August 1998

It certainly has been an eventful few months. Tyler has continued to thrive. We managed to get his weight up to almost 22 pounds. He has also discovered walking. This is quickly becoming his preferred mode of transportation. He will still crash occasionally, but boys look better with a bruise or two ;-) He has decided that baby food is no longer acceptable, and is asserting himself in many ways. For example, if you but him in his high chair with food on his plate, he will just yell at you until he gets his sipper cup. It's almost as if he is saying "Don't you realize I am thirsty? I can't eat until I have my juice."

He is still sleeping through the night very well. He is also a major flirt. He will stare at someone with his biggest smile until they look at him. If they continue to ignore him, he will give his best yell until they do. This is especially fun at restaurants. He will not let our waitress leave until she gives him a little attention.

Looking at the last few months quickly:

June 17 1998: Diagnostic Catheterization. This was to take a good look at Tyler's heart function to see what may need to be done. Dr Cocalis came out from the lab and said "I have good news and bad news. Which do you want first?" I already assumed the good news was Tyler was fine, so I asked for the bad news. It was that we had to go in at least two more times (other than his third stage). One would be another catheterization to install a stent in his Pulmonary Artery. This surgery would have to be done before the next operation so his body would be able to accept the more blood flow to his lungs. The other procedure would be to repair the coarctation. Dr. Lamberti (Cardiac Surgeon) came into to the lab during the cath to take a look and decided he did not want to attempt a coarctation repair at the same time as the Fontan operation. There was too much risk.

A stent is a wire coil designed to enlarge a blood vessel semi-permanently. His right pulmonary artery was not large enough to accept the new blood flow of a Fontan operation. During this procedure, he was also 'coiled.' This is a procedure to block off collateral arteries that he has grown to compensate for his new blood flows. These add an extra strain to his heart, and are not very helpful in the long run. We noticed our little pink boy had taken a slightly blueish tint after these were installed.

We did manage to get him to the Del Mar Fair this month! Tyler loved it. There were so many animals and people for him to see. He was not fully confident when he was taken into the petting zoo and placed right next to a live goat, but he did very well. We even tried him on a Merry-Go-Round, but that was a little less successful. He didn't seem to mind until the thing started moving. Then he was not nearly as happy ;-).

July 15 1998: Another stay at the hospital. This was the day to have Tyler's stent(s) added and his coarctation evaluated. It turned out while he was in the cath lab they more aggressively ballooned his coarctation. For the time being, they would not have to operate to correct that!! We were very happy. They did mention that with the stents (there turned out to be two installed) and the coils, he has enough metal in his body to set off an airport detector. Not really, but it is an entertaining thought.

Tyler also started walking much better this month. Instead of his taking five steps and diving into one of us so we would catch him, he discovered he could stop, turn and head any direction he wanted. Often, as he was approaching a couch or something soft, he would still dive. For balance, both his arms would be above his head. It was most fun to see!!

August 1998: It was time to bring Tyler's Blood Donation Team back into service. Most of the original team was still available, but we did have two new entries. Thanks so much to the team. There is not way to thank these people for the kind of support they have shown. It's incredible for us (and Tyler) to have friends like this.

His surgery was scheduled for August 20th, but it turned out an operation on the 19th was running a bit long. They asked if we would mind being bumped until Saturday the 22nd. We accepted, and were able to spend a couple extra days playing with the little guy. Grandma and Grandpa had already come down from the mountains and loved the extra time.

August 22 1998: Tyler underwent a lateral-tunnel Fontan operation with a fenestration. One excellent site on the Internet to find out more about this is Left Heart Matters. Check under the support button and online booklet for details of each operation. It was a 6 hour surgery ending around 2:00 PM. Dr Lamberti (the surgeon) came out and said this had been a routine Fontan. It was a wonderful relief for us to have this latest surgery over. Tyler should not have to have any further surgery for some time now. He would probably need another balloon dilation of his coarctation some time in the next year, but that would probably be it...

Then it happened:

Sunday morning, as we were walking into see him, a doctor came out and told us "Tyler had a good night, but he is having a 'dip' right now." We were told to go to the waiting room and stay for a little while. Tyler had experienced a series of seizures and they were trying to both stop them and figure out why. He was strongly medicated in an effort to stop them, but they continued for a while. They were mild seizures, at least, but they were there.

