Fashion show on hold........

Had a fight with the wall, and the wall won! Poor thing tripped and hit the corner of the wall right with her noggin! My poor husband was right there but couldn't catch her fast enough. It was like it happened in slow motion but neither one of us could get there in time to prevent the inevitable. Ugh! She was a champ letting me hold an ice pack on it last night. We kept her awake in fear that she had a concussion. I gave her some Tylenol because I KNOW that she had to have had a headache after this! Good news is that the swelling is gone but the ugliness of it will last a little while. Oh man, and is it ugly! Poor baby!!!!!!! ;( Keeping an eye on the bruising. Post transplant kids sometimes have trouble with bruising. I will call if it doesn't go away ;)

Fashion show!

While I was in SC, of course I didn't come home empty handed! This is the fashion show request from Rebecca with more to come!

An update on the princess! She has been doing great! Her appetite is fantastic and meds are starting to level out. We had to decrease her tacro dose once again as her level was 17 last week. Now she is all the way down to 0.5 ml's twice per day! That is hardly anything! Simply amazing that all of a sudden her body is saying that she doesn't really need the drug! She was blessed with a perfect match and we just know her donor angel is always watching over her. We are going to get another level tomorrow and will know Monday if we need to make yet another adjustment.

She has an appointment next week with a fantastic GI here in Kalamazoo. Anxious to run things by them and see if we have nailed down her belly problem. We have taken her completely off of dairy (minus cheese on the pizza, etc.) and her belly and stools have been soooo much better! Praying that it is something as simple as an allergy all of a sudden. We shall see what he says and move forward. Trial and error, I think we have the basis down.

Again, more to come with the fashion show. Stay tuned! I had so much fun shopping for her! Especially with all the smocking that is available in the south! YES!!!!!!

Yes.....we are home! (last week...)

Delayed post but yes, we are home! We FINALLY were discharged on Wednesday afternoon! Final diagnosis was tacro toxicity. YIKES! We certainly do not want that to happen again! Not good. God has sure allowed Lindsay to jump her hurdles and for that, we are thankful.

I had Lindsay Baskets ready to go before we needed to head to the hospital but didn't have time to load them up. So, when JR came back to the hospital to pick up Lindsay and myself, he was great enough to bring the baskets! So, I was able to finish assembling them right in her hospital room and then wheel them down to POD A for the nurses to deliver. Delivering them to the unit never gets old. While our stay at Mott, we heard at least four heart warming stories about the baskets and the families and it warms my heart that they are loved so much! Those stories just give more even more motivation to keep on giving back!

As you can see, Lindsay got a little visitor while we were there. Ahhhhh, Tommy and Lindsay Schomaker..........we may just see that on paper someday ;-) He says that we will! lol Thank you for the visit Colleen and Tom!
Here is Lindsay playing "doctor". She is getting pretty good at listening. Maybe someday she will!

Oh.....thank goodness for the Christmas gift! ;-) What could be better passing the time at the hospital? Comfy pillow, watching Ni Hao Ki Lan, and eating cheese popcorn!

I had a lot of anxiety while hospitalized. Shocker, I know! Not only did we stay longer than expected, but we got discharged the afternoon before I was to get on a plane from Detroit to South Carolina!

I was so afraid that they weren't going to let us go on Wednesday. Thank goodness that it worked out because spending time with these lovely ladies was incredible and just what this momma needed! Time away in Charleston is always fun and we sure did make the most of it! We laughed, cried, ate....allot!, and certainly relaxed. We all deserved it and I'm thankful that everything worked out

as we planned. Thank you soooo much to Rebecca and Danielle!

Enjoy some of the photos that I captured while sightseeing in one of my very favorite cities!

