Sweet Baby Sam

Off the Vent

Sam is now off the vent! They pulled that out around 6am. They have also taken out his 'heart line' (like an IV into the heart), his NG tube, and some of his oxygenation monitors. We tried to get him to eat but he is still a little out of it. He has a really congested sounding breath, so they are doing some Chest PT to help him get it out. He is semi-awake at times, and then he'll be right back asleep. His nurse said that so far he is the easiest "Glenn" patient to work with...no signs of pain or headaches and he hasn't really been crying too much. His vital signs are very stable with minimal medication. He is still a little swollen but it is coming down with the lasix treatments. His chest tube drainage is minimal and those tubes may come out in the next 24-36 hours. We are so proud of his progress.

I took some great photos with our new camera. I will post them when I get a little more time. In case you are wondering, this hospital is AMAZING. They are truly miracle workers, and they are so kind and personable. Usually you are miserable in a hospital, but they have made it so easy for us.

~Kathy

Looking Great!!

I just checked on Sam. He looks GREAT! He is off the pacemaker, and his drainage is minimal. They started the Lasix to bring down the swelling and that is working great. He is still knocked out from the anesthesia today, but his nurse said he should wake up sometime tomorrow. When he gets closer to waking up, they will take out his NG tube, the vent, and an IV line that is currently directly in his heart. They have his arms restrained because they don't want him pulling out tubes once he wakes up. He will get to eat tomorrow but he'll have to wait 6 hours after the tubes come out. They said he'll be agitated (clearly) and hungry and he'll have a killer headache. They will keep him comfortable with pain meds for a few days. We should be out of the CICU and on the regular floor by Thursday!

Let's not get ahead of ourselves...for now he is doing great, and that's all that matters. Prayers are working!!!

~Kathy

Recovering

We got to see Sam in the CICU about an hour after his surgery was complete. He has chest tubes to drain off fluid, and an external pacemaker to keep his heart at a good rhythm until he recovers more. He is still on the vent, but they have been able to ween him down off of it a bit. He is holding his pressures and oxygen at wonderful levels, and is no longer on the heavy pressure medication that kept him alive over the last two days. For the first time in his life, he is truly 'pink' and his hands and feet are so warm thanks to the better blood oxygenation levels! He is swollen from the surgery, but they will start the meds to decrease that soon. They may take him off the vent tonight and wake him a little. Chris and I are going to try to catch a little sleep now, because once he wakes up, we won't leave his bedside.

The photos are kind of scary...but all of those horrible tubes and wires saved his life.

~Kathy

Out of Surgery!

Sam is out of surgery! We just spoke with the surgeon who said everything went as well as could be hoped for. He explained some of the details of the operation and said he thinks everything looks great. We won't get to see him for about another hour because they have to get him settled back into the CICU. We can't thank everyone enough for the prayers and positive thoughts! We felt your support and we know it made all the difference! THANK YOU!!

~Kathy

Update

The nurse in the OR just called. They were able to do the Glenn repair (the surgery that was scheduled for the 15 of April). They are about to take him off the Heart/Lung bypass, and will be done with everything in about an hour. So far so good. We'll update after we talk to the doctor!

~Kathy

Officially In Surgery

Sam is in surgery. They took him back at 730am. We got to follow them to the OR. All of the doctors, nurses, and surgeons are super nice. They will update us about every hour, and then when the surgeon is done (around 11-12), he will come out and talk to us. I'll update when I know anything.

Photos are from just before they brought Sam back to the OR.

~Kathy

Surgery TOMORROW

Sam is still stable. He's not quite as puffy looking, but he has developed a bit of a runny nose. They tested it and he has the beginning of an upper respiratory infection. They are going to start him on some antibiotics, which they were going to do anyway (they do this for all kids the day before surgery). No matter what, they are definitely doing surgery tomorrow AM.

