Update 24

COMING HOME?

 Anyone who read update 23, 23b, 23c, and 23d knows that things can change very quickly when it comes to Thaddeus.Things have been stable for a couple of days now, so I will what has been going on since we last chatted.

Due to the concern over Thaddeus' mediocre eating, the doctors had contemplated replacing the feeding tube, feeling that they had removed it to soon. Thaddeus must have heard this discussion and took it as a challenge. The very next feeding he ate quite a bit, so they held off on the feeding tube. The next several feedings were all at least at the minimum and were creeping nearer and nearer the goal. As I may have mentioned, several days ago, one nurse felt that Thaddeus was sucking on his low flow nipple so hard that he was pinching it off. This made him work harder and tired him out sooner. Those nurses then changed Thaddeus to a regular flow nipple. This increased his feeding totals quite a bit. However when the woman in charge of feeding found out, she immediately changed it back to the low flow nipple. This was because Thaddeus has a damaged nerve that doesn't allow his left vocal chord to close on command. So, he can't have a regular flow nipple because it may allow food to go into his lungs instead of his stomach. As such, he was put on a low flow nipple again for a few days. Then one night a nurse noticed how hard he was working to eat so she switched to the regular flow nipple and he ate better. I asked her to please check with the woman in feeding since that had not been allowed before. When the woman in charge of the feedings found out she fed him herself again. She noticed that Thaddeus seemed to be sucking so hard that he was pinching the nipple closed. (No, I didn't just copy the same part over by accident.) So, since she still believes that a regular flow would be bad for Thaddeus, she had Dede buy a specialty nipple. More of a medium flow I guess. Since that time he has been feeding very well. His goal is 60 cc's every three hours. He had many feedings at 70 a few 80's and even a 90. Occasionally he has a 30, but that seems to be a snack and he then makes up for it on the next feeding. The biggest thing they are looking for is weight gain. We had been celebrating 2 gram increases. The last three days he increased 50 grams, 50 grams and 10 grams. His goal is to average around 25 a day. So they did a heart failure test last night and when the results came back today, he had passed. So, the plan is we get to take him home tomorrow!

That said, let me explain what home means in this case. He is still on oxygen and may well be until surgery number 2. We have a large machine in our house that takes the air in the house and removes most everything but the oxygen. It is about the height of Quintin and weighs about as much as Jeremiah. It comes with a very long hose, but we do we have three stories counting the basement. We are sure how Dede is supposed to carry Thaddeus and this machine down the steps at the same time. We do also have some small oxygen tanks for when she needs to leave the house with him, but those do cost extra and we don't know if there is a limit on how many we can get. As I mentioned once before, we will have to weigh him each day, check his blood oxygen levels each day, administer medicines three times a day and keep track of each ounce he eats. We will also see the Doctor here in Fond du Lac every other week. On the opposite weeks we will need to take him to Children's in Milwaukee. Always on a Tuesday. It seems that if your life isn't in danger they can only see you on Tuesdays. Anyhow, we will also have a nurse come to our house once to twice a week to check up on us, and Children's will call us each week to check in as well. This will continue until his second surgery. No one knows when the second surgery will be since it is really up to Thaddeus. The average is at 4 months old which would put us at mid June which of course would work fine for me. However, they have had it as early as two weeks after the first surgery. (It already has been three for Thaddeus.)

If you are having the same question we had, you are wondering why if he needs all the monitoring he is going home, or if he is well enough to go home, why all the monitoring? When they used to just sent the babies home and check in once every two weeks or so, they found out that they lost about 20% of the babies before the next surgery. Since Children's started the Inter-stage Monitoring Program (he is inter-stage since he had the first surgery and is waiting for the second) they have lost 0. The program is designed to catch anything, anything at all, early. Since any little thing can be a big deal, they want to deal with it before it does. If he gets a fever it may increase the vascular pulmonary resistance. Add to that he won't want to eat so he gets dehydrated. That may mean his shunt clogs and blood stops going to the lungs. OR, his numbers go down, we call in, they admit him, he gets an IV and is fine and goes home in a few days. In fact we were told that 60% to 80% of all inter-stage babies get readmitted to the hospital before their second surgery. We also have to be a lot more germ phobic than we are used to. So we will be collecting small bottles of antibacterial gell and spending much of out time asking people not to touch Thaddeus even though he is really cute. (Speaking of which, I hope to have some more pictures by next time.)

So, this isn't simply a matter of taking him home and waiting for the next surgery. It is a lot more involved than that, but WE GET TO TAKE HIM HOME!!!!!!!!!!!!!!!!!!!!!!!!!!! Well,Lord willing.