September 1998

Sunday, September 6: We have adopted the idea that September will bring new an great things to our story. A new month, a fresh start. So far so good. Things are progressing slowly, but they are progressing. Each day brings us a little sign of his desire exert his old self. He is able to focus on toys and people now. He has also proven he can hear quite well. He absolutely loves music, unfortunately for him he mostly hears us singing ;-) I cannot imagine that to be soothing (except when mommy sings - she has a much better voice).

His appetite has continued to impress us. He is eating almost more than he did before the operation. It certainly is easier to feed him. He does not resist a spoon at all. We still have not been able to get him to latch on to a bottle or his sipper cup, but he will take drops of fluid on his tongue. This can take a while to get a decent amount down his throat, but it is worth it...

Tyler's favorite nurse Beth from the NICU (the early days) did us an incredible favor tonight. Donna and I have not been able to spend much time together during the past few weeks. She volunteered to stay with Tyler for a few hours at the hospital tonight so we could go out and be a couple again. It was an awesome gift. We certainly did not have to worry about his care during this time - not only is she immensely qualified as a care-giver, but loves Tyler almost as much as we do. She give him a bath, but more importantly, got him to drink 7 (yup seven) ounces of low fat milk. We need to have her around more often!! (hint hint ;-)

Let's see, milestones. Both legs are working rather well right now. He stretches them out when he wakes up just like he used to. His right arm can scratch his mouth or nose almost at will (his left arm is still a bit behind, but it is moving more and more each day). He still does not track objects smoothly, but he will move his eyes to find them again rather quickly now. As I mentioned above, his hearing seems to be intact. His appetite is wonderful. The most important thing for us though is his focus. His eyes have a lot more 'behind' them that they did a week ago. He looks around the room checking out anything and everything he can. All of the Doctors are happy with his progress.

His chest tube out put has finally slowed again. The low fat diet he has been on for a few days really seems to have helped. There is a chance that we will be taking him home in the next few days!! It certainly is not guaranteed, but the possibility exists. We can hardly wait. Not only will he be surrounded by familiar sights, we can begin to rebuild our life with him. AND (heaven forbid) Donna and I can start to have a more normal life again.

So far, September has been a better month!

Monday September 7: Rather good news this morning again. Dr. Lamberti says there is a good chance we will be able to remove the chest tube tomorrow! Once this is out, the count down starts for bringing Tyler home.

He had a good night sleep last night. We're hoping to get him back on a good schedule before we take him home. It will certainly make it a bit easier for us. He is not able to move himself enough to change position at night though. I find I have to turn him over about twice a night. He usually let's us know when it is a good time for him ;-).

Wednesday September 9: In true Tyler form, he still has his chest tube. They noticed a bit of fluid buildup on an X-ray. The fear was that the chest tube had clogged. This could be a problem. However, it looks better today! They have told me that they WILL be removing this tube this afternoon. YEAH. Perhaps we can start thinking about home again.

He is becoming more and more irritable when he is fussed with. This includes the physical therapy as well as feeding time. He turns his head back and forth. It makes it hard to feed him, but I guess he doesn't mind food all over his face ;-). He still won't smile though. We would love to see that. He continues to improve slowly. He seems to see better and better. This morning, during a fussy moment, I said a few phrases I know he knew well. He instantly stopped fussing and stared right at me. There certainly is more and more behind his eyes each day. We have a long road ahead though. Each step is small, but at long as he keeps taking steps...

Saturday September 12: As promised, they did remove the chest tube on Wednesday! What a relief for our little friend. He has been so much happier. He continues to refuse bottles and straws, but we can get him to take some liquid from his sipper cup. Not nearly what they would like us to get in him, but apparently enough. They ran a blood lab yesterday to check on his hydration level, he passed with flying colors! I guess he just doesn't need as much liquid as the rest of us ;-).

Perhaps you guessed, we are still at the hospital. The night they pulled the chest tube out, a ton of goop poured out of the site. Not only did it fill the dressing, it overflowed on to mom. Its great to get that stuff out of him, they expected (and hoped) to see a decent amount. They changed his dressing again today, it was finally dry. It looks like that is the end of chest tube worries. If tomorrow morning's X-ray is good, we should be packing up!! That will be 22 days in the hospital this time.

As of yet, no one is certain why this happened. They feel it occurred sometime during the operation but, without further testing, we may not ever find out. Even some of the tests may not be conclusive. It will not change the way we treat him anyway. We already know enough about what is wrong to know what needs to be done. We will have a long road of physical, occupational, and speech therapy appointments (assuming the insurance company agrees with their diagnosis). We still hear the "six months to a year before we will really know what the permanent damage will be" statement. This is a long time for us to be patient, but it is what we have to do...

Tyler has been treated to some new tastes lately. He not only got regular milk, but we have been giving him chocolate milk!! It's fun to see his face when he realizes this fluid we are dumping in him mouth is "not so bad." He also is getting marshmallows. He plays with them in his mouth until they get soft, then down the hatch they go. Feeding is getting a little easier, especially if we sing the alphabet song. He almost always stops fussing when he hears you singing.

Both feet are bicycling now when he is fussing. He also is using his left arm a bit more! He has stopped rubbing his face though. His hands rarely get near his head. There was a couple days this past week where he started grinding his teeth as he was fussing. That was awful. Anyone in the room would start to cringe when they heard it. That seems to have subsided now though...

Well, it's late. I need to sleep when I can. Let's keep our fingers crossed for a homecoming tomorrow..