So much to be Thankful for!!!

I am so thankful to be home for Thanksgiving! So blessed with such wonderful friends and family! So thankful to be in such a wonderful church service tonight with my family!!!

Settling In

We have spent the past couple of days adjusting to being home. Sam and I have been enjoying lazy, pajama days with lots of playing and napping :)
We will travel to Louisville tomorrow to see our cardiologist, get labs and a chest xray. Please pray for safe and easy travel, it will only be me and Sam going tomorrow, Brian will be at work.

Playing with his Mickey Mouse and car :)

Home Sweet Home:)

After a very long day yesterday, I am excited to say we are home! Sam did great yesterday, we were all just very tired. He was asleep when we got home, I brought him in, layed him in the bed o change his diaper, I told him we were home and he just smiled and rolled over to go back to sleep :) He has had a blast this morning playing with his toys! I am so thankful to have his lazy, rainy day with my family at home!!!

Kentucky Bound!!!

We are heading to the airport shortly! Pray for safe and easy travels please!! :)

Planning for discharge!

We are once again gearing up to head home! The plan is if there are no changes over the weekend in Sam, then we get to leave Monday. He has been good for a couple of days, with only one incident yesterday morning. I was afraid it was fluid again and his lungs were wet, but his xray and labs looked stable, so we are assuming it has something to do with his morning gagging and feeds. The only thing we do to manage these episodes here is increase oxygen and maybe give diuretics early, which is something we could do at home. We are also adjusting his feedings and diuretics schedule to try to help decrease these episodes from happening. This morning was a little better, and I'm hoping tomorrow will be even better with a little more tweaking. So as of now, we are packing, planning flights, prescriptions, and all the other thousands of things required to be done to get us home! We will not be able to fly out until early Monday evening because getting discharged before noon is probably not going to happen. We also have to pull his pic line early monday morning and watch him for a few hours after. So, we will be getting into louisville around 10 or 11 and will decide based on Sam if we will just stay the night there or drive on home. I am so ready to be home :)   We will not be able to do anything for Thanksgiving or his birthday this year, but as long as we are home and together I will be thrilled. The docs say it usually takes a good 8 to 10 weeks post op for the heart to settle out and relax after this type of surgery, we are only going in to week 4 for Sam. So even though he is doing well and we get to come home, this is still a very critical period for him. We have also always been home before this time of year and are very nervous about sickness and respiratory stuff that goes around. Though we are not usually too particular about keeping him in or having people around us, we have been told that this time it is absolutely necessary and very important. I hope everyone can understand the situation and not be upset that we cannot have visitors. We would love to see everyone, but it is just not safe. We truly appreciate all of your love and support and want you to know we could not make it through all of this without all our friends and family.

New Pictures

Sam has had a good couple of days. We have not been making many changes and doing so very slowly when we have had to change anything. His xray looked good this morning so they are going down on his lasix dose a little bit. If he tolerates this change for the next several days then we should be all set to go home. He will be coming home on three times a day diuretics, which is a lot, but you just have to go so slowly on weaning diuretics with him that they think it is something we can keep working on when we get home with our cardiologist there. We are hoping to be able to leave Monday, but it is all up to Sam!

Playing in his bed before bed time.

The clowns came to visit today!

Sam thought they were great!! They were chasing him up and down the hall as he rode his bike thing :)

Finding the good in the bad...

Sam has had a good day, he has been so happy and smiling all day! We will echo tomorrow to make sure our heart function still looks good, and he will now be on three times a day diuretics instead of twice a day. Hopefully that will be all he needs to get him through for a while. We will need to watch him for several days to make sure this change will be enough. He had been fine on twice a day diuretics since friday and showed no sign of distress until this morning.
I handle the ups and downs around here pretty well, you just have to learn to go with the flow. Stressing out or crying about your situation is in no way going to change things, and will only emotionally drain you more (at least that is how I feel about it). But...I do on occasion have a day when I am worn out in all aspects, emotionally, physically, and mentally, and do get a little down...or more dissapointed than anything. I have always prayed for God to keep me humble in my situation and especially during our trials. Yes, we do live a very abnormal life that most people would look at and have great pity in an instant...but I don't have to look around too long or very far at all to be reminded of just how blessed we truly are. I am thankful that I can always see the good, and be grateful for all of our blessings even in the midst of our messiness....I am grateful that even though I literally have blisters on my feet because all my kid wants to do is walk the halls in his stroller that he is well enough to be off the monitor most of the day and in the halls, I am grateful that even though this was his 5th open-heart surgery that he has recovered beautifully and much quicker than anyone expected, I am grateful that even though we were born without a functioning left ventricle we now have one that is full size and fully functioning, I am grateful that we are not living in ICU, I am grateful that even though we are not flying home tomorrow, we hope to be home soon, some people here have no end in sight...most of all I am grateful that my hope is not in this world and I know no matter how long or hard our journey is here it will all be worth it when we are at His feet, I cannot wait to give him abundant and unending praise for all He has done for us! I am grateful that my trust, hope, love, peace, and promise are all in Jesus!