We are supposed to be here by 6am to speak with the surgeon. They will bring him to the OR at 7am and will be cutting by 730. It only takes about 3 hours, and then he will be back in the CICU. It's way too complicated to explain, but with his type of surgery they HAVE to get him off the vent ASAP after surgery, so they will 'wake' him tomorrow...he'll still be pretty heavily drugged up by pain meds. His surgery will take care of this 'tet spell' that sent us here, AND will be the surgery we scheduled for April. We are nervous but happy that this stage will be over soon.

Chris and my dad drove back to Macon for a few hours to pick up some clothes and rescue our dog. He was being taken care of by our great neighbors but they had a trip planned so Relo gets to visit Atlanta for a few days! He'll be staying at the hotel with my parents...I'm sure he isn't too happy about that, and would rather be at our neighbors. Chris's parents are on their way now.

We are headed to church and then to eat. We'll be back to spend some time with Sam tonight before his big day. Pictures are on their way! We FINALLY got our Nikon D60 that we ordered (Chris picked it up while he was in Macon). We had really wanted it way before now...we ordered it over a month ago!!! Dang HH Gregg...

All is well...will update tomorrow after we get Sam in the OR!!

~Kathy

Still Stable

I just checked on Sam via phone. He is still stable and they are still successfully weening him off of all of the meds they pumped him full of last night. Still on the vent, still sedated. They are going to do the Glenn surgery (the one we originally had scheduled for April) as well as a procedure to fix this 'Tet Spell' that he had yesterday all in one shebang on Monday or Tuesday at the latest. They said he will have preference in the OR...they will bump all the scheduled surgeries back so that he can have his surgery whenever the surgeon is ready. Hopefully we will get more details on that tomorrow.

In the mean time, Chris and I (who haven't slept since Thursday night) are going to bed. The hospital set us up with a room at the Ronald McDonald house up here. It is brand spankin new and BEAUTIFUL! They are all super nice here and very accommodating. We are well taken care of. We are also being taken care of by our fabulous neighbors back in Macon. They are watching our house and the dog, and have offered tons and tons of support. We will never be able to find the words to thank them enough.

And thank EVERYONE for the prayers...Sam is thriving thanks to them and God. Will update in the morning!

~Kathy

This Kid is RARE

We had the worst night of our lives last night. After they hooked Sam up to the vent, his oxygen levels continued to drop. They gave him medicine after medicine after medicine, and nothing would bring his oxygen up. On top of that, his blood pressure dropped extremely low and they also couldn't bring it back up. Our cardiologist came out to give us the bad news. He told us they were doing everything they could to get him transported to Atlanta, but that they couldn't transport him unless he was stable. He was very honest, and told us that Sam only had a 50/50 chance of surviving long enough to make it to Atlanta.

I died inside. We had about an hour of absolute despair. The cardiologist returned, though, and said that they finally figured out a good combination of meds to keep him stable enough for transport. They wanted to fly him via helicopter but the weather was too bad, so we had to wait for the ambulance from Atlanta (it's like a mobile cardiac ICU). Chris drove on to the hospital and I rode the ambulance with Sam. We got to Egleston Hospital around 800am and they started working on him immediately to figure out what was causing this sudden bottoming out of his oxygen levels.

We just got back from visiting Sam in the CICU. The good news is they know what happened to him last night! He had a 'Tet Spell'...something that usually happens to a whole other group of heart defect patients and RARELY occurs with Sam's defect. It's so rare for Tricuspid Atresia patients, that our cardiologist in Macon didn't even know to look for it (and he is a GREAT cardiologist). Sam apparently has a little extra muscle tissue around the pulmonary valve. Last night, it spasmed, and closed the artery which blocked blood flow to Sam's lungs. They have stabilized him WITHOUT needing to put him on the lung bypass machine, and he may possibly need surgery in the next day or so to cut out the extra tissue so that this doesn't happen again.

