Thursday, March 31, 2011

We love applesauce!!

Today was a big day for Timmy. If you remember, we have been trying to teach Timmy to eat again. But we have not been having very much success with the bottle. But Timmy loves his spoons, and he seemed to like to take drops of milk from a spoon. So today Timmy got to try something brand new--applesauce!! And he absolutely loved it. Between myself, Timmy's mommy, and his therapist, we got Timmy to eat 12 or 13 "tastes" of applesauce. The first few spoons had teeny little drops of applesauce on them, and the last few spoonfuls had little dollops. This moose is not very good at measuring, but I think that Timmy might even have taken a teasponful of applesauce!! He loved it so much that he did not even share with his best buddy, Mortimer. Timmy's mommy tells me that I do not need to eat because I am full of stuffing, but I do not believe her. I think she is full of stuffing. :)

I have never really thought about eating before. It is one of those things you just do. But we have learned a lot about eating...

--Sucking is a reflex for the first few months of a baby's life. That is why eating was a little easier for Timmy a few months ago. But now that Timmy is a big boy he has to choose to suck. That is why when we give Timmy a bottle he just plays with it and chews on it. He is not really interested in sucking. He is more interested in being a big boy and using a spoon.

--Eating goes much better when it is on Timmy's terms. It is very important that we make eating a positive experience for Timmy so that he will still want to do it (since he is big enough to choose now). Mommy has figured out that Timmy likes to eat much better when she puts stuff on his spoon and lets him do whatever he wants with it. Sometimes Timmy gets stuff on his ears, but he is already very good at putting the spoon into his mouth right away. We also never do things like scrape off Timmy's chin with the spoon, because we want him to like eating. The messier, the merrier!

--Learning to eat is hard when you do not have a motivation (hunger) to do so. For Timmy, eating is more of a game than anything, because he does not yet realize that it is important. Eventually Timmy will not be on continuous feeds anymore. When that happens Timmy's mommy and daddy will time his eating times for the times when he has not been fed for awhile, so that he is hungry. Then they will turn the pump on, so that he starts to associate being full with putting things in his mouth.

--Normally babies start on foods like fruits and vegetables when they are learning to eat. But one of Timmy's therapists told Timmy's mommy that if he had trouble with "normal" foods she might start Timmy on meat purees. For some babies who have never learned to eat, starting with meat is easier. This moose is not quite sure why, but has decided that anything Timmy wants to eat is okay, as long as it is not moose meat!

It might take us a long time to teach Timmy to eat. But we are okay with that, as long as he gets all the nutrition he needs through his G-tube.

In other news, Timmy's Mommy told me that we have a possible discharge date! This moose is not going to spill the beans, though, because the nurses told him not to jinx anything. But this moose can tell you that the date is very soon! It means that a whole bunch of people have been running around trying to get things ready for Timmy. Timmy's daddy is making sure Timmy's new home is clean and ready for Timmy. Timmy's mommy has been on the phone with lots of different people: the home nursing people, the people who will give us Timmy's equipment and supplies, the Medicaid waiver people (to pay for the home nursing), the people who will give us Timmy's drugs, the people at the pediatrician's office, the people who will come to Timmy's new home and do therapy, and all sorts of other people. This moose never knew before how many different agencies we would need to take care of one little boy!

The best news of all is that Timmy's daddy will come to Cincinnati after work tomorrow night. And when he comes, he will not have to leave Timmy and his mommy again, because Timmy and his mommy will go home with him!!

And, finally, go Cincinnati Reds!! Timmy's mommy and daddy have never really watched baseball (though they did go to one or two Astros games), but Timmy's mommy heard on the news today that it is opening day. So Timmy wore his baseball outfit (until it got covered in applesauce). The Reds are big supporters of the Ronald McDonald House (Timmy even has a Cincinnati Reds outfit to wear when he's bigger), so this year we are rooting for the Reds!

Tuesday, March 29, 2011

Feeling better!

Timmy is finally starting to feel better! Thursday and Friday were his worse days. He was a little better on Saturday--he was even awake some on Saturday, but when he was awake he was not really alert. Sunday was a bit better. And yesterday we thought Timmy was finally starting to feel normal again.

The doctors are not exactly sure what was wrong, but we think it was the result of some bacteria in his PICC line. His PICC was clogged on Wednesday night, so they put some special stuff in to break up the clogs, and then they flushed the line. We think that when they flushed it, some bacteria was pushed into his blood. It is also possible that some of Timmy's ickiness was caused by teething and/or missing Mommy.

The good news is that we do not think that this will push back our plans to go home by more than a couple of days. They pulled Timmy's PICC line on Sunday--this is the first time he has not had a PICC line since he was five days old.

Yesterday Timmy's nurse thought his mommy had gone completely crazy. They were giving Timmy a bath, and in order to do so, they had to unplug Timmy from his monitors. They also clamped his G-tube. Since the PICC line was gone, that meant that for the first time ever, Timmy was not attached to anything. Timmy's mommy picked Timmy up and went running around the room (even out in the hallway), holding Timmy up in the air and waving him around saying, "So this is what it's like to have a wireless baby!!" I ran in circles around them, squeaking up a storm.

