Home!

After much negotiation, we are finally home. Oxygen and all ;-( At least it is just at night. Always something new with the princess. ha ha I'm sure it will take a while for this RSV and whatever bug that she has in her lungs to go away but whatever concoction of antibiotics she was given and breathing treatments, it sure has made her our Lindsay again. Feels so good! I will post pics very soon from our recent stay at Hotel Mott! I just wanted to let you all know that we were home.
thank you again for your continuing prayers and support for Lindsay and our whole family!
Heart Blessings~
Suzie

Spoke too soon......

Dang it! I hate when I open my mouth too soon! Lindsay was doing fantastic yesterday evening as far as her saturations without the cannula but overnight was definitely NOT the same story. Overnight, she kept alarming and ended up being on 1 liter of O2 until the morning. Throughout the day today, we have been weening still and she is currently on 1/4 Liter and sating around 95%. So, trying to get out of here as soon as we possibly can within reason, we did allot of P&PD on her and some suctioning to see if we could get some of those deep goobers if there were any. We did get some so hopefully this will help this whole process throughout the night. New goal......Thursday. Cross toes and fingers please!
Love to you all!
Suzie

PS Claire was moved to Moderate Care today and she looks fantastic!! Brittney and Jen Butcher drove down today to see her and we were able to spend some time with them too. God is good!!!

Cannula free??

I think so! Lindsay has had a fantastic day eating and weening off her oxygen. As I sit here updating, she is currently without her cannula and her saturations are consistently staying around 94-96%. Good job Princess!!!! Dr. G said that as soon as she weens off oxygen and does well for a while without it, we can get out of here! Crossing fingers and praying for a great night! Maybe discharge for Wednesday but wishful thinking for tomorrow. Man she looks sooo much better!! Because of all of your prayers once again, the princess has prevailed! We are so lucky to have you all. Thank You and thank you God!

Prayers for Claire

Claire (the girl that we all prayed for and then the new heart ended up not being the perfect one) got the call this morning!!!! Please put her in your prayers today and also the family that is going through such pain today with their child. We are thanking them for making this selfless decision to donate their loved ones organs. Looks like surgery won't be until the wee hours of the morning but starting the prayers now would be appreciated. God is good!!!


PS The princess is getting better little by little. She was down to 1/8th liter of oxygen and then had to be bumped back up to 2 liters again. Currently she is down to 1 3/4th liters and her oxygen saturation's are much improved than yesterday morning. She also appears to be more comfortable breathing as well. So, today will consist of more "pounding" and getting her to take in more fluids to help release all the gunk in her chest. As all of you know, the princess does things on her own time. ;-) Hugs and love to all of you!
Suzie

A little progress.......

So in rounds yesterday, it was decided to put Lindsay on a steroid to try and reduce inflammation (if that is what the problem is) in her lungs because now the x-ray indicates a problem now more centered and left instead of lower and the right side of her lungs. So, does that mean that pneumonia is gone and we have another issue? Maybe. So far she is coughing better to get things out of her lungs and it appears that the steroid is working. they have scheduled for her to be on a five day regimen of this and praying that this does the trick. In the meantime, she is still getting breathing treatments and LOTs of percussion! JR went home yesterday to be with the boys and they were just elated that he did just that. I am hitching a ride home with the Winter's today to get the van and that will allow hubby to work this week and not have to come back to get us when Lindsay is released. Why do things have to rotate around work?? Oh yeah, that insurance thing! ha ha Good news is that this morning, Lindsay woke up asking for her bottle and drank 150 cc's! That is definite progress from previous days. Now, we just have to keep that going so that she can get off her supplemental fluids via IV. Please continue the prayers for the princess! Man, this lung business is almost as scary as the heart stuff! Momma needs another vacation!!
Heart Blessings~
Suzie

PS Please included our sweet heart friend, Evie, in your prayers. Recent echos indicate that she may need more surgical repair soon due to her transposition surgery shortly after she was born. Oh, Evie, we love you and pray for you always!

Workin' on Gettin' outa Here!!!!

In rounds this morning, Dr. G said that the only reason that she is still here is that she is still on O2 and is not eating. Soooooo, Lindsay is down to 1/4 liter on oxygen and has eaten baby bananas and some cheerios so far today. Can you tell I want to blow this pop stand?? Operation "Take a Bottle" starts immediately!! The girl refuses to take one so just for kicks, I am having her checked for thrush and checking her throat for maybe some redness at all. There should be no other reason for her not taking a bottle. The girl LOVES her bottle! Other than that, we lowered her IV fluids to try and make her thirsty. So, maybe later today, that will make a difference as well. I also have some questions to ask as far as if she is still aspirating a little ( Thanks D!) . I say that because her pneumonia keeps returning and there must be a reason for it.! Oh, and she was positive for RSV. ;-( She tested positive a few weeks ago too.
Lindsay was playing a little after she ate today so I know that that is the ticket for departure out of here! Please continue the prayers for the princess. We love you all and look forward to sharing more good news soon!
Heart Blessings~
Suzie

PS Thank God we already have our taxes done!!!!

