Finally an Update!

I know it has been awhile since I have posted on here, but with no Internet at home it is hard to find the time. It also means that no news is usually good news :) We started off December with a weekend long celebration of Sam's birthday. Since we can't have him around large groups of people we had a few people over each night to get our family and friends in on the festivities. Sam really enjoyed this and this also allowed him to spend more time with each person instead of a huge group only around for a short time. The following weeks were spent with a couple of dr appts and labs/X-ray, and we started going to speech again once a week. Nothing too exciting other than getting ready for the usual Christmas stuff until Saturday the 17th...I was in Owensboro shopping when Brian called and said Sam jumped off our bed. I came home to find him holding his leg and screaming. Off to the er we went and he did indeed break his right leg! It isn't a bad break and it is in place, so we are lucky to only have a hard splint to wear instead of a cast. We see the ortho dr again January 16, we just have to keep it protected and no bearing weight until then. He had a rough week after this incident, some desating and higher oxygen requirements than he's needed before, so we made a trip to Louisville just to be safe before the holiday weekend. Everything checked out fine and it is hopefully just a slight hiccup for him that we may see from time to time. We had a wonderful weekend with lots of opening presents and lots of family and food, of course! We will do labs tomorrow and speak with our cardio dr on wednesday to see when we need anoter checkup. I will try to get to a computer soon so I can upload some new pics :)

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!

Prayer Request for Sam's belly...

Sam has blood draining out of his gtube... He was getting settled in bed for the night, drank 100ml of pediasure, like always, and was hacking and coughing like he does. He spit up a little formula and mucus which is also normal for him, but it had quite a bit of dried blood in it. I still would not have thought too much about it, he hadn't got his Prilosec for a few days and I didn't realize it, so we just started it yesterday and I wasn't surprised with a little blood. We sat him up to change his clothes and I could see the dark blood had come to the surface of his gtube button, when I drew back with a syringe, it was all blood. We have done a belly X-ray, which looks fine, drawn labs, put his gtube to drainage and see what happens from here. He is npo as of now and all his meds are back to iv for the night, and he will also get iv fluids since he's npo. Please pray this is something minor with an easy solution and explanation. Will update tomorrow with any new info.

Happy Halloween!!

We have had a pretty good day. Sam slept well last night only waking up twice. He had the same type of episode of breathing fast last night, but everything else was fine...not sure what is going on with that. We weaned and spaced his sedations drugs today, so maybe tomorrow he won't be so sleepy. He slept til 8:30 this morning, got chest xray, bath, dressed to trick or treat, we went to one floor and he was asleep. He took a four hour nap, was up for a couple of hours, and is currently napping again. We are trying to change another diuretic over from iv to oral today, we will just have to wait to see if he tolerates it. Here are some pictures of my little lion :)

He didn't mind the costume, he was just sleepy and wanted his bed!

This face says it all!!!

Slow and Quiet Weekends

We have had a good weekend, not too much going on. Yesterday they tried to make one of his iv doses of lasix to oral, but he had an episode last night of desating and faster breathing. We gave him a dose of iv lasix and an albuterol neb and he settled out fine. Brian flew home early this morning, and we are already missing him! Sam has spent the past two days walking the halls in the stroller or napping. He is still on pretty good doses of methadone and ativan and getting one or the other every two hours. We defintely need to come down on those because he is pretty out of it. I think that is why he is not tolerating the wean in diuretics as well too...the farther out from surgery you get the more you should be able to wean, but he isn't doing anything but riding in the stroller or laying in his bed, he doesnt want to play or walk or anything. Hopefully that will change in a day or two.
Tomorrow is Halloween and they do trick or treating here at the hospital. They will take the kids to all the different floors to get candy. We have a costume, not sure if he will wear it or not, and I am also wondering if he is going to sleep through it! If he does that is fine...trick or treating is not my priority at this point!

Halloween pajamas this morning.

Woody pajamas after we got poop all over the other ones :)

You can tell by the pictures how out of it he is...not himself yet, but not constantly screaming for a drink either, so I'll take it! Funny how quickly your perspective on things change around here.

Pictures for Today :)

Morning Nap

Walking the halls in my Halloween shirt, still pretty sleepy...

Drinking my formula. The sippy cup didn't last long,

he prefers a straw :)

Finally some rest!

