So Proud!

I just had to drop a quick note and say that Sam just fell asleep completely by himself, without a peep! You just don't know how proud we are. Just weeks ago (presurgery) it would take hours of Chris and I walking and rocking Sam to get him to go to sleep. Since surgery, it hasn't taken longer than about 15 minutes for him to put himself sleep once I lay him in bed. And tonight he was totally awake, I laid him down in bed, tucked him in, and walked out....and straight to sleep he went without a single noise. I love him.

The photo is from today. Chris, his mom, and I planted some new flowers and such in our front flower beds. Sam hung out in his bouncer and watched. One of our great neighbors came by and talked for a bit. Their beautiful little girl (who is almost three) apparently prays for Sam every night! AND they told us they are expecting baby number two!! We are super happy about that...Chris is hoping it's a boy so Sam has a playmate!

~Kathy

Doctor's Visit

We had a visit with Sam's cardiologist today. Sam did great this time, and stayed still, quiet, and smiley through the whole thing! Everything looked great! The cardiologist is decreasing the lasix a bit, but the blood pressure medicine stays. In fact, the blood pressure medicine is apparently a forever thing. He also started us on aspirin, which will also be a forever thing. This kind of bothers me. Not that it's difficult to give him medicine. I just hate the thought of putting medicine in his tiny body and him being on any medicine long term. I don't know...I guess whatever keeps him happy and healthy is fine.

Chris's mom is in town so she got to come. The cardiologist was great and spent a lot of time talking to us and filling us in on the plan of action for Sam. He said that even though the surgeon said we would have Sam's next surgery at age 2, the reality is that we will wait as long as we can. He said that could be anywhere between age 2 and 6. That's great news to us! The bigger, the stronger, the better!

He also talked more about long term stuff. Once again there really isn't a lot of long term data for the outcome and side effects of these surgeries. Once Sam has the second surgery and officially has a "Fontan Circulation" system, he will be at risk for side effects involving random organs and other such things. Dr. Cardis said that there is a wide belief that all kids with "Fontan Circulations" end up with heart transplants at some point. Scary. But we knew this coming in. It's why we saved his cord blood. We're placing our bets on some pretty amazing stem cell research (NOT embryonic stem cells...cord blood is stem cells too) and technology to save his life some day...and I have a feeling it will. If we can make it another 20 years before we need a transplant, and current data says we have a good chance of that, then there is no telling what new technology will be available.

All in all, I am slowly starting to feel like Sam's life will be longer than we were originally prepared for by our doctors. And not just long, but full AND meaningful. You will never know just how warm and uplifting that realization has been for us.

~Kathy

Surgeon's Follow-up

We drove to Atlanta today for the follow-up appointment with the surgeon. Sam got chest xrays (which he didn't like), and then got a quick look over by the PA and head nurse. They took off his steristrips and took out his stitches (which he REALLY didn't like). His incision looks soooo clean! There is barely any scab left, and the scar is so thin and smooth feeling. The surgeon came in and looked at Sam. He said he looks fantastic. The surgeon estimates that Sam's next surgery will be somewhere between 18 and 24 months of age. It certainly should not be an 'emergency' situation like this one was, though! Until then, our only instructions from the surgeon was to "treat him like a normal kid!"

We have been kind of impressed with Sam's development over the last two weeks since the surgery. I don't know if it is BECAUSE of the surgery and subsequent higher oxygen levels. Sam is using his hands and arms SOOOO much more. He sleeps a million times better at night...he is getting 8-9 hours at a time now! Actually getting him to bed has become a breeze. After his last bottle, I let him get to the drowsy stage and then just lay him in his bed...he does the rest. He is far more alert, and smiles at everything. He is just a much happier baby all around. Don't get me wrong, he still has his cranky butt moments. But we kind of feel like he is the baby that we always imagined. I don't know if low oxygen pre-surgery had anything to do with it, but it's hard not to blame it on that a little.

The bunny ears are from Easter (clearly). He wasn't too happy with them on his head but I HAD to get a photo of him with bunny ears!!

