Friday, October 31, 2008
We are off to spend the evening with the boys. JR and I are going to see Lindsay this morning and then off we go. Picking Cole up from school, I'm going to work a little, JR will mow the lawn(with Cole's help I'm sure!), pick up Cruz from Brenda's and then Trick or Treating here we come! We are looking forward to a night devoted to them. I will update in a few days and with pictures from the big night tonight! Love to you all!
Thursday, October 30, 2008
Love, Suzie and JR
Tuesday, October 28, 2008
Monday, October 27, 2008
Sunday, October 26, 2008
I will let Suzie go into her educated medical explanation when she updates us.
Saturday, October 25, 2008
Enough for tonight??? WHEW!
Hearts Hugs to all and .......GO BLUE!! Beat State tomorrow. Sorry Alison. :-)
Friday, October 24, 2008
Wednesday, October 22, 2008
JR and I are headed home tomorrow morning to get some things at home taken care of since we will be here for another couple of weeks probably. Meaning taking home the capris and shorts and exchange them with winter jackets and blue jeans!!! Man, has it gotten cold!! Hopefully I will have time to make some home made goodies to bring back for lunches.
OK, now for those of you attending Friday nights football game. Keep in mind JR's suggestion was never intended to be followed through with so PLEASE take lots of pictures!! All of you are so wonderful. I tear up every time I think about what you are doing for us. It is AMAZING!! "Friends are God's way of taking care of us."
You all are truly our gifts from God!
Suzie and JR
Tuesday, October 21, 2008
Lindsay has had a wonderful day and eating like a little piggy. She is up to 80 cc's every 3 hours and not one spit up! She has taken allot of that in her bottle but, if she is sleeping, we don't awake the princess, :-) and just give it to her in her NG tube. She is still doing well with her weaning and might be in moderate care tomorrow or the next day. We shall see. There is one medication that she is still on that is holding her back from the move so hopefully by Thursday we will have a new address in this place! There is a picture below of another nurse favorite of ours, Jen Alberts. As you can tell by the little grin on Lindsay's face, she kind of likes her too. Yes folks, she is smiling!! I can't even begin to tell you my feeling when I saw that again for the first time in almost 3 weeks!
Praying for Lindsay to continue on her good feeding frenzy and to tolerate weening off her meds so that we can get the heck out of the PCTU. Love all the people that work in POD A but it is time to leave ...and soon!!!! We will miss our nurses for sure! We will be back again relatively soon though.
JR and I have a meeting ,about Lindsay and getting her on the transplant list, tomorrow with a few people from the transplant team and one or two of the cardiologists. So, big day I think. Lindsay is also getting her ART line out tomorrow as well. (the other line in her groin)So, off to bed I go but I hope these pictures make everyone sleep well tonight.
Heart Blessings from Ann Arbor!
PS Elaine.....Jr was reading your post from earlier today and he said that you should wear big pink bows on your head instead of ribbons! ha ha Seriously, you all are so incredibly giving, it is unbelievable. We are so blessed with awesome family and friends. We are very humbled as to what everyone is doing for us. From the bottom of our hearts, and Lindsay's half of one, we love each and every one of you
Monday, October 20, 2008
Sunday, October 19, 2008
Thursday, October 16, 2008
If we take her home in a week or so and then have her evaluated as planned in 2-4 months time, they could potentially tell us that she will not be able to handle the hemi again and will want to put her on the transplant list at that time. Not knowing what her condition will be a few months down the road, it may be too late for her and be too sick, and this way if she hasn't had an offer for a heart, she is then higher on the list and the chances of getting one are much better by that time if we do it now. The only down side to this, and Jr and I promised that we would be mentally ready, is that realistically we could get a call next week. Now that is just a "for instance" but who knows, it could happen. If that were to happen, we cannot turn it down whether we are ready or not. It is a BIG thing to decide to do this but so that all of you understand, she would have eventually needed this anyway. So, no big shocker to us that we had to have the meeting yesterday. We are just having to talk about it sooner than we thought. Her function now was the stick that broke the ice and who's to say that it will ever get better. Dr. Devaney talked to us briefly this afternoon and agreed that we have made the right choice. He was starting to head in that direction for Lindsay anyway. So, that made us feel even better about that. Ok, ask away because I'm sure one of you has a question that I didn't cover....mmmmmm Amanda maybe?? ha ha Please feel free because it may help us ask a question to the docs that we haven't thought of. You never know!
Like I said, allot to digest so hopefully I have explained what I needed to so that you know what we have coming ahead for the princess.
Oh my gosh, almost forgot!!....the princess was extubated today!! That's right, no ventilator!! She looks so good and so we will be able to hold her. I'm thinking tonight. So, I will post photos again when we return from our evening visit.
Keep the prayers flowing. The man above loves us sooo much!!!
