September 1997

September 1 PM: I am so tired. Many priorities in life, such as sleep, eating a full meal in a leisurely manner, talking in an adult voice in the house, and talking to neighbors about anything other than diapers, baby poop, and 'binkeys', have all been forgotten. I think there is a woman that lives in Tyler's and my house, but we're not sure. Every once in a while, things have been moved in the refrigerator, and the sink is clean. It's hard to say though ;-)

I am happily trading all of those silly priorities for the time we have with him. He brings such joy to our household. We are gearing up for the surgery this week. We have now switched him completely over to a VERY hypo-allergenic formula (cost $1,000,000 per can, or something close to that). This is to completely cure the 'blood in his stool' problem before the operation. I think this stuff is more vile than the last stuff, poor guy. Guess what though; he hates it, but he just sits back and eats it with a smile anyway. What a trooper. Donna is bingeing on milk products, we had pizza, ice cream and all the other things she has been missing for the last few weeks.

I'm happy to report that all members of the blood team have donated. We will have enough blood for his operation. I sincerely want to thank everyone who has volunteered. I never expected that sort of response. For those who we did not use for this operation, please keep your blood ready for his next one.

We are having a quiet week at home before the operation. All grandparents are in town, immediate family members are near, and friends are queued for the big day. Tyler is doing very well. He's eating well and getting lots of sleep. He seems so happy now, it's a bit of a shame we have to do this, but it is so worth it. This is the first time we have taken him to the hospital when he has been well. It will be strange to hand over a healthy baby to the doctors. We have so much trust and faith in the people at Children's Hospital though, it won't be too hard...

Tomorrow we take him in at 9:00 AM for the preliminary work. They will plug him into an EKG, take a couple chest X-Rays, check out his blood, and generally make sure he is ready. We will have him at home again tomorrow night, then it begins..

Grandpa just brought him in after another good nap, so I'm going to go play!!!

September 3 PM: Yeah and Sigh... So far so good. Tyler was in the operating room from 6:50 until about 1:00. He has made it through the toughest portion of this entire ordeal. We are both relieved, and guarded. Tyler has certainly been able to throw curve balls at us during the recovery stages of each procedure, so we will wait. At this time, the only problem is his oxygen saturation levels. These are down to uncomfortable, but not bad levels. We're not sure of the reason for this yet, but he has already improved very well during the course of the day. His chest has been left open again (like the first operation) while they watch this. Everything else looks great right now. They expect a rather calm night tonight. We both wished for a perfect report card, but I guess parents will always wish for that!

We are both rather exhausted right now, even though it's only 9:30. We had to get up at 4:00 this morning to get him, and us, ready. It was a VERY strange thing to watch them carry him down for the operation. We had been sitting with him in a recovery room while they took his blood pressure and temperature. We dressed him in one of those very easy-to-use hospital gowns. He was full of smiles and curiosity while staring around the room. Six hours later, we saw him in the same sort of shape he was after his first operation (see his first page for pictures until I get these scanned). He has three chest tubes, a full chest dressing, four IV/arterial lines, a ventilator, two saturation meters, and the full range of monitors and beeping things (I know you love it when I get so technical ;-). The pediatric ICU area is very nice, and so far everyone we have met has been wonderful!.

Speaking of wonderful, there were several people there supporting us today - including Beth (our friend from the days in NICU). She came in on her day off to give us a big hug. It was so nice to see her again. Four of the five 'blood team' members were there as well.

We're already looking forward to seeing him tomorrow. He is still very much under sedation, but his color and general appearance are good. Everyone has said that his prognosis is very good... Good night, and thanks for all the good wishes - it looks like they have helped!!!!!

Sept 7 AM: It's been a hectic few days, just as anyone would expect. Tyler has managed to throw minor curves at us during his recovery, but he continues to do well. His chest was closed on Thursday afternoon, that went quite well. His blood saturation (SATs) had finally begun to climb on that morning. He was down to 55% oxygen on his ventilator and his SATs hung in there at about 70%. He was still very unconscious, as he should be. Once the chest was closed, it was time to start talking about waking him up, and seeing if it was time to extubate (remove the ventilator). They made the decision to extubate on Friday afternoon. For the first time, Tyler made it through an extubation without needing to be re-intubated!! We were so proud ;-). They put an oxygen mask over his face to continue his 50% O2 level.