Sam finally slept good last night! His sodium is down a little more and he has been happy drinking his formula this morning, he even turned down a Popsicle. He has been napping most of the morning after he got a good wiped down and clean clothes. I'm hoping he is my old boy when he wakes up, I know he is on his way finally :)

Better Afternoon :)

Sam has had a better afternoon taking two naps and lots of strolling through the halls. We gave him 100mls of formula after his first nap, then another 100ml an hour later and then he fell back asleep. I think getting his belly good and full helped him to relax a little. Hopefully we can continue on this type of schedule to get him through this.

Here he is eating a popsicle yesterday.

Strolling the halls this morning.

Focusing on the bigger picture in our situation...the blue number (oxygen level) is 100!!!

We have always been happy if it was above 70 before this surgery.

So through it all we can always say, God is GOOD!

Friday....

I am out of clever titles for the moment... Everything is pretty much the same today. His sodium is down a couple of points but you can't tell him that. He is only sleeping for a couple of hours at night, the rest of the time he just lays and cries or tries to get out of his crib. They did an echo this morning and it look good, which is good news. We are going to continue to slowly go down on his diuretics and this will help his sodium come down. It has to be a slow and steady process, if you drop it too quickly it will cause more problems. We will get there, but not quick enough for Sam...

Moving on up....to the east side...

We are moving over to the floor sometime today. This is really good news because that means he is doing that much better, but I am nervous because it will mainly be me having to tell him no about drinking now. I have kinda just stayed back or left the room during his fits the last couple of days and let our nurse handle him, but on the floor our nurse will have other patients and cant stand in our room all day telling Sam no. We are going to let him drink some of the formula we have been tubing. This will increase the amount he can have by mouth a day because we will just cut down what we were giving him by g-tube. We also figured out the math that he can have a half a popsicle every two hours, which is a pretty good schedule, plus what formula he is allowed to drink. I never thought he would be drinking his formula by mouth, but he just downed 50ml! He is still on a continual infusion of milirinone through his pic line, but maybe sooner than later he can switch that back over to his captopril. I will try to update later today once we have moved and are settled. Say a prayer about our move...I am very nervous about a roommate, and about the whole room situation over here. If he is on the B side of the room he will be in front of the sink, which is a disaster, and if he on the A side and has a roommate he will freak out if he sees stuff to drink carried in the room. It is killing me because I am sure I won't be able to give him a bath until we are past this, (you know how I am about baths!) thank goodness he got one night before last. He is very creative in trying to get water...grabbing the wipee you are wiping him with and trying to suck it, disconnecting his oxygen to get the water that humidifies it, and trying to grab the meds from the nurse to drink them, etc! I am sure we will figure something out to get him through this :)

No pleasing him today!

The ONLY thing Sam is interested in is "more!" More to drink and more pink swabs is it. He is literally hysterical about it at this point. The only way he calms down is if you put the rails up on his bed and walk away either sitting in the back of the room or leaving completely. He can have some water by mouth, but we have to limit his total intake to 300ml, which is not satisfying to a kid that will down 50ml in about two seconds. It is pretty pitiful, but there isn't much we can do about it. If he has too much fluid it will go straight to his lungs. They are working to get his sodium levels down, them being too high is what makes him feel thirsty. They are so high because we are diuresing him so much. We are weaning his high flow oxygen and can hopefully switch him to the wall later today. They pulled his art line out, so now all he has is his pic line in his upper right arm. We are slowly making some progress :)   Please say a prayer that his sodium levels will come down. If he could get over being thirsty, he will pretty much be back to his old self!

Sound asleep when we got back from lunch :)

More, More, MORE!

More is all we are hearing from Sam, he is wanting to drink constantly! I am sure it is because we have been diuresing him so much, but he has been very fiesty about wanting to drink. We have to be careful because he is on high flow oxygen and sometimes that can make them aspirate easier. So we have these pink swab things on a stick that we dip in water, and he sucks on them til the water is gone and spits them out demanding, "MORE"! We are hoping the medication we switched him to today will help clear his lungs up a bit while serving the purpose of the drug we took him off of, which keeps his blood pressure and heart rate down. If this does the trick it is a medicine that can then be switched to oral doses. We are making some good progress!
Brayden's surgery went well today and he was already off the vent, awake and talking this afternoon! I give God praise for having his hand on him!

Heading in the right direction!