~Kathy

Check-ups Went Well

Sam had his Cardiologist check up yesterday. He was a little concerned about Sam's weight...not that Sam is underweight, but he was on so many diuretic pills after the surgery that he is all 'dried out'. He hadn't even peed in 12 hours at the time we brought him to the Cardio. He wanted us to push formula feeding with Sam to 'bulk him back up'. UNFORTUNATELY, Sam hates formula. My milk supply died with the stress of the last week, so Sam has been switched cold-turkey to formula. He refuses to drink it. I don't blame him. It's stinky and gross. But the cardio says if he keeps losing water weight they we may have to do IV or NG fluids.

We returned to the cardio today to check Sam's weight. According to their scales, Sam actually lost weight since our visit yesterday. I told the cardio that it's just the nasty formula, and to let us try for a few more days before we have to do IV/NG feeding. Besides, Sam has actually GAINED weight since this whole hospital episode started, and I'm sure that at this point it can't all be fluid from the surgery! Then we went to the pediatrician, who totally agreed with me that Sam's weight isn't a big deal. She let me try giving Sam a 'hypoallergenic' formula, which he ate in its entirety. Must not taste as bad as regular Similac. She was super sweet and gave us a ton of samples of it, since it is super expensive in the store. Hopefully Sam will start eating like normal again. I'm sure his throat is still sore from the intubation, and his stomach is probably all messed up from all the medicine they had him on.

He is growing great though. He is in the 75% for his head circumference, 70% for his height, and 50% for his weight. All in all, Sam is doing wonderful, especially considering what he went through. Chris and I talked about how close we came to losing him. I think there were a ton of different paths and choices that were made the Friday night when all this started, but in all honesty only one of those paths would have led to Sam surviving. Somehow, we made it down that exact path. God is good.

~Kathy

Home!

Sam had a GREAT last two days at the hospital. We finally got his headache pain back under control, and gradually weened off of the supplemental oxygen. His chest tube site finally stopped draining, too. We were discharged today on a handful of medicines, mostly for decreasing the edema that is still in his lungs. With the exception of some stitches and some war wounds, we have our little boy back!

And as an added bonus, Sam learned how to put himself to sleep while we were at the hospital. It used to take us literally hours to get him to go to bed. This was mainly because we couldn't let him cry himself to sleep, since it would cause oxygen deprivation. But all of the sudden he has learned how to just lay down and within a few minutes fall asleep without our assistance. It makes me wonder if he had actually been in some kind of pain all those months before his surgery (headache or otherwise) related to his low oxygen levels. I hope this new skill carries over to the home, and wasn't just something he did while in the hospital. We'll find out tonight!

I can't say enough good things about our neighbors here in Macon. They put together some money and got us some Visa gift cards and left us a sweet note. We used those cards all week to eat and live off of at the hospital...that definitely took some burden off of our wallet! Then when we got home, we had balloons and a sweet welcome home banner for Sam. It's hard being away from our family and friends for all of this, but having neighbors like that makes all of this so much easier. We are blessed in so so so many ways!

~Kathy

Rough Night

Sam had another bad night. He had the headaches all day yesterday and then they continued into the night. He cried almost all day, and the Motrin/Tylenol with Codeine mix just wasn't even touching the pain. Then he kicked his IV out of his foot. The nurse called someone (dont know who) and they said they had to put the IV back in. SO they carted Sam off at 11pm to a 'procedure room' so that their 'expert nurse' could put in the IV. Long story short, Sam now has 3 extra holes in his body, one in his scalp, and NO IV...they couldn't get one to take. So they called that person again, and that person (still dont know who) said forget it, and they changed Sam's IV antibiotic to an oral....which is what they should have done ANYWAY...Ugh. THEN Sam was way upset so we decided to try the sedation again.

As soon as he was knocked out, however, his oxygen sats dropped into the 50s. Chris and I sat there listening to the alarm ring on the monitor...but no one came...and no one came...finally I got up and chased someone down. That nurse ran in, took one look at his oxygen numbers and she ran out. Within seconds the room was full of people (I'm pretty sure she called a code). All it took was to wake Sam up, and his oxygen numbers hit normal again. The sedative just made him breath really shallow. But this meant that until the sedative wore off, Sam's numbers kept dipping and we kept having to wake him up. We did this every 15 minutes ALL NIGHT LONG. Needless to say we are exhausted. We will also NEVER use that sedative again.