As a result of the chest closure, and perhaps other factors, his pulse and blood pressure began to climb to uncomfortable levels. He had always had a high blood pressure, but this was worse. His pulse was up at 160 occasionally. At about 4:00 AM on Saturday morning, he made a good turn around. Finally his pulse and blood pressure dropped to more reasonable levels. They put him on a nasal cannula so we can get at his mouth. It was now time to try clear liquids. He looked like a little bird, pursing his mouth to accept the bottle. He was starving. It was nice to see him acting a bit more normal. We were actually able to hold him a little as well. It was a little awkward due to the chest tubes, cathoder, and IV's that were still in him, but well worth it. We cannot get him to smile yet though.... I don't blame the little guy. We have begun to move in some of the 'stuff' he is familiar with - his favorite mobile, a few key stuffed animals, and a CD player with his favorite songs (well at least ones he has heard around our house before ;-).

True to form, he now has come up with another item for us to worry about. This is not really new for him, but sometimes he drops to a very low pulse when he sleeps. If you remember back to his Balloon Angioplasty, he experienced Bradycardia. He managed to get down to a 78 pulse last night. Perhaps he thinks he is an adult with his 120 systolic blood pressure and a pulse in the 70's. We would like to remind him that as a baby, these numbers should be almost reversed... He can have high blood pressure later when he gets a job and a mortgage...

Well, off we go back to the hospital. We will be feeding him his favorite hypoalergenic formula today! He has been very alert when he is awake, but obviously in a little pain. He gets a sedative shot every 2 to 4 hours to help with that. He should have one of the chest tubes pulled today. We'll see how that goes...

Sept 12 PM: Break Out The Champagne. Tyler is home! Sorry about the delay on this update, we have been staying at the hospital during his recovery and they don't have very good internet access ;-). Let me see if I can remember some of the details..

Sunday was the first day Donna spent the night. Tyler was more awake and really needed the comfort of his mom. Tyler had been 'downgraded' to Critical Care, and out of the Intensive Care ward! This was good news, as they felt he was doing much better. Unfortunately, as the new kid on the block, he was placed in a double room. Needless to say, Donna did not get a whole lot of sleep. His night went fairly well, but they noticed an extra bit of drainage from one of his chest tubes. They thought it was Chilo-Thorax, a lymphatic system reaction to the surgery. They placed him on yet another, even more vile, hypo-allergenic formula liquid. He decided to stop eating. On Monday after smelling the odor of the formula and hearing Tyler scream as we were trying to feed him, Dr. Mainwaring took him off this stuff. Apparently the drainage was not a problem. We were happy, but Tyler seemed to remember how much he hated to eat. Dr. Mainwaring also removed the first of the three chest tubes. It was nice to see Tyler start to get 'unplugged.'

Tuesday, Tyler's seniority in the ward was exercised, and we moved to a nicer private room. This was the first night I spent there (much to Donna's exasperation ;-). Tyler was a gem that night. He slept 4 hours at a time, even though he had still not been eating very well. I had managed to force a couple ounces before bedtime, but was surprised to see how long that lasted. They removed another chest tube. We had begun to bring Tyler's medications back up to home dosages as well. This meant we could remove most of the IV lines! Tyler was happy to see those go...

Finally Wednesday, they removed the last chest tube. I had never seen such a great attitude change in anyone. He began to smile again. That was wonderful, especially since he had been so grumpy all week. You could tell he was still not feeling 100%, but had at least he was more comfortable. Dr. Mainwaring floored me when he said Tyler "might go home tomorrow"! We just had to have some other staff approve his homecoming as well. He had continued to have a low saturation level, as well has a low heart rate, while he was asleep, but they were not worried about that too much. He was also eating a little better, but not great.

Thursday was the day! Overnight, I had managed to get him to eat almost 3 oz twice! His morning chest X-ray showed a little 'haziness' (still a little wet), but not enough to keep him in the hospital. After consulting with both us and amongst themselves, Tyler was released! We were warned not to be too disappointed if we had to bring him back, but he would probably be much happier at home and might recover better.

Tyler had survived the worst section of his heart repair.

He continues to be happier each hour he his home. Last night, he started his talking thing (where he makes sounds that he is certain we understand). That was the first time we had seen that since the operation. You could just tell he was happy to be back home!!! He slept 5 hours straight, ate 3 oz in 10 minutes, then slept another couple hours. I cannot believe how much we missed him at home during the last week.