Love, Suzie and JR
Wednesday, October 15, 2008
I went to Ann Arbor tonight because I needed a fix. After seeing Lindsay Sunday night, I needed to go over to see her doing better and she surely kept her end of the deal. She looked like our little princess again. She looks like a dark haired little Cruz laying there.
Suzie will share the details, I just wanted you all to know how much better she looks.
Tuesday, October 14, 2008
I just got a call from Steph and she is on her way to see us! So, we have something to look forward to today for our distraction. She said she couldn't stand it anymore. We can't wait to see her!
Keep sending prayers to God above and hope that her heart rhythm straightens out soon. Oh, and now it is time to pray for pee again!
Monday, October 13, 2008
We love you all and you all have a special place in our hearts!
Love, Suzie and JR
PS Didn't post a picture because we have all seen enough of Lindsay with a ventilator in and her eyes shut. The next, she will have eyes open and hoping that tube is outa here!
Pray, Pray , Pray....because if this doesn't work, which we should be able to tell in the next day or two, I'm not sure what the next step is.
Love to all!
Sunday, October 12, 2008
We love you all and again, appreciate all of the love and support through this very difficult ordeal. Like, Stephanie said, down on your knees and pray that we get a solution so that Lindsay can move on to whatever is in store for her and to what God has planned. Aunt Carole and Uncle Robb, kiss our Cruzer for us! And Steph and Bob, give Cole hugs and kisses from us too! We love you!
Saturday, October 11, 2008
Love, Mommy and Daddy
PS Mark, I added the second song on here just for you! Enjoy! ha ha GO BLUE!
Friday, October 10, 2008
We had some visitors today and was wonderful to have distraction and also a conversation other than about medical related issues. Thanks for coming to see us Rodd, Shawn, Adam, and Brian! And thanks for lunch too. Angelo's was good as always. We look forward to our visit with Shannon tomorrow.
JR and Suzie
Love, Suzie and JR
Thursday, October 9, 2008
I'm headed back to KZO to Bronson Hospital to see Cruz and of course, Bill. Don and Sue are going to take over tonight so that Bill can come home and get some rest. I don't know how we would have gotten through this if we hadn't all worked together on the coordination. Luckily Aunt Carole and Uncle Robb are home from their cruise so they pitched right in helping and also Bob and Steph. Three kids is a juggling act even without throwing in sickness.
We really owe this glorious day to God and all of your prayers to our Lord above!!!!
THANK YOU ALL
Wednesday, October 8, 2008
Love, Suzie and JR
Suzie and I are headed back to Ann Arbor. Bill is with Cruz at the hospital. If any of you can go up and give him a break to get lunch or supper, that would be great! If you're lucky, Cruz will be sleeping when you do.
Noontime we had a family gathering and designated who was going to do what. Nothing their doing for Lindsay is working and she's having a tough time. The four surgeons are meeting this afternoon to discuss what they are going to do. Lord, please guide them to make the right decision. It's in his hands.
I'm going to do my best to update you on what's been going on. Suzie continues to be at Cruz's bedside, Cole got passed off from Don and Sue back to Bill and me, and JR continues to be in charge at the U of M with Lindsay. Cole goes to young 5's right at the end of our street and Stephanie Winter is picking him up and dropping him off or either Bill or I can do that so he won't miss any school. (Trying to keep some normalcy for him)
We left Bronson shortly after 12m with Cole in tow. We stayed with Cruz so Suzie could run home and get another change of clothes. It's difficult for her to get a chance to even leave his bedside, 'cause now she is all he wants! Suzie and Cruz had visitors last night. Fellow stalkers and two of our great friends, Tina and Elaine were able to meet each other as they stopped up to give Suzie some support.
This morning's update is: Cruz now has strept throat. Dr. Sommer's was in this morning and said that she's never seen this before...Usually stept throat preceeds mono...Bill and I had looked that up on the internet after we had him at ER a week ago today. His stept test was negative at that point, but the mono test was positive. The good news is that the antibiotic that they have had him on IS the correct antibiotic to treat the strept. So they made a great call to use that one.
Meanwhile in Ann Arbor......
JR oversaw (not visually) a heart cath on Lindsay yesterday which indicated that the pop off vein had gotten much bigger over the last 24 hours. The Dr's coiled it in order to stop the blood flow to the heart. This blood flow is suppose to go to the lungs after this 2nd surgery. As soon as they inserted the coil, Lindsay's oxygen level increased significantly!
The conversation between the surgeon and JR, after this proceedure, concerns us because the Dr. is hoping that this works because the alternative (putting in another shunt) doesn't look good. The Dr. indicated that he doesn't think that Lindsay's heart would tolerate another shunt. We are wondering if another alternative might be to put her on a list for a transplant? We wait to see..........
