5 Months Old

Tucker is 5 months old today! He had another scope/bronch today. The doctor put the little camera in his trach, and he found that Tucker's tracheal and bronchial malasia (floppy airway and lungs) is even more pronounced than he thought, but they can't do anything about it. He just has to grow out of it. They did not change anything about his trach-making it longer or thicker, for example. He is also getting a swallow study tomorrow. They are trying to see if he is breathing in formula after he nipples it. This could cause lung problems, and if this is the problem, stopping the bottle feeds would stop the problem. They did a study like this before, though, and he did not have any aspiration. So. . Also, his blood pressure has been high, so the cardiologist is going to check him out. Last night, I brought Tucker's new CD player and his lullaby CD. We listened to the CD and the country station. Tucker is so cute! He looked at me the whole time, even when I was on his left side (he is usually too lazy to look on his left!). So I am so special. When I would move around, or move him around, he would cry until he could see me again! He's not supposed to have separation anxiety for several more months. He is not supposed to be teething either yet, but he is. He's doing some things too early and other things (like breathing), he is very late on. So we'll see. . .one more month until Tucker's 6 month pictures-he gets to wear his cutie outfit from Meredith (although Chris says "men" don't wear outfits-it's just clothes).

Tucker's "Firsts"

Tucker has been having a lot of "firsts" lately. He had his first smile the other day b/c of a reaction. He always smiles, but it's not necessarily when he's happy. He loves looking at his vent-it's like he's watching TV. It has bright lights and it makes noises, so that must be why he likes it. Anyways, the other day, he was laying there looking at it, and the RT turned the screen so she could write down his stats. Tucker made his "sad" face-pitiful! Then she moved it back, and he made a big grin. He is such a mess! Now that he's older, he has "TV time." His first movie was Lady and the Tramp. His nurse said he fell asleep during it, but when she turned it off, he got upset. So he must have been listening to it. He likes to know that someone is there, so he must have thought the movie was some one giving him attention. A big first is the other night I gave him his first bath in a tub! It was so cute. He fussed b/c he was naked, then we put him in the water, and he totally relaxed. He loved it. He sat there for a few minutes, and then we started scrubbing. Of course he did not like that. He is very slippery in the tub! That was Friday night, then Saturday night Chris went with me and we bathed him together. It is really a two person job b/c someone has to hold his head or his whole body while the other person scrubs various parts. I cleaned Tucker's left, and Chris cleaned the right. Well, after that, we were so tired, but Tucker was wide awake-and it was feeding time. So the nurse said it was time to nipple him-he gets one bottle feeding a day-and he has not been doing too well with it. She said I could feed him, so it was the first time Mommy ever fed Tucker. He did a good job-took half of his bottle, which is about the same as when his nurses do it. So he did well! Plus, he looked at me the whole time-feeding time seems to be the only time he'll "let" us hold him laying down like a baby. The rest of the time he likes to be held sitting up. It was Mommy/Tucker love time. Except after awhile I was so tired! I said, "we're supposed to do this every 3 hours?" LOL Chris said, "maybe when we have our next baby, we'll ask the doctor to put a g-button on him, too." LOL just kidding! We want Tucker to eat by mouth, no matter how much sleep we lose. Also, Chris is SO tricked by Tucker's fake cries. We were getting his bath ready, so we had him laying down in his bed-he started crying and making his "i'm so pitiful" face. Chris said, "shouldn't we do something-does he need something" His nurse and I laughed at him. He'll learn. Chris did a very good job cleaning Tucker's trach and his g-button! Yay for Chris-it is so easy to do this stuff b/c you're just taking care of your baby. It's the same as bathing him or changing his diaper. You have to do it to keep him clean, and after awhile, it just becomes another part of your baby routine.

The Results

Tucker's scoping went fine. He was so good today. His gas this morning was 140-WAY high! So they moved his rate up to 60 and his pressure up to 60. He was very well-behaved while he was poked all up for blood work. As long as he had his paci, he was fine. The doctor found that Tucker has a floppy airway which makes it very hard for air to get into his lungs. The vent has to push very hard to get his airway to open up, and then when it opens, all of the air rushes in at once-then after a second, it shuts right back off. So his breathing is not working the way it should-it's a mechanical problem. Once he gets the oxygen in, his body can take it and use it-it's just not getting in there really well. Dr. Thomas said he just has to grow out of it-so, more waiting. He said we'll shoot for having Tucker home for Christmas-but, we'll see. They also put in a thicker trach tube-so his leak is gone. So more oxygen is getting in-his rate went down from 60 to 50. But he is going to be upset when he wakes up and realizes he can not cry or talk to us. He was getting so good at it! Because his trach tube is so thick, I can't change it until they open his stoma a little more. His stoma is the opening for the trach. If I tried, I might push too hard or something-the Dr said he had a hard time getting it in-it's a little snug. Dr. Thomas is very nice. He answered all of our questions-well, the ones he knew the answers to. The main one: "when is he coming home?" no one knows that! He asked "Tucker, when will you be ready to come home?" Well, he didn't answer, so I guess it's a surprise.

Tucker's Trach Check

Tucker's pulmonologist, Dr Thomas, is going to put a scope down Tucker's trach tomorrow to check out everything. Tucker has a pretty big air leak around his trach, and a lot of air is getting up into his nose and mouth. Tucker is supposed to breathe through the trach, not around it. So they are thinking there might be something obstructing his airway. This could be what is causing his rate and pressure to need to be so high-the vent is having to work very hard to get air into Tucker's lungs. This would be great, because it would mean that they could fix the obstruction and that the problem is more of the airway, not so much his lungs. So fix the problem, and his rate and pressure should get lower (they're still both at 55). So we will find out tomorrow if this is the problem. The procedure is scheduled for 1030. Tucker will be taken to surgery, and put under anesthesia, but it is not a serious ordeal. It should just take a few minutes. Then we'll know the verdict. So keep Tucker in your prayers. He fake cried for me today-he is SO pitiful! I held him, and when I put him back in his bed, he made this cute little "please feel sorry for me" cry. What a brat He is getting to be awake for long stretches of time, and he is so spoiled! He has to be sitting up all the time, not laying down-he's too big for that now. He cries and makes a lot of noises-that will probably change once he gets his trach fixed-but I'd love that if it meant he was getting more oxygen. I changed his trach again on Monday-this Sunday, it's my husband's turn. Let's see how he does.