Sam's ammonia levels are starting to come down, and he is already more responsive. He has been looking at us and talking a little, and watching Mickey Mouse Clubhouse :)    We are making some changes to some medications he is on, and this will hopefully make him feel even better. He is also being feed, which I'm sure makes him feel better too. Not making too many changes today, just glad he is getting back to himself. He is already being very rotten about one of us having to sit beside him all the time...but we are more than happy to!
Brayden is out of surgery, but they haven't got to see him yet. Please say a prayer there will be no lasting effects of his episode this morning, and that when he wakes up he will be back to his old self!

Prayers for Brayden Please!

Please lift up Brayden Morris in prayer this morning. He is our fellow heart friend from home (Bennie and Melissa's son). He is at Kosairs in surgery right now having his pace maker replaced and a defibrillator put in. He has had a very rough morning! I know they were in the hospital waiting for surgery, but things got bad while he was in preop. Pray surgery goes well, his little body handles the stress, and this fixes the problem.
Sam is a little better, I will update in detail after rounds this morning.

Hanging in There...

Sam is still having a rough time. He is having withdrawls today and not resting very well. He did get some sleep last night. The medicine they are giving him to bring his ammonia levels down makes you poop, so he literally is pooping at least every hour, hard to sleep when you are constantly being changed. The good news in the situation is that from a cardiac stand point he is doing good, and respiratory is slowing getting better. His xray this morning looked better than yesterdays. He is very "dry" but we have to keep his fluid balance at least even, if he gets positive it will make his lungs wet. We are going to check ammonia and sodium levels again this afternoon and make sure we are on the right track. 

Exhausted...

It is amazing to me that I can get about 7 hours of sleep and still be absolutely exhausted! Brian let me go to the sleep space last night around midnight while he pulled night shift with Sam. I think Sam slept a total of 30 minutes last night. Now, Brian is downstairs sleeping, and Sam is finally taking a little nap this morning. He is doing ok....but still far from being in a good place. They checked his liver function and some other labs this morning and found his ammonia levels are really high, but his liver function is normal. When your ammonia levels get that elevated it can cause your mental processes to not work well. This could be a very good explaination of what happened yesterday. We are not sure why his levels are high, but this is something they are seeing in kids that have this bi-ventricular repair surgery, especially in kids whose anatomy was reversed from their original single ventricle path. They have started some medicine to help those levels to come down, but it could possibly take days. We are also starting back his methadone and ativan at low doses to prevent withdrawl and I am hoping he can get some rest with these. His little body is beyond exhausted, and he needs some good rest to help him recover. He had a little period last night when we switched him from c-pap to high flow nasal canula when he was drowsy, but alert and knew who we were. He was saying "more" wanting to drink, when I would tell him i loved him he would say "love you" back, he was saying "daddy" and so on, then after about ten minutes he was out of it again. Because he is so disoriented he isnt taking the best breathes and having trouble moving air through the lower lobes of his lungs. We will do some chest pt to try to open things up and get air moving a little better. He was a little postivie this morning and his xray looks a little wet, so we will add in more diuretics if needed to make sure he is negative in the morning. Thanks for the prayers and please continue :)

Heading in the right direction...

Sam has had a decent afternoon...his numbers in his blood gases are still going in the right direction and holding steady. He will stay on c-pap tonight and maybe tomorrow we will be able to go to high flow nasal canula, we will have to wait and see. Just pray he has a quiet and settled night...he, of course, hates the c-pap and the more he is awake he is fighting it. We are being very stingy with sedation drugs because he has been so out of it all day, so pray he doesnt go into withdrawls.

Not a good afternoon!

Sam was fine off the ventilator for a little while, then all of a sudden he was struggling to breathe. They tried a nebulizer and he was still really out of it and not doing well. I said I was extremely concerned because I had never seen him like that, and we got the head doctor in the room. There was a thought of reintubation, but the bigger issue is we had no idea of why he was fine and then was not in a such a short period of time. We are still not really sure. He is on c-pap right now and his numbers are heading in the right direction. He is still really out of it, and he looks terrible. They did start some new medication to get his heart rate and blood pressure down. If he settles out, he will stay on c-pap and I am not sure the plan after that. There is still a chance of reintubation if he doesn't continue to well, but I am hopeful he will get through this without that. Please pray for Sam, and I will try to update later tonight. This is our first setback this time, and I am sure we will get through this, it is just hard when you are in the moment. You can never know the comfort it gives us to know we have all of your support and the prayers you send up for Sam. :)

Extubated!!!