Our prayers are: Lindsay needs to tolerate her feeds in order for them to be able to start the Viagra. This is her best chance to overcome her issues. We also need NO MORE POP OFFS!!! Her oxygen levels need to stay improved! We pray that Cruz continues to improve so that Suzie can be back with JR, who must feel so alone over there by himself in Ann Arbor. If anyone has a day off, please call him to see if he wants company!
We continue to be and think positive, but I see Suzie becoming worn out. She still amaizes me with her strength and outlook. Let's all do our best to lift them up!
Heart hugs to all,
Tuesday, October 7, 2008
They still feel that this was a side affect of the mono.
I'm sure Suzie will update after he's out of recovery. I'm trying to keep my new job, so I'm back at work after surgery.
Monday, October 6, 2008
The Dr's have talked to her and have scheduled Cruz for surgery at 7:30am. They do not anticipate the antibiotic to have much effect on the lymph node. We've asked for a bigger bed so that Suzie can sleep with him tonight.
I don't even know what to say, except, we are all there for them through this time of need.
So......Suzie went in to see Lindsay again and is now on her way back to Kalamazoo to be with her sick son. JR remained in Ann Arbor with Lindsay. Don, Sue, Bill and me are with Cruz and I assured Suzie that one of us would be with him at all times, but respect her decision to come home.
I ask you all....what would you do?
Lord, haven't they had enough?
Thank you to Steve Murray who was the designated driver today ('cause ya know Bill still can't drive) with the Dr. visit and then to the hospital for tests and stayed through admission. What on earth would we do without our extended family?
Keep the thoughts and prayers coming.
Please add our son, Cruz, to your prayer list. He is having a cat scan done at 3pm this afternoon to take a closer look at his very inflamed neck due to the mono that he has. Lord help us! The testing has begun again I think. Have I mentioned that I'm loosing my hair?!!! Wonder why.....
More updates tonight~
I would like to invite you to view pictures at Portraits by Patti. They are located at http://www.pattisportraits.com/clients.
When you go to the website click the Access Gallery link and enter in the access code below:
Access code: princess
After you do that you will be able to view these pictures.
Patti has also been gracious enough to offer 50% off any individual portraits that you would like to order. The offer code is princess for the discount.
Sunday, October 5, 2008
Tomorrows plan is to start working on weening the vent. They are waiting until tomorrow to give her time to recover from the chest closure today. One step at a time is all and she is doing good again. Keep praying because it's working and He is hearing us!
Saturday, October 4, 2008
Friday, October 3, 2008
Keep the prayers coming. They are definitely working and being heard! Talk soon and I will have photos for you to look at too! GOD is soooo good!!!
Thursday, October 2, 2008
Wednesday, October 1, 2008
Please be with our daughter tomorrow. We pray that your hands are holding her and guiding her towards a beautiful recovery and back in our arms in no time. We pray that you are with all of the surgical staff tomorrow and that they are on their A-game tomorrow. Lindsay is stronger than we could ever have imagined and we just know that you will take care of her. We thank you everyday that we have such wonderful people that support us and support our choices for Lindsay to have a shot at life. I'm am certain that you have chosen her to serve you and have a long and happy life. Tomorrow is another miracle day and we know that you have the power to make this miracle happen.
We have had Cruz all week and yes, the poor boy has Mono. Two years old and he has Mono. Can you imagine the week that Suzie and JR would have had at Disney with Cruz. Isn't it funny how things work out?
Bill and I took him in to the hospital last night as we thought his condition worsened. I have to tell you when we checked in we were told that they had never had such a prepared letter of authorization, even notarized, so that we could get the necessary care for Cruz. That's my daughter! I don't have to tell you how proud I am of her and of JR. What a wonderful husband and father she choose for her soul mate.
We returned home from the hospital at 3:30am when Cruz was released, only if we promised to get him to the Pediatrician today. Well, thanks to Papa Don for coming to our rescue to take him. For those of you that don't know, I've taken a new full time job as the Assistant Program Director for five local radio stations and Bill can't drive, so I really needed help today. I had already planned to take off early tomorrow to go to Ann Arbor, so Don really helped me out. Thank you, thank you.
Bill has been taking care of Cruz this week and doing an outstanding job. He has so much compassion for him and how miserable he is. Because my job is so close to home, I'm only gone for four hours at a time.
We're all excited to see Cole returning from his Disney trip with the Winter's. His Uncle Dan is going to pick him up at the DTW airport tomorrow night and we'll all gather in Ann Arbor after Lindsay's surgery. Don't worry, I won't be taking Cruz anywhere near U of M. Dan's on the road this evening from Pensacola to come up for the weekend to be with the family and oh yeah, there's a Michigan game Saturday.
Well I sure know I need some sleep tonight to be there mentally and physically for Suzie and JR tomorrow so it's off to bed for me. Cruz is already down, but with mono, he's sleeping a lot. We'll keep up with updates as well as we can tomorrow and thanks for all your prayers!