We can not begin to thank the people who have done so much for Tyler. All the doctors, nurses, and medical staff, as well as the countless hours of prayer and positive thoughts from our friends and family. The reward is the little guy I left sleeping with his mom this morning, happy to finally be home...

Sept 15 PM: We just got back from perhaps our last appointment with our Cardiac Surgeon, at least until the last surgery in about a year. It's a very strange feeling thinking we won't be seeing him for a while. He has been such an important part of our lives lately. Tyler had the last of his stitches removed today. There are a few bandages left on his chest that we will remove later this week, then that's it... We will continue to visit the Cardiologist (Dr. Cocalis) regularly, as well as the Pediatrician (Dr. Battey), so we won't miss our frequent office visits! His chest X-ray continues to look better, so they are very happy with his progress. His o2 saturation is still a bit low, but improving as well.

Tyler is slowly but surely beginning to re-discover food. Each day he takes a little more. I think Saturday night was the worst we had ever seen. He realized he was starving, but would only eat enough to last about an hour and a half. He woke us up continually all night. At least last night he would let us sleep about 3 hours at a time. We'll see how he is tonight.

I wonder when we will really be able to relax about him...

Sept 21 AM: Here I am in Ohio again! Let's hope this trip is not cut short like the last time.. We both feel quite a bit more comfortable with his situation, so were not worried about me being gone. Perhaps I should say I am not too worried about me being gone, Donna is running as 'primary care' for him for the next three days. She will have her hands full.

He is finally eating enough that we really don't need to worry about his appetite as much any more. Unfortunately, it's not enough to carry him all through the night. He still runs about 2 to three hours between feedings. She doesn't really have much of a chance for a good nights sleep while I'm gone. I was very surprised to see he was willing to be without one of his rattles this week, I found it in my suitcase with a note "I love you daddy." What a nice surprise. Thanks mom...

I had two days of Mr. Mom this past week! Donna started back to work, and we don't really feel comfortable leaving him with other people for day care yet (I wonder why ;-). He was an angel the first day, but a bit of a pill the next. As good parents, we have been stressed about his grumpy mood, but a quick visit with his cardiologist (Dr. Cocalis) calmed our nerves. His blood saturation level is still low, and his lungs are still 'wet', but he passed all other tests. They expect his mood will improve steadily. He is starting to 'talk' again, as well as crane his neck when he sees the bottle coming. It's always nice to see his old ways returning.

We finally managed to give him his first shower after his surgery yesterday. Boy did he need that!!! We removed the last of his dressings as well. Most of the surgery sites are healing very well. His 'manly' chest should be back in no time...

Sept 30 AM: It's great to be back home, but even better it's great to see things at our home begin to stabilize. He still is not eating very well, but he did give us 5 hours straight last night! He is gaining weight as well. Otherwise, we're all getting into a nice routine as we learn about each other.

A few milestones during the last few days: Tyler put his foot into the Pacific Ocean for the first time this weekend. He was fascinated by all the noises and smells at the beach. We had to keep him very covered since he is such a fair skinned guy, but there was a nice breeze to keep him cool. It was a short visit to the beach, but a nice one.

Grandma and Grandpa came down from Sequoia (actually Kings Canyon) to visit over the weekend as well. This is the first time they had seen him since his last hospital visit. They even baby-sat for a few hours so momma and I could go out to a nice dinner! Grandma spoiled him with a trip to the baby-clothes store ;-)

We've also started the process of solid foods, if that is really what you want to call the rice mush we are trying to pawn off on him ;-) Once in a while, he seems to like it, otherwise he just does not recognize it as satisfying food. We'll keep working on that, we hope solids will help him sleep through the night sooner.

We have another Cardiologist appointment today. We'll have an echo cardiogram done this time. We're hoping that his SATs are finally up to a level that we can consider taking him to elevation. We'd love to be able to have Christmas in Sequoia this year! I trust the doctors to make a good decision on this with us...

He's already learned to recite the Gettysburg Address, as well as computer programming with his dad. Next week we'll work on the lawn mowing and baseball ;-) (just wanted to see if you were awake reading this ;-). We are VERY proud of our little friend though. He smiles just like he used to, and loves to talk. He is still a very social guy, not wanting to miss anything around him. All good news lately!!!