We just extubated a few minutes ago, and so far he is doing good. He is still very sleepy and out of it, but he is breathing fine on his own. Hopefully he will be more awake soon, he needs some time for medicine from last night and this morning to wear off. He does look pretty rough...he has big dark circles around his eyes, and is very dry and sunken in (had to keep him very dry so his lungs didnt get wet, but should back off on some diuretics tonight), and he just looks out of it. This should continue to get better with time, also if he does well today without the breathing tube we can probably start feeds tonight which will only give him more energy. They give him nutrition through his iv, but he is definitely needing some good calories.
Thank you for praying for Georgiana, she is stable, but has a long way to go. Last update I heard this morning is her lungs are very wet from all the fluid (medicine, blood, etc) she had to get to keep her other levels up, so breathing is not easy. It will be a balancing act now of getting fluid off her lungs, but keeping her other numbers and pressures up and stable.

Here is a picture of Sam from a few minutes ago.

Here is the sign I made for his bed yesterday while he was sleeping :)

Prayers for Georgiana please!

Please send up prayers for sweet Georgiana! She is one of our dear friends we met during our first trip to Boston last year. She had surgery today and is having a hard time tonight. Please pray for her heart and liver funtion, for her oxygen saturations to go up, and for her blood pressure to stay up. Also remember her mom and dad. Her mom, Angela, is one of the sweetest people I have ever met. I am thankful for our friends and family and my confidence in you all as prayer warriors!

Evening update

Not going to extubate today, planning to try in the morning. Sam should have a quiet night on a new sedation medication while getting some more time to optimize his lungs and wean down on the vent settings. Here are a few pictures of him today.

I am rereading the Francis Chan book, Crazy Love, and although it is a little long, I want to share some of what I read today. It is something that got my attention the first time I read it, but deeply touched me today considering I am sitting in a children’s cardiac icu, and it is definitely something we all could stand to be reminded of…
“It’s easy to think of today as just another day. An average day where you go about life concerned with you ro-do list, preoccupied by appointments, focused on family, thinking about your desires and needs. On the average day, we live caught up in ourselves. On the average day, we don’t consider God very much. On an average day, we forget that our life truly is a vapor. But there is nothing average about today. Just think about everything that must function properly just for you to survive. For example, your kidneys. The only people who really think about their kidneys are people whose kidneys don’t work correctly. The majority of us take for granted our kidneys, liver, lungs, and other internal organs that we’re dependent upon to continue living. What about driving down the road at sixty-five miles an hour, only a few feet away from cars going the opposite direction at the same speed. Someone would only have to jerk his arm and you would be dead. I don’t think that’s morbid, I think it’s reality. “
James writes, “ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes” (4:13-14)
“I used to believe in this world there are two types of people: natural worriers and naturally joyful people. I couldn’t really help it that I was one of the worrying kind. But then there’s that perplexing command: “Rejoice in the Lord always.” Rejoice! You’ll notice it doesn’t end with….unless your doing something extremely important. Maybe life’s pretty good for you right now. God has given you this good stuff so that you can show the world a person who enjoys blessings, but who is still totally obsessed with God. Or maybe life is tough right now, and everything feels like a struggle. God has allowed hard things in your life so you can show the world that your God is great and that knowing Him brings peace and joy, even when life is hard. In the presence of God, He gives us a deeper peace and joy that transcends it all. The point of your life is to point to Him! If life were stable, I’d never need God’s help. Since it’s not, I reach out for Him regularly. I am thankful for the unknowns and that I don’t have control, because it makes me run to God.

Pushing through the hard times...

So we are at the point of Sam's recovery that we always get to, but is always the hardest part. We need to figure out a plan on how to safely and efficiently extubate him. We need to have him awake enough that he is breathing well on his own, but still on his sedation meds and not thrashing around in the bed. He also has to stay on methadone and ativan to prevent withdrawls from all the other narcotics. Finding the right dose of enough to prevent withdrawls, and too much so he's not breathing on his own is proving to be a hard task. We have added a new medication to sedate him, yet it is one he can breathe on, to try to cut back on his methadone and ativan. We will just have to wait and see how this plan works as the day goes on...if we need to try another plan we will. Here is a picture of him yesterday with his new pic line.

That is his pic line in his upper right arm. :)

Success!

They got sam's pic line in their first try! He has been back and resting well. :)

A little traveling today...