I laid into the nurses last night for not coming when his numbers hit 50 the first time. After that, they were in here at every minor ding from our oxygen machine. A nurse manager tried to do some damage control this morning. She let us tell our side of the story and then she apologized. She gave us some coupons for some free coffee. Whoopee.

Sam is fine now though, and actually appears to have less headache pain today. He's been generally happy, and smiling at all the nurses. Maybe we turned the corner with this headache stuff. The doctor wants to keep us until Monday or Tuesday though, just to be sure this fluid continues to come off his lungs and his oxygen continues to stay at acceptable levels.

The photos are of Sam playing with his glow worm/sea horse. We have a lamb stuffed animal that plays white noise, and between it and the glow worm, Sam stays pretty content!

~Kathy

Entertaining Sam

As Sam's headaches are coming on stronger, we are doing are best to help alleviate the pain and make things a little more comfortable for Sam. Here's a video of Sam being mesmerized by his glowing musical seahorse. Kathy and I call it the glow worm. (Only children of the 80's will get that....)



Hopefully his headaches and other pain he may be feeling will pass soon!

~Chris

Blah

That photo is from yesterday, when Sam finally started smiling for us! HOWEVER, Sam's having a not-so-happy day today. Kids who have this Glenn Surgery have really bad headaches for a few weeks because of a change in blood flow/pressure to their heads. Until last night, Sam didn't appear to be having any headaches (or pain, for that matter). HOWEVER last night was rough. We maxed our pain meds out, and then all they could give him was a sedative. That worked and helped him (and us) sleep, but I hate using a sedative. Then this morning he seemed to have a similar spell of headaches/pain. We used all our allowed pain meds, and then the doctor wrote an order for a one time morphine dose. That worked too, but I have concerns over how the rest of the day will go. He also is still receiving IV vancomycin and the IV site is really bothering him.

They said we might be discharged tomorrow, but I don't want to go home if he is still going to have these bad pain and crying episodes. We don't have morphine or sedative at home, so until we can go without it here, I don't want to leave. Other than that, and a little drainage out of one of the chest tube sites, Sam looks great and is medically very stable. He is down to .5L oxygen and should be on room air by tonight.

Keep the prayers coming for Sam, but please say a prayer for Chris's cousin who has found out that his colon cancer spread to his lung. Also say a prayer for my best friends sister, who just delivered her first baby girl at 24 weeks...the baby is just barely over 1 pound and is 9 inches long.

~Kathy

More Alert

We had a bad night last night. Not because of Sam. Sam did great. His nursing team however, was not up to par. They interrupted our sleep at least once an hour...and they hardly even check on us during the day light!! ugh. Sam is doing great though. They had to go back up on his oxygen because he is still so full of fluid in his lungs. But that is our only problem. He is looking less puffy, and is much more alert. He refuses to smile for us, but he also rarely cries or even makes a peep. Clearly he hurts but it must not be that bad! He does enjoy looking at us with the most pathetic of faces, as if to say "look what YOU did to me"...refer to the photos above!

Chris and I let my parents babysit while we went out for lunch. We also stopped by a grocery store and bought some food/laundry detergent donations for the Ronald McDonald House. They took such good care of us, and we wanted to pay it forward. While we were out, the surgeon came to peek in on Sam...naturally. He told my parents that everything looks great except for the continued fluid retention but that he isn't worried about it. He said we are looking at being d/c'd this weekend!

~Kathy

Step Down Unit

Sam is now in the 'step down' unit. They have pulled his chest tubes and drains, and the arterial line in his neck is now out. He only has one IV line left, and they are using that for his antibiotic. They have dropped him down to one liter of supplemental oxygen through a nasal cannula, and they are actively working to ween him completely off the oxygen by the time we go home. He is still swollen, and his lungs still sound very 'wet'...that is all very normal after this surgery. They are using a combination of lasix and a similar med to 'dry him out'. But everyone just keeps telling us how wonderful he is doing for a 'Glenn' surgery baby, and for how bad off he was when he came in!

Photos are from our new room. We finally got to hold him. Chris made a YouTube video of the room...

He is still pretty cranky and sleepy...but I guess we won't hold it against him!

~Kathy