've had and the princess??? She's such a little toughie but quite mysterious :) Hoping you are home by Thursday for the graduation and the cath procedure goes smoothly for her. If it's not one thing, it's always another isn't it!?!

Thinking of you...need lessons on balancing hospital/family life again. Maddie's Fontan is Tuesday, like you, we live far away from our hospital so it isn't easy trying to be mom to 3 kids, 3 hours away from each other. Thank goodness for family.

Glad you're almost out of there. Prayers for Lindsay!

Mommato2miracles said...

Hello there! It seems as though lots of people have already commented in this direction, but I just wanted to add my two sense about probiotics. My son came home from the NICU with diarrhea, was eventually diagnosed with C. diff, multiple hospitalizations in his first year of life. There were cultures of stool that came back negative for C. diff but he continued to have the diarrhea. OUr GI doctor diagnosed him with "Chronic diarrhea of infancy and toddlerhood", the most annoying diagnosis ever! We did four colonoscopies/endoscopies. They couldn't figure out this bloody diarrhea situation. I switched GI doctors, and we did an elimination diet, which DIDN"T control the diarrhea. We then started him on a probiotic called Culturelle, this helped the diarrhea a little but didn't resolve it. We then added Fluorastor and it has made a HUGE difference. He is now four and still stools about four to six times a day. But he is growing and gaining weight.
I would definitely recommend probiotics for Lyndsay:-)
Sending lots of prayers your way

The mom of 4 monkeys! said...

Just checking in to see how the princess is doing! Hope no news is good news! Thinking and praying...

The Max Family said...

So sorry for your loss Little lindsey is dancing i heaven and her little body is wholewith out all the many med complications, I am praying and sending hugs from co as you cope with her great loss :(

Megan Bouwman said...

My heart weighs heavy tonight as I pray for strength and peace for your family. I never had the honor of meeting lindsey but her story has always touched my heart. My prayers go out to your family, friends and all the hard working medical teams that always were looking out for your angel.

Anonymous said...

Dean family- I am so sorry for your loss last night... I have prayed for you so many times and will continue to keep you in my thoughts and prayers!

Anne said...

Dean family, I have been following your blog since I "met" Lindsay and Tommy through Ethan. I had assumed no news meant you were all doing better, but I just heard of your sad news through Colleen.

My prayers go to your family and to all the people who will grieve this loss. I am so sorry for you.

MetroParks said...

I have been following the princess and all of the moments you treasured so well from the beginning. So saddened by the loss. May Heavenly Father bless your little family.

Melinda said...

I heard the news about your sweet Princess ... I am so sorry. So very sorry.

Wendy C said...

I am so sorry. I just learned about Lindsay from Colleen. How my heart breaks for your loss and my prayers are going up to our Father for your strength and comfort.

In hope,
Wendy

Tara S. said...

I just seen your news story. Thank you for sharing the story of your beautiful angel with us. I hope the love we send out will help with the healing process. your story has touched me in a way that no story has in a long time.