They just took Sam downstairs to IR to try for a pic line. Hopefully they can easily get one in his arm using their equipment. He is doing well, and making great progress. After they get the pic, they will wean him off his sedation drips and trasfer him over to only methadone and ativan. He still needs to get some fluid off, but we are hoping by saturday he may be ready for extubation! This will be a huge step in the right direction for us. He has been awake (in a very medicated state) for most of the morning. They did reparalize him to take him downstairs, but that usually wears off pretty quickly. The next couple of days will be rough keeping him between wide awake and thrashing, and too medicated to breathe on his own. I will let you know later if they were successful with the pic. Here are some pictures of him from this morning. They did pull his chest tubes, so he has a big bandage across his chest.

God is Good

We turned off the paralytic around 1 and by 1:40 Sam was trying to flip over in the bed! They eventually got him settled and caught up with him by adding and changing some meds. The best news is that during his thrashing and flopping his LA pressure went to about 22 and came right bak down! This is exactly what we wanted. Dr. Del Nido was very happy, they are pulling his LA line now, and this means his heart and body are tolerating the surgery beautifully
Please pray for Sam's friend Owen. He is an adorable, feisty five year old that had his pacemaker replaced this morning. He is doing well and just needs to rest tonight and not have anymore heart rate issues. Also, remember his mom who is exhausted! They are a sweet family and he reminds me of sam with such a fighting spirit.

Pee, Pee, Pee...

Still working on peeing off fluid. He is peeing well, just needs to keep it up. If he diureses well this morning, they may try to lift the paralytic this afternoon and see what happens. The big issue is that when we lift the paralytic his blood pressure must stay down and his LA pressure (left atrium pressure, this is our biggest number to watch) must also stay below 20. He is sitting around 13-15 on the paralytic, but shoots up when someone touches him or moves him...even while being paralyzed. They have increased his morphine and versed drips in preparation for this afternoon and also started him on some methadone. My suspision is that we will lift the paralytic, his numbers are going to shoot up, reparalyze him and come up with a new plan. I don't mean to be negative, but sedation is always our biggest issue and waking up calm and quietly has never happen with him before. Also, when he is not paralyzed he hates morphine, it makes him itch and very irritable, so finding another medicine that is strong enough to replace the morphine is tricky. I am sure we will try some other drugs to get us through, but this next step of turning off the paralytic and then evetually extubating will be a very hard task to do without causing a big disturbance in his numbers. Usually for extubation we turn off the paralytic and sedation drugs and literally hold him down until he is awake enough to pull the tube (he has also pulled it himself in the past!) That kind of stuff cannot happen after this type of surgery. Please pray for our team of doctors and surgeons to find the right balance of medications and timing to complete all these tasks with ease.
Here are a couple of pictures from late last night and this morning.

Pink little lips :)

Still has some puffy legs!

Today's Pictures :)

New iv in his head (right side of picture)

He's a little puffy, but have now started two diuretics to get some fluid off.
Everything else is the same as yesterday.

Slow and Steady

Sam had a pretty good night last night. Had some issues chasing his blood pressure up and down, but that is typical and usually just a sedation issue. Not much going on today...starting a lasix drip to get him to start peeing off all the fluid volume they have given him, and that's about it. He needs to stay still and quiet for another couple of days. At some point while he is still out of it, they are going to try to get a pic line in him so we will not have the iv issue later. I haven't gotten a picture of him yet today, trying to keep room dark and quiet, but I will try to post one later today.

My little lion

Sam is settled and doing well in the icu. Over the next few days he will stay paralyzed and sedated to allow his heart to settle and to keep his pressures where they need to be. This is not always an easy task, for he is a "lion" as his nurse called him. He has seen so many and much of these medications in the past, it is hard to find the balance of enough and not too much with him. It is always a game of chasing your tail for the first night with him. He looks good, hasn't puffed up yet (he will), and he has pink fingers and toes, and they say that will only get better. His oxygen saturations are 100%!! He has all kinds of lines and tubes, but that is all normal.

Monitor on the left, ventilator on right, behind him and at bottom of bed are pumps running medicine to him.

Chest is closed, stickers on head monitor oxygen to brain, chest tubes drain fluid, blood from chest, tube to drain urine, pacing wires, and central lines.

Not too puffy yet, you will see big change in next day or two, will have a lot of fluid to get rid off.

PINK finger nails! Please excuse the dirt under the pinky :)

Praising His Holy Name!