We spent the whole day watching him and waiting for an answer.

Monday August 24: He would not wake up even though they had stopped the sedative. Some people felt he was still snowed under due to the seizure medicine, others felt he just was not able to metabolize the sedatives from the surgery. Either way, he was not looking like our baby. His eyes were distant when they were pulled open to check. His left arm was limp. At this point, he was still on the ventilator. We had hoped he would be taken off this on the day of the surgery, not so. He had a little bit of an effusion, and arrhythmia. He was placed on an external pacemaker for the time being. We still had high hopes the fact he was not waking up was due to the medication. Only time would tell.

Tuesday August 25: Still not much of a change. He would open his eyes about 1/3 of the way, but there was no one in there. He began a tongue thrusting activity while he was awake. Donna and I had never seen this with him before. His left arm was still limp, but he was starting to move his right arm a little. He was not able to track movement with his eyes, all they would do is look straight forward. This was not our Tyler.

This was the first night one of us really needed to stay at the hospital. Tyler was finally starting to wake a little, so we wanted to be there. Donna took the first night so I was at home. At 5:30 am on Wed. Donna called with a pit in her stomach and asked if I would come down to be with her. The blank look on his face had finally taken it's toll on both of us. We were beginning to be very scared. I was there at the hospital within an hour.

Wednesday August 26: It's hard to believe that there could be a day in our lives that was worse than the day they told us Tyler had a Hypoplastic left heart. This was awfully close. The CAT Scan this morning showed there has been damage to his brain. This is causing the seizures. The area has been referred to as "watershed damage." It's similar to the way sprinklers work on a lawn. The ones furthest from the valve get the least amount of water if there is a shortage. It looks as if Tyler experienced a shortage of blood in his brain for some period of time.

No one is able to determine what kind of damage this may be. Neurological insults were almost impossible to predict. In Tyler's case, the damage seems to be greater on the right side of his brain. They described them as "areas of low density." The areas showed an edema, so they began treating him with a series of very strong diuretics that worked mostly in the brain. Their hopes were to eliminated any pressure the edema may be causing.

He was still only able to open his eyes for a few minutes at a time. His tongue thrusting was mostly to the right side of his mouth. His left arm remained limp, although while we would 'exercise' his arms, he could resist a little with it. He was not able to reach for anything with either arm. His eyes remained rather distant, but we felt there were brief moments he was focusing.

Finally, during the evening, he made one movement we considered 'purposeful.' He managed to get his right arm up to his eye to rub it - something we recognize as a Tyler move. This occurred twice over a few hour period. Fortunately, there were witnesses each time. It was not just the wishes or visions of one person. It's really the first time we could recognize some of our boy in this baby.

Thursday August 27: A little better information today. Tyler was able to stay awake for a little longer this morning. His left side continues to be less active than we would like, but even that seems to be improving. He had another CAT Scan this morning and the preliminary reading was wonderful. The areas of lower density seem to be less predominant than yesterday!! This is not proof that everything will be 100% ok, but it certainly is a step in the right direction.

We have been told enough times now that we are starting to believe it: This damage may not manifest itself at all, or it may be that Tyler will be a little slow learning for a while. Infant brains have an increased ability to compensate for insults like this. We are always reminded that nothing with this diagnosis is certain, but there is a great deal of optimism and hope.

His eyes have actually moved in the direction of people and objects. He is not tracking at all, but will blink and suddenly be looking right at you (sometimes). He is managing to get his right arm up to his face more and more.

I stayed with him last night, and was able to participate in a special moment with him this morning. Wendy, one of Tyler's favorite nurses, got permission to feed him just a little Pedialyte. Tyler LOVED it. He did very well with the bottle, and kept opening his mouth for more. We will not be able to give him any more food orally for now due to the lack of body control he is demonstrating. His 'food' will continue to be delivered via his IV's. The fear is that he may aspirate some of the liquid and develop something worse like pneumonia. It's not worth the risk right now, but it was a wonderful moment for all of us.

One of the tidbits we have been told is we need to look at improvement over a 12 hour period. Recovery from this type of injury is not quick and easy. Only time will tell what sort of residual affect this will have. As long as he shows improvement over each 12 hours, things look good.

We continue to enjoy the support of all of our friends. They have made sure we have enough food and snacks to survive for months ;-) We cannot thank everyone enough.