Bump in the Road

Sam was desating and breathing fast this morning. So after a dose of iv lasix and diuril he is feeling better. But...this episode also bought us a couple of more days here. We will now put him on three times a day oral diuretics instead of twice a day. We have to make sure he is tolerating that before we can go home. Will update again when I can.

Good News!

So....I have some really good news that you have to be very careful talking about around here...I think we get to go home next week!!!! The thing that is hard for people to understand is how up in the air that statement can be even though things are great right now and we have good intentions of discharging soon. The fact is we are still tweaking drugs, and watching his belly for any more signs of trouble... All of which means we can plan on leaving next week, but that plan can change any minute. There have been plenty of families that make it to the lobby and have to come back up, or to the parking lot, etc. So I say with lots of excitement and a little hesitation, we will be home soon!
Sam will be coming home on oxygen, but that does not mean things didn't go as planned or that he isn't doing good. It just means that even though he had a great repair on his heart, his lungs are gonna take just a little longer to recover. He is not on much oxygen and I don't think he will be on it for very long, but for a child that has always needed it for some reason or another, we are going to let him tell us when he is ready to lose it. He will also not be allowed to have visitors or be around a lot of people for a couple of weeks. He is doing well, but he did just have a huge heart surgery and his immune system will take time to bounce back. It is also getting into flu and cold season, and at this point a simple cold or respiratory virus will land us back in the hospital. So this means no big thanksgiving or big birthday plans. We are ok with this and just glad we will spend them at home!

New Pictures

Sam has had a quiet couple of days. We have been slowing working him back up to his normal continual feeds, and he has been tolerating that fine. Tomorrow he should be able to return to his normal feedings and be able to take however much he wants to by mouth. His labs looked really good this morning, his sodium was back down and his blood levels are still normal, which tells us there is no bleeding in his belly. He is pretty off his schedule of sleep, staying up til 11 or 12 at night and not napping til 2 or 3, but when he sleeps he sleeps good. He is finally getting back to his old self laughing and playing and smiling! I stay busy with him all day now, but I am just glad to have my boy back!!

We have made some great friends during all our time spent in the hospital. Georgiana was born when we were here for our first trip to Boston and I love her and her family so much. Having her mom Angela here at the same time we are is such a blessing to me. She's not only like having a great friend living with you in the hospital, but she knows exactly how you feel and what your dealing with on a daily basis. As much as they love and care about what is going on with us here, no one at home could ever really understand, and I know that. I am grateful for the love they give us, but having the support of another heart mom helps you get through each day. They are planning to discharge Saturday! I am very excited for them, but will miss them terribly! 

Sam and Georgiana stolling the halls.

Sam listening to his own heart with one of his favorites, Christine!

Another wonderful family we have met here, the Murphys! This is Miss Katy who is waiting for a heart. BUT, she is waiting at home!! She had a short inpatient stay and is back to her old, adorable self. I pray she continues to get to wait (and soon receive) her heart at home enjoying the simple pleasures of toddler life with her mom, dad, and little brother patrick :)

We also received a wonderful gift from Mr. Aidan and his family today, Cars 2! Sam is so excited! Thanks so much to Aidan's mom, Sam, and grandma, Diane, for their kindness. We have the nicest friends here in Boston :)

Doing OK...

Sam is doing ok today...not great, but not terrible. He was very close to going back to icu, but we got to stay on the floor and our nurse only had him and one other patient. Early this morning his labs showed some of his numbers had dropped from the bleeding, so we transfused him. He looked much better after he got the blood. His belly was really hurting him, but after he finally pooped he felt better for a while. He has been wanting to throw up all day, his belly has all that old blood and crud in it...his poop is literally globby old black blood that has a distinct smell you could never forget! YUCK!  They started him on iv protonics which is like prilosec but stronger and given in iv form. Also giving him zofran for his nausea. The plan is to check more labs tonight and make sure his blood counts are holding and not trending down again. This will let us know if he is actively bleeding. If his counts drop again, GI will have to scope him to see if they can see the problem. If everything is fine, then we give him some time to let his belly settle, try some pedialyte and see if his poop normalizes. GI's thoughts are that it is possibly an ulcer that bled, and/or stomach irritation from not being on prilosec (said even our home dose was low and will increase it when we leave) and/or stress from surgery plus the aspirin he is on along with the heparin he gets his lines flushed with. Really it is probably a combination of everything, plus he has been drinking much bigger volumes of formula during the day than he had ever been used to having, so that is just more stress on his belly.
He is resting now, and I am hoping he has a quiet night and sleeps well. He didnt get too much sleep last night and hasnt napped well today. I will keep you updated with any new info!