The true miracle of this, however, is that this spasm occurred BY CHANCE at the same time we were already at the hospital. It could have just as easily happened in the middle of the night while we were all sleeping. It is also pretty random that we were in the hospital at all...I had just called the cardio to confirm an appointment, not to necessarily complain about Sam's oxygen levels! It also just so happened that one of the best cardiologists at Egleston was on call last night, and between him and our cardio in Macon, they figured out the right combination of drugs and worked together to clear a room for Sam in Atlanta.

For now, Sam is stable. He is still on the vent and sedated, and he will likely remain that way as long as there is potential for surgery. We will know later tonight whether we need that extra surgery to cut out the spasming tissue. I will update as I can. Keep the prayers coming...they are working!

~Kathy

Total Shock

We are currently waiting in the family waiting area at the Children's Hospital in Macon, GA, waiting for Sam to be intubated and stabilized so we can bring him to Atlanta.

Sam has been breathing heavier and looking bluer over the last few days. I called the cardiologist just to confirm the date of our next appointment and they asked how he was. When I told them, they got really nervous and sent us to the hospital to evaluate the need for home oxygen supplementation. To make a long, painful story short, the oxygen didn't work and Sam's blood oxygen levels continued to be low and even drop some. They wanted to transfer him to Atlanta right away but they thought he was too unstable.

They are currently intubating him and giving him medicine to bring his blood pH back to normal. Once he is stable, he will go straight to the cardiac ICU in Atlanta's Egleston Hospital. Our cardiologist believes we will likely be headed to surgery as soon as they can get us in. He thinks something has changed since last week's heart cath. Maybe one of the holes in Sam's heart got smaller, maybe the lung pressures changed...they don't know. All they know is he is better off in Atlanta. And after the way we have been treated tonight, I TOTALLY AGREE (but that is a story for another post).

Anyway, we will do our best to update this blog and our facebook pages as we can. Please pray for Sam.

~Kathy

Cath Recovery and Surgery News

Sam had his heart cath today. We stayed in Atlanta Thursday night since we had to be at the hospital at 630am. The hospital is just 2 years old and is BEAUTIFUL. All of the nurses and doctors were fabulous too! They gave Sam his sedation medicine at 7am and he was sound asleep and in the procedure at 730. They only had to go in one leg and it took less time than expected. They brought him back to us in the recovery room and they did an echo while he was sleeping so that they were sure they had all the photos they needed for surgery.

The cath doctor came in and told us they got beautiful photos of Sam's heart and lungs. He said the lung pressures are perfect and Sam's pulmonary arteries look wonderful. He called the surgical nurse to let her know we were ready to be set up for surgery. The nurse came up and gave us the first available date, which is April 15. Luckily for us, the surgeon just happened to be hanging around the hospital doing paper work, so she called him up to talk to us.

The surgeon was super nice and explained how Sam's surgery would go. The surgery is called the bi-directional Glenn. He said we would come up the day before surgery for several hours of pre-op stuff. He explained what would happen with the surgery, which is too indepth to type...call me if you want details. The important thing to know is that the whole surgery will take about 3 hours, not including prep and closure. He said Sam will be in the CICU for a day or two until they can ween him off the vent. Sam will then spend the rest of a week in the pediatric cardiac step down unit. The surgeon said most babies go home within a week of surgery, and can return to normal activities within two weeks. He will be on minimal medication after surgery that will be weened within a month or so after. There are always chances of infection and complications that will keep us in the hospital longer but the surgeon seemed so relaxed and nonchalant about the whole thing. You would have thought he was just talking about pulling teeth, not open heart surgery. Of course, he does this surgery weekly so I guess it's not such a big deal to him!

They discharged us from the cardiac outpatient unit after Sam drank a bottle, but he never really woke all the way up. In fact, he STILL hasn't woken all the way up and its almost 11pm. He is really cranky at times but never opens his eyes. It's been hard to get him to eat anything because he is still so asleep. I called the hospital in Atlanta and the doctor said to give it the rest of 24 hours and see how he is. She said Sam had a 'big day' and it may take a bit for him to fully recover. That's fine...I just wish they had told us before we left he might be like this.