How Great is our God!!!!  Sam is done with surgery and did great. Dr. del Nido's own words were "we had some very good surprises." They didn't have to replace his aortic valve (ross procedure), there was just a hole in one of the leaflets they were able to repair and his valve is working well now. The rest of the surgery was pretty straight forward and they took down the glenn and norwood (his previous surgeries). He now has four functioning chambers and a normal functioning heart!!! The next 2 or 3 days they will keep him completely out of it, and then slowly wake him up depending on his pressures. Dr. del Nido said he expects him to do very well, we just take things very slowly after this surgery. Will update later tonight :)

Sam's Big Day

They just took Sam back about 30 min ago. It will take them several hours just to get the lines they need in him (iv, central lines, other lines to measure pressures), and then several more hours to get through all the scar tissue to get to his heart. It will be at least 4 or 5 this evening before he is out of surgery. They usually update us about every hour or so, but it is usually just that he is stable and they are still working. I will try to post a quick update to let you know he is done. It's around an hour or so after he's done before we get to see him, they get him up to icu and setteled before we can go in. After we see him for a little while, we usually get some dinner. It will be later tonight before I will get to give a more detailed update about how surgery went.
We had a good evening yesterday. We went to eat at the Cheesecake Factory which was only a block from our hotel, and went to bed early. Here is a pic of Sam at the restaurant.

Here he is waiting to get checked in this morning :)

He was in a really good mood to have to get up at 5am!

Some much needed R&R

After a looooong day yesterday, we are enjoying hotel life today. We were supposed to leave the hospital yesterday morning and have all day yesterday and today to relax, but it didn't quite work out that way. We didn't get to discharge until 5 in the evening (short staffed on drs) and then had to wait over an hour for a cab that was a minivan (all our stuff wouldnt fit in a car!). We finally got settled in our room and Sam went to sleep for the night around 8. I got to sleep in this morning and now Brian and Sam are napping. Not much planned for today, get some dinner later and have an early night. We have to be at the hospital at 6am. Tomorrow will be a very long day followed by a long, hard week I am sure. I am very thankful for this time we have now to rest and relax. We are expecting to have a lot of ups and downs for the first bit after this surgery. It is a huge surgery, and will take Sam's body a good while to adjust to all the changes. Things not only change day by day, but minute to minute in situatuions like this. We just have to rely on the fact that we are in the best children's hospital in the world and even better than that, this is all in God's hands! I will also try to post pics of Sam every day or so, although they will be graphic and hard to look at, it may help you all understand things better and you will eventually be able to see the progress. It is amazing how you can look at a pic of a child laying there with all that stuff and be able to say they look good that day. But if you get to look at him often, you will start to recognize the same things. Here are some recent pics :)

Not good quality, it was dark in the room, but this is when we saw him right after his cath.

Playing Mr. Potato Head :)

Tongue!

Enjoying the comfy, cozy, big hotel bed!

This is what our front porch looks like at home, thanks to Sam's favorite, Whitney (and I'm sure Tanner)!!

Love and miss you all!

Back from Cath Lab

Sam just returned to his room on 8 east from the cath lab. He has had a long day, but has done really well. All of his measurements look good and the plan is for surgery on monday morning. He will have the bi-ventricular repair and the ross procedure (this replaces his aortic valve with his pulmonary valve and a tissue valve is put in place of the pulmonary valve). This is great news and what we have been holding out for! After this surgery Sam will be using all four chambers of his heart!!
The plan for the rest of the night is to keep him quiet and resting, he has to lay flat for another four hours. We will be able to discharge in the morning and return monday morning for surgery. Thanks for the prayers!

Children's Hospital Boston

We had an early start to our day arriving at the hospital at 7am. We had cardiac pre-op clinic which consisted of xray, bloodwork, vitals, ekg, and meeting with several drs including our cardiologist here, Dr. Marx. We finished up with all that aournd noon and headed back to the hotel where we all napped. Then we got a call saying they wanted him to admit to the hospital tonight so they could run iv fluids, some of his blood work numbers were a little high and they wanted to make sure he was good and hydrated so they can get the best pictures possible in cath lab and mri tomorrow. So we are now at our old stomping ground 8 east waiting to get our iv. Hopefully we will be setteled soon and can get some rest, they will take him down around 6:45 in the morning. I will update tomorrow when I can.

We had a package waiting from our heart friend Andrew Hager who left this for us when he was in Boston for his cath last month.

Sam loved the books he got along with a beautiful blanket!

Our cardiologist Dr. Marx went over all of his information while Sam played with his stethoscope. Dr. Marx is one of our favorite people!!

All setteled in his bed watching the Lion King :)