LONG night....

Well, it was my turn in Lindsay's room last night and after sleeping all day, she certainly didn't want to sleep very well last night. So, today, I feel like a zombie!! Lindsay had her echo yesterday to help determine whether or not she was dealing with rejection and.........NO REJECTION!!!! Every time that I hear that, I could just kiss and hug whomever it is that tells us! God is good!!! Throughout the day, despite adding another antibiotic to her list of meds, Lindsay still wasn't improving. So, now she is doing breathing treatments to try and loosen all the stuff that she has in her lower right lobe. Poor girl looks like she was hit by a truck! Today's plan of attack is to try and get her to eat. Seems easy but the girl has no interest what so ever! We tried some baby bananas this morning and surprisingly, she did quite well. She ate 3/4ths of the small jar but still has no interest in a bottle. We will keep trying so that she will feel stronger. Thank you for all of the prayers! We know that He listens to all of your pleads!
Heart Blessings~
Suzie

I am finally getting a breather......

After a pretty uneventful evening, Lindsay is still resting and being treated with a bigger antibiotic to attack whatever it is that is making her feel like poop! It was confirmed by xray last night that she does have pneumonia, again!, and something else that is making her vomit, have diarrhea, and having fevers. So, in the ER, they put her on Vancomyacin and has been getting it every 6 hours since. She also got some much needed fluids through IV and had labs drawn to try and get any idea of what else is festering. So far, all things are looking normal......except for the princess. Boooooo! She was a happy little girl last night after getting the fluids and some pedialite, but after sleeping rather well last night, she has just been a zombie. Poor baby! Since we were supposed to have our clinic visit today anyway, Lindsay just finished with her sedated echo and EKG. So, it will probably take all afternoon for her to come around after being knocked out for the procedure. We will speak to Meg and Dr. G later today on the results. Looks like we might be here for a few more days so I have been trying to get us in at the Med Inn. We shall see. In the meantime, I might go hunting for a comfy chair to sleep in tonight!! ha ha Continue to pray for the princess as rejection is always in the back of our minds. It really hasn't been talked about since that is not what they think is wrong. But, I'm a mom and can't fight the fact that I always worry about that. Love to you all!
Heart Blessings~
Suzie

To A2..........

Lindsay hasn't been able to get rid of her cough, fever, and bronchial mess so I took her back in to see the doctor this afternoon. No appointment, just showed up ;-) Lindsay's got it like that ;-) Anyway, long story short, Dr. didn't like what he saw and she's not getting better on stronger antibiotics, so off we go. I will update when I can.
Loves~
Suzie

Let the good times roll!

Our last beach day in SC was wonderful! The Butcher's came over to Charleston to spend Thursday and Friday with us. Our time together was so incredibly special. I didn't want it to end! Lindsay and Luke (kinda rolls off the tongue, huh? hee hee) thoroughly enjoyed their first time playing in the sand. Too cute for words is all I have to say!

I couldn't help but to buy this ADORABLE bathing suit from Old Navy!! A princess is always a princess! She's helping daddy and her brothers "dig a BIG hole", as Cruz said!

Well, y'all, we made it just in time for the Easter Bunny. And let me tell you that the Easter Bunny BARELY made it!! Yes, Lindsay is in Christmas pajamas!

I love and will cherish this photo always. Love you, friend!

Saving one of the best stories for last. Meet Jeannie. Jeannie is also a heart recipient and in February, she celebrated 3 years of new life with her new heart. She has been following many blogs, Tommy's included, and Lindsay's was one that has touched her in so many ways. We had the privilege of actually meeting her and her whole family on our last night in Charleston. Tears flowed and fate made this meeting happen. God is good!! You can catch up on her journey by going to http://www.1happyheart.blogspot.com/. Thank you, Jeannie, for "stalking" us!! ha ha Some things are just meant to be!

My Heart is FULL!!!!

Beach Baby!!!!

Makes me tear up.......

Family photo from dinner last night. Can't go wrong with Bubba Gumps!

Aunt Carole and Lindsay..........so great!!

My special beach baby! The girl LOVED the sand!

Cute little piggies...