But all in all, we really had a great day with great staff at a great hospital. We feel really positive about the results of today and about Sam's upcoming surgery. We're just ready to put this surgery behind us! I'll update on how Sam is recovering tomorrow. THANKS THANKS THANKS to everyone for all of the prayers and support! All of the doctors and nurses we encounter always mention how lucky Sam has been with his health and with the outcomes related to his defects thus far...we know it's not luck though...prayer works!

The first photo is Sam before the cath. He was flirting with the nurse. The second one is Sam after that cath, still sleeping from the meds.

~Kathy

Heart Cath Scheduled

The Sibley Heart Center at Egleston Hospital in Atlanta called today and we set up Sam's heart cath for Friday, March 20. They will call us with instructions for the cath the day before. I think I'm far more nervous about how to keep a little baby from eating for hours and hours before the procedure than I am about the procedure itself. The hospital does 8000 heart caths on babies every year. We're in good hands.

This past Sunday morning, Sam was fussy and was (for the first time) notably blue all over...arms, legs, belly, face...everything. We checked his O2 and it was where it usually is, between 68-76. I think I am more aware of his color now that he is in day care and I can compare him to other babies. It's a little scary to see him so blue but at the same time he is eating fine, smiling, and showing no other signs of heart failure so we are good for now. Besides, we will be in surgery in just a few short weeks and when it is all said and done, he'll be just as pink as his buddies at 'school' and will have a much more normal O2 number. We can stick it out.

~Kathy

3 Month B-day and Cardio Visit

Sam turned three months old today! Seems like it was only yesterday he was born, and at the same time it seems like forever ago.

We had our cardiologist appointment today to start the process of preparing for Sam's first open heart surgery. Sam weighed in at 12lbs 13oz and was 25 inches long. They did an EKG and an echocardiogram. Sam was almost perfect for the whole thing; he only really got fussy once but he took a pacifier (which is a rare event) and fell asleep for the rest of the visit. And yet again, the pulse-ox meter read fairly low...the highest was 79 but the lowest was in the 50s. I think the doctor is still secretly worried about these weird low numbers, but since Sam looks fairly pink with only slightly blue/purple lips at worst the doctor doesn't make too big of a deal over the numbers.

Dr. Cardis said our EKG and echo looked just about the same as our results in January, which is good news. He was concerned that the hole between the ventricles may be closing but after a second look on a second echo he decided it looked fine. (Remember, we NEED the hole in the heart where as most people don't.) He is going to send the results up to Atlanta tomorrow, and then they will call us by the end of next week to set up a heart cath.

He explained that the heart cath is to be sure that the pressures in the pulmonary arteries are at the right level for surgery. If they aren't then we will have to put Sam on some meds and repeat the cath. Dr. Cardis doesn't think this will be a problem for us though. He said once the cath results are in, all of the surgeons and all of the cardiologist in Atlanta sit down in a conference and review them on a big screen. They decide as a group what to do. Then they let us know. Dr. Cardis said Sam seems like a good candidate for surgery in his opinion....I told him that was a dang good thing, considering there are NO other options.

In review, Sam's EKG and echo went well and looked fine. We will schedule the cath in a few weeks, and wait for the results and the doctors decisions. Wait, wait, wait....we're used to that now. But we will enjoy everyday with our little man!

~Kathy

Sam's First Snow

It was supposed to snow yesterday in Macon. So naturally, yesterday it was about 70 degrees and sunny. But TODAY it snowed several inches! I waited for it to slow down a bit so I could get some photos with Sam. The SECOND we walked out the door he started screaming. I had him bundled good but I guess it was still too much for him. I only got one shot off before I felt too guilty to continue.

I also included a couple of baptism/recent photos, as promised!

~Kathy