Every day now Timmy gets to do "tastes" of milk, up to 5ml. Timmy has not been too interested in a bottle. He mostly just chews on the nipple and looks up at us, as if he is asking, "So what do you want me to do with this?" He has been playing with spoons, and today we decided to put his milk on a spoon for him to taste. That went much better! He took 3ml by spoon today. We should have known that Timmy is a big boy now and does not want to do little baby things like drinking out of a bottle. But I can safely say that Timmy still likes eating me the most!

Timmy is six months old today! We had a party for him this weekend while Daddy was here. And then Timmy wore his hat for rounds this morning. Poor Timmy is going to be very bored when we go home. He will not have all of his friends stopping by to talk to him all the time. But we cannot wait to introduce Timmy to home, and to outside, and smells, and sunshine, and what it feels like to zoom along in a stroller, and carpet, and to the joys of taking a nap without anyone cleaning or emptying the trash or stocking his cart, and...there are just too many exciting things to think about!

Friday, March 25, 2011

We miss Mommy!

(written on Friday) Hi folks! Mortimer here. Timmy has been giving us a bit of drama the last couple days now that Mommy is in Houston defending her dissertation. He was all smiles with Mommy yesterday morning but after she left he ran a fever and his heart rate was high (200's when normal is 130's to 150's). Not only that but when his Daddy was putting him back in bed last night, his G-tube popped out of his tummy. They decided to try a mickey button G-tube in its place which would allow us the freedom to take off the tube part when the time comes when he will not be on continuous feeds. That popped out this morning though (the balloon that holds it in place was completely deflated so it might have been that or it might have been that his G-tube hole was just too big for the button to be secure...or a combo of both). So now he has a normal G-tube that is slightly smaller than the one he had 24 hours ago...and they made sure the balloon is inflated. They are still running tests to see what is causing Timmy's resent sickness. The blood cultures came back normal and we still have to hear about the urine and trach cultures. I will keep you posted.

Hi it's me again. It's Saturday now and Timmy is still sleeping. we were afraid that he would be getting his nights and days mixed up when he slept from 1pm to 10:30pm yesterday. But when his Daddy came in at 9:30am this morning he was still asleep and the nurse said he had slept all night. We tried to wake him up and play (I even tried my squeaker) but his droopy eyes would not budge so we decided to just let him sleep. In rounds this morning the doctors said that his urine cultures are still negative so they don't think this is a result of bad stuff in his pee. They do think though that it might be a result of some bad bacteria that was introduced in his body from his pic line in his arm. It's really old and they are thinking now that it is doing more harm than good so tomorrow they are planning on pulling it since he hasn't been on TPN for a few days and he has been tolerating full milk feeds for a few days.

In other news, Timmy can now say that he is the proud son of Dr. Mommy!!! This moose was so excited when he heard that he had to go out in the hallway to squeak up a storm in celebration since Timmy was still asleep. Yay Mommy!!! We are so proud of you!!! But we are so ready for you to come back (I think Timmy's Daddy is the most ready) :)

Thursday, March 24, 2011

All about eating

Since Sunday, when Timmy's surgery was canceled, it has felt like things are really starting to move along. Tomorrow morning at 6am, he will be up to full feeds--this is a huge milestone! The next step is to work him up to fully fortified feeds. Because he's had so much trouble growing, he needs extra calories and nutrients added to his milk. It's estimated that normal breastmilk has somewhere around 20 calories per ounce. They'd like to work Timmy up to 30 calories per ounce. Right now he's at 22.

Currently Timmy's feeds are continuous. That means a pump pumps his feeds in constantly. Originally they wanted Timmy to be gravity-fed by the time he goes home. But it will take some time to get him there. So they've agreed that we can take him home on a feeding pump and work on consolidating his feeds at home at our own pace. We're quite happy to take him home on a feeding pump! What's one more machine, right?

So right now, if Timmy continues to tolerate his feeds well, it's possible we could be taking him home in a week or two! There is a possibility of another surgery, but we're hoping to avoid it. They've talked about doing a Nissen fundoplication--this involves wrapping the top portion of the stomach around the lower portion of the esophagus. It would prevent reflux. If Timmy has significant reflux, there's risk of damage to his airway repair. But right now he's doing so well we think we can avoid the Nissen! (This is another potential argument for using the feeding pump, since pumping in the feeds more slowly means that his stomach isn't as full, and that usually helps him keep stuff down.)