Long Days

Lindsay has been doing fantastic! She looks so much better and is back to her normal self. Thank you once again to the good Lord above! Yes friends, you guessed it. We are still in the hospital! Ugh! Why, you say? Good question but in typical Lindsay fashion, she shows the doctors things on her own time. We were told that maybe on Sunday we would get discharged. Well, over the weekend, Lindsay developed high blood pressure all of a sudden. Ugh! We have gone up on her Enalapril and have been monitoring it ever since. These last few days have been VERY boring waiting for the medicine to work to the doctors liking and waiting to see if her blood pressure has stabilized to what they want her to be. She has had a very successful day today with regards to that and depending on her tacro level and blood pressure reading in the morning, we should be able to go home! Jr is bringing the boys over tomorrow to pick us up so crossing my fingers that they can make the road trip! Jr went home today to be with the boys since we had to break our promise of coming home last night. We didn't want to break another one today. So, he was there to get Cole off the bus and when my Dad brought Cruz home. You talk about two happy little boys! I can't wait to see them!
Over the weekend the doctors also requested to send stool samples and urine cultures down to the lab in hopes to figure out what is going on with her belly. They had found some yeast in her stool so they are further investigating her urine to see if there is something in there that should be treated. If so, then she would just get an antibiotic and things should get better. If not, then GI will be in our very near future because even though we have the other things figured out, her belly is still distended and lots of stool still being held in there for some reason. Maybe just a Myralax fix we hope, but you know the princess, it won't be that easy.:-)
Hugs and love to you all. The prayers keep coming and are always appreciated more than you know!
Heart Blessings~
Suzie

In the right direction......

The last few days have been very productive and she is looking really, really great! Most all of swelling is gone and she has been eating! That is so exciting for us because Lindsay hasn't eaten very well the last almost three months. Just nibbling here and there. Yesterday she ate a whole piece of pizza along with Mac and cheese for lunch. Her snacks have been Doritos and cheerios. I think we have finally kicked the saltines kick that she was on. But, the poor girl didn't feel well and that is what tasted good to her. Can't blame her for that! Today she was surprised with a huge bowl of popcorn by one of the cna's. She was in her glory and Loise was thrilled that she loved her gift so much! Awesome! Lindsay had a bath today too. It had been almost a week. She probably feel like a whole new woman! Lol spaghettios and a little jello was on the menu for lunch today. Can you tell that I am thrilled that she is eating!?
On the medical side of things, she is still on her diuretics and today was her last day of her antibiotic for her pneumonia. She started myralax yesterday to try and release all the extra stool that is in her bowels. So far, nothing really exciting in her diapers that is out of the norm. I think tomorrow we might be taking a more aggressive approach. The fear in doing that is drying her out too much. We just have to be careful of dehydrating her again. She also has a lot of air in the bowel too. Not too clear how that is happening but hopefully once we get her emptied out a bit, that will help. We are getting there and we are very happy that she is here at U of M. They re so careful with her and they all know that she can be tipped in the wrong direction very easily so they are being cautious with be aggressive. Her tacro level this morning was down from 10 to 8 this morning. So, still very good in that department. Another blood draw in the morning to see if her dosage is what we need her on for when we leave. There is a very slim chance we could go home tomorrow, but only time will tell and what her reaction will be to another dose of myralax. Thank you again for your prayers. The Lindsay Dean prayer warriors are the best!
Heart Blessings ~
Suzie

We are on the FLOOR!!!

Things are really happening today! She was able to get her central line out of her groin, all IV's were pulled, and all meds are oral! Yes! Her swelling is much better due to her lasix and aldactone diuretics and she has eaten more today than she had in a total of three days at home! Ahhhhhhhh.........We are now on the floor and....wait for it.......not in a private room? "WHAT?" you say? No more precautions for her! She is so far post transplant and has no crazy flying bugs so we get a room ate. Different I will say but we got paired in a room with a beautiful family with a daughter, Addison who is Lindsay's same age, who is just cute as can be! We are so, so happy!
Now, tomorrow they will draw more labs to again check her taco level. It was already down to 23 today from 53 yesterday! Awesome! You can totally tell that she is coming back to her normal. Such a great sight my friends! I will address the plan to figure out her gut issues but I have a feeling that all of this was started by a virus ( when she got the flu before Christmas) which led to her not eating as well, which led to dehydration, which led to her body not taking it anymore, which led to her tacro going berserk because she was dehydrated. We were VERY lucky that we didn't encounter more severe results because of that critically high level! She really should have been seizing with that level! Yikes! And so not cool! But, yet gain, our princess rules the roost and likes us too much to leave us. God is not ready to take her away. She is teaching us just too much. I hate that she is my teacher, but that is what I believe she is here to do. I am a much better person because of her. Thanking God for her everyday and that HE chose us as her parents! Here's to a successful tomorrow so we can blow this Popsicle stand!