Friday August 28: How do you write about a day like this? We have set ourselves to look for an improvement each 12 hours. Today only gave us a small change. In fact, we may even say there was a slight regression on some areas. On the positive side, he is able to move both eyes together better than yesterday. He also seems to be able to focus on the person or object he is watching. He ended up being mostly awake for almost 18 hours (so far) today. He worked Donna last night, and did not sleep for more than 45 minutes in a row today. A major bonus today was Daddy finally got a chance to hold him!!! Mommy was able to hold him for some time yesterday. It's amazing how you don't mind holding your child even though your arm is completely asleep, your feet are aching, and your back is experiencing major spasms ;-). It was the one of the best two hours of my life.

On the negative side, his gaze is still very distant. He is not able to track movement. His mouth is often molded into a shape we are not familiar with, sometimes just open and hanging. He stopped the vocalizations he was attempting yesterday as well. There was a chance he would be allowed to take a bottle today, but he decided to have a little episode this morning. As soon as daddy came in to see him, he had a strange tense moment. His legs shook, and he tightened his entire body. The doctors did not think it was related to a seizure, but they did give him a little sedative. After this, they felt he was not quite ready for bottle feeding today. Bummer... You can really see it is wanting to eat something, but...

I am sitting in the courtyard outside his window writing this now. This place has become our haven away from it all. Even though we can see his window from here, we can excuse ourselves from everything for a just little while. We can hardly wait to show him this area when he can run around and play here...

Saturday August 29: Much better today! Both eyes seem to focus on whatever object he has decided to watch. He is still not tracking movement, but there is more and more behind his eyes. He will look straight at you when you call his name. We played the "find your daddy" game for 30 minutes this morning ;-) I would move and ask him "where's daddy?" He would only take a few seconds...

He is much more calm today as well. I think any one would be after the good nights sleep he had. He's been more awake during the day, then he will take an hour nap or so. It's much more normal looking. He spends more time with his right hand up in his mouth. It looks like he is trying to eat his fingers, he must be hungry.

Speaking of hunger, we were finally able to feed him a little clear liquid today! We got approval to give him one ounce each three hours. He did great. He was so happy. So were we. He never swallowed wrong, and finished his ounce in record time. Daddy also gave him a sponge bath this morning. His pits were getting a little ripe ;-)

The pulled his artery line IV and his Foley catheter today. This should help make him a little more comfortable. His last chest tube will probably be pulled tomorrow. They are removing more and more of his drip medications. He is down to three - two of which are food related.

We are starting to see more and more of our little guy in there... He's waking up right now so have to run...

Sunday August 30: A wonderful thing happened today. A group of people from a web site called Storksite contacted us at the hospital. Apparently someone Donna met at a "Mom's night out" event mentioned Tyler to someone associated with this group. They put up an item about Tyler on their support page. Today, they brought us a bag full of email letters written in support of Tyler!! Megan and her Mom (the messengers) also brought a plate of homemade bread for us. It's easy for us to forget the compassion and support that exist for our little guy (and for us). For that matter, it's easy for us to forget that an outside world exists. These incredible people have been through all of the things we have... We don't feel quite so alone. Thank you all.

Tyler got to play with his nurse friend Wendy again today. He had a nice time. After allowing him to eat as much formula as he wanted, she let him eat an entire jar of sweet potatoes and another of pears. He was so happy. Since he did so well, she pulled all but one IV drip. Daddy got to hold him again for a while, It was a perfect moment: He ate, fell asleep on daddy's chest, dad watched golf, then he relieved himself fully ;-). His first poop in a week must have done him good. He fell back asleep for another 20 minutes.

Not as many milestones today, Wendy was happy to see him be a little less tight in his arms and legs. He let her 'exercise' him to his full range of motion. He was not able to focus his eyes very well though. In fact, one would say not at all. It's very hard to see your kid looking that way. He would not engage your eyes, nor would he look at any specific object. It seems like a little setback, but perhaps he was concentrating on something else. He was also very sleepy today, let's hope that it was him doing the best healing he could. We cornered a different doctor who finally told us the damage to Tyler's brain was rather extensive. Not necessarily unrecoverable, but certainly greater than Donna and I had thought.

We're starting to realize that we will not be bringing back the same kid we brought in a week ago.