We've been doing tastes with Timmy again this week. They're not going as well as the last time, but that's okay. Though his therapists tell us he's doing fabulously in comparison with other babies who start learning to eat at a similar age! Two months ago, when he was starting to learn to eat for the first time, he was still young enough that the sucking reflex largely took over. Now he's much older and has to choose to suck. But he doesn't really understand the point--after all, since his tastes are not nutritive and he's not hungry, he doesn't have any great motivation to eat. The other factor is that he's just not used to sitting on someone's lap to eat. When we hold him we're usually playing, reading books, or he's sleeping. So when we hold him to eat, he wants to play. So we let him play with the bottle :) One time this week he took 5ml orally. Usually it's 2 or 3, and once he wouldn't really take anything. But he's showing a little interest, which is great! And if he never takes a bottle, that's no big deal. Thankfully since we have the G-tube, there's no great pressure for him to learn to eat right away, since he's not dependent on his oral skills for his nutrition.

Timmy loves to put things in his mouth, though! Looking through some recent pictures, about fifty percent of them have him mouthing something. We're looking forward to bringing him home, where we can work on all of this at our own pace (and where he won't get woken up every time we put him down for a nap by someone coming in to empty his trash or stock his supplies or mop his floor...oh for the day when he can take uninterrupted naps!).

Sunday, March 20, 2011

No surgery!!

As of 7pm this evening, Timmy's surgery (scheduled for 7:45 am tomorrow) has been canceled. Several days ago we noticed that the former J-tube site had started to heal up. We have no idea why it would suddenly start healing after six weeks. On Thursday morning they took Timmy down for another upper GI. It showed no leakage. So late Friday morning they started him on feeds at 1ml/hr. They've been gradually working him up ever since. He's up to 10 ml/hr (full feeds would be about 25 ml/hr) and so far there is no sign of any leaking! They held the OR slot for him until today at 7pm, when they decided to cancel his surgery. There is always a chance that his hole will open back up and he will need that surgery later, but the doctors are hopeful that will not happen. We're a little hesitant about celebrating too much, because we've been through so much. But obviously this is great news! If things continue to go well and Timmy continues to tolerate his feeds, we could be home in a few weeks!!

And what does Timmy think about this latest development? He was too busy reading to be reached for comment.

Saturday, March 19, 2011

On the benefits of a trach...

When Timmy first got his trach, his mommy and daddy and I all thought it was a little scary. But now we love it. Here are a few reasons why... The most obvious reason that we think a trach is the most fabulous invention since purple antlers is that it helps Timmy breathe. Now that he has a trach, he can spend his energy smiling and laughing and playing and developing and growing instead of spending it all on breathing. It has been a long time since Timmy has turned blue and has needed to be resuscitated. We are all very grateful for that!

But there are some other less obvious reasons why we think the trach is fantastic...

It is a lot of fun to play the piano with a trach. And we would never have known that if Timmy did not have one!

Timmy loves it that the trach provides a convenient thing for him to grab onto. It is like a built-in toy! (Timmy also likes his g-tube for the same reason.) Timmy's mommy and daddy are trying to break him of the
habit of playing with his trach and g-tube, though. They are so mean.

We can cover Timmy's entire face with a washcloth or blanket to block out the light (since there are always lights on around here) so that he can sleep. As long as his trach is not blocked, we do not have to worry about him being able to breathe!

We came in during one of Timmy's naps and found him sleeping with a plastic ring around his trach. When he went to sleep Timmy's mommy gave him the ring to hold in his hand, but while he slept he stuck it on his trach. If we ever get bored, we could put Timmy on the floor and play ring toss! (Disclaimer for those of you that do not know, we are not actually planning to put our child on the floor and throw pieces of plastic at him...)

Timmy cannot make noise when he cries. Usually we do not like this aspect of the trach because we miss his voice. But it has the potential to come in handy. If we ever fly on a plane and Timmy gets upset, we will not have to worry about annoying the other passengers. And when we take Timmy to church someday, we will not have to worry about him interrupting one of his grandpa's sermons (unless an alarm goes off, of course!).

Timmy's mist collar provides a really convenient thing for him to suck on. Especially convenient for him now that we think he is teething!

Timmy looks so handsome with his trach. In fact, we have started to think babies that do not have trachs look a little funny!

When Timmy is out of bed, we put a little thing on the end called an HME that humidifies the air that goes into Timmy's lungs. Another name for it is "artificial nose". That gives us material for all sorts of funny lines that never seem to get old:

--Uh-oh, I jus
t dropped your nose on the floor, I better get a new one!
--Hey, stop pulling your nose off!
--Where's Timmy's nose? I thought I left it sitting in the cup over there but I can't find it.
--Why does Timmy have two noses sitting here? Which one is newer?
--Hey, how did your nose end up in your diaper?

And now, everybody sing along (to the tune of "Head and Shoulders, Knees, and Toes":

Trach, PICC, g-tube, j-tube hole, j-tube hole
Trach, PICC, g-tube, j-tube hole, j-tube hole
ID, pulse-ox, lead, lead, lead.
Trach, PICC, g-tube, j-tube hole, j-tube hole!

Tuesday, March 15, 2011

Scopes and surgeries!

Hi everybody! I am so sorry that I have not posted in a long time. Timmy and I have been so busy playing that I keep forgetting to tell you all about what has been happening.

Last Monday (March 7) Timmy went on a field trip to the OR so that the doctors could take a look at his airway. The ENT doctor came out first. He