A day of unknowns......

Today started with taking Lindsay down to the cath lab to take a closer look at her heart, get a few biopsies, and try and get lines in for meds later if needed. Got an update from Meg about 2 hours later that they were able to get access through her groin for the biopsy (whew) and had gotten 8 tissue samples to check for rejection. The next update about 1/2 hour later was that they had to give Lindsay some Dopamine to help her blood pressure because it had really taken a dive during the procedure. Freaking out momentarily that we had a bigger problem on our hands, she then explained that they had to put her under general anesthesia, put her on the ventilator hence the reason for the lower pressure. She was reacting to the anesthetic and needed some assistance for the rest of the procedure. After all was done and getting a line for meds was unsuccessful ( not surprising. Her access really stinks!) , they brought her up vented but before we could even see her, the decision was to extubate her because she apparently was throwing a fit! Lol Wonder why? We finally got to see her and really, we thought she looked pretty good. We knew she was doing ok because she was asking for crackers and juice:-) Her eyes really lit up when she ate her cherry Popsicle! The rest of the afternoon was spent taking care of her and making sure she stayed comfortable. The hard part of that was watching phlebotomy try multiple times trying to get another IV. They were in her room for almost an hour and even with ultrasound, they couldn't get it accomplished. Ugh! Poor baby by then was ticked off! That is putting things mildly! A little versed and got a well deserved nap. Mommy and Daddy then got to leave to get some dinner.
The highlight of the day was Dr. G stopping us before we went to grab supper to tell us that her biopsies came back with absolutely NO REJECTION!!! Thank you to the great Lord above! So, what does this mean now you ask? Well, we also found out that her Tacro level was 53! Um, that's not good! Her level should be anywhere from 5-20 and Lindsay's is normally around 13. So, the plan is the wait it out a few days to allow for her tacro level to decrease and see what her heart looks like then. The elevated level could be the attributing factor to all of this trouble. That would be great if that fixes all of these unknowns with her heart. If she then decides to release all of this stored poop, then
we have our answer. If not, then we re-evaluate and get the GI consult that I wanted a long time ago! :-) So, the plan is really to wait it out
and see what she likes and dislikes. She will be getting her small doses of lasix still along with her meds but minus her tacro dose of course.
:-) We left her in the care of nurse Amy tonight sleeping. Let's hope she gets a good nights sleep tonight and makes big strides tomorrow
getting back to our normal princess.
Your love and support for our family is truly overwhelming once again. We love you all and read each and every one of your comments whether it is on the blog or facebook. It keeps us going and gives us hope when we feel down. I say today was a pretty good day with figuring out some of the scary unknowns! Thank you for helping us through it!

Lots of information and changes......

Well.......sigh. Lots going on today and yesterday since we brought the princess home from the hospital on Saturday. This was the consensus on Saturday when we left Bronson: echo looked good except for some mitral valve leakage (which we knew about), belly ultrasound showed a lot of air/gas and didn't look concerning, labs all looked better from previous day after a bolus and continuous maintenance fluid over night, and X-ray indicated pneumonia and was treated with IV antibiotics in the hospital and came home with script for it. I will say that Sunday morning, she ate breakfast extremely well which indicated to us that she was on the upward swing. Throughout the day, she did fairly well and then that evening, she was swollen bigger than ever. Ugh! Worried all evening on what we should do, we let her sleep and then in the morning, first thing, call Meg and the pediatrician. Called both and the decision was to head to U of M. Right decision! Since we arrived at the ER today, we have confirmed that she does have pneumonia and her lab work has improved. All same as Bronson's results. Good! But......after doing another ultrasound of her belly, we were told that her bowel was EXTREMELY loaded with poop! What!? What about the air diagnosis? Grrrrrrr. Wish that was it! On her echo, it concluded that her left atrium is smaller therm her right, of course the mitral valve leak, and her heart is very stiff when it's supposed to be relaxing after it contracts. Both of those things are sign of possible rejection. Sigh. So, being cautious, we are headed over to the ICU tonight for close monitoring as they do the following in preparation for a heart cath and biopsy first thing in the morning: give her an IV diuretic to try and release the fluid from her tissues to release the swelling, give her Albumin to help increase the protein levels in the blood stream so that when they give her more fluids to re-hydrate her, the fluid will hopefully stay in the vessels instead of the tissue. They will also give her a large dose of steroids in preparation for any treatment that needs to be done in case we are dealing with rejection. Now, if it is rejection, we were relieved to hear that this is treatable and she will be fine once the meds are figured out and dosed for her acceptance. Thank You, Lord! Please join us once again in prayer that her little body still likes the donor heart and that we can set our minds at ease of this worry. Amen!
Now, the other issue is with her poor little poop filled belly. Thinking that all of these issues are heart related, they aren't going to worry about
that at this time. One thing first and dealing with the most important one is the priority. After the results of the biopsy, we will be able to move forward with treatment but knowing if it is rejection or not will determine how they go about treating the other things.
Thank you again to all of you who have prayed for us and continue to lift our family. I will update again after the heart cath tomorrow morning.
Heart Blessings ~
Suzie

Home and semi-fixed

We stayed one night at the hospital (Friday night) and Little Miss got some IV fluids, antibiotic to treat what was thought to be slight pneumonia, and let's just say a not so restful night ;-) Having to take vitals at 1am, 3am, and 5am got the princess a little ticked to say the least. She would do fine except for that pesky temperature under the arm get up. lol The girl has been poked so many times but what really gets her is a nurse taking her temp under her arm. Go figure! lol Getting an IV was a challenge to say the least. She still hasn't outgrown her access problem. Took them three times in three different spots to finally get the line in with her constantly screaming bloody murder the whole time. I would say it was about 30 minutes straight. Yes, she napped a little but following that ordeal, we had to take her down for a belly ultrasound to see if there was anything alarming going on. Nothing but hoping that we get a GI consult when we go to U of M on Tuesday for transplant clinic. Lindsay also received an echo which looked just great. AMEN! Rejection is and will always be in the back of our minds and relieved that it wasn't the case THIS time. She received a bolas of fluid and then maintenance from then on. Poor little thing is now puffy all over. But, I will say, it has improved her eating. I just feel in my gut that there is an underlying issue going on hence the wanting of that GI consultation when we go. Lindsay is also getting her ear tubes put in on Wednesday. We got home by noon on Saturday and have been taking it easy getting her to eat, drink, and produce stool samples. Yes, I said it. We have to collect her stools for 24 hours of time. Ewwwww was my reaction. ;-) Oh well. Have to get it tested! So, please pray that our clinic visit for the princess is successful in figuring out her belly problem which is related to her eating and then getting dehydrated problem. It just has to be. Momma knows something ain't right! Here are a few pictures during our stay.

Heart Blessings~

Suzie**

Tough cookie to figure out!

This was Lindsay's foot as of yesterday. Wednesday night, it was even worse. Poor baby has kankles! She has sudden swelling in her legs, feet, and pelvic region. We are headed to the pediatrician this afternoon to try and rule out congestive heart failure. We say that because she has also been congested. Those two things mixed together is not good! Even though Meg, the transplant nurse practitioner at U of M, doesn't seem to think that it is that severe, we were all in agreement that we should go. The good news is that we are going to U of M on Tuesday anyway for her routine transplant clinic check up and on Wednesday she is getting her ear tubes put in. She is also still having her belly issues with diarrhea which also may be a factor since it has gone on since Christmas. Praying for the best and hopefully we will be put to ease later this afternoon. Maybe an echo is in our near future. Thank you again for your constant prayers and support for our family and the princess. We love you all! I will keep you posted!

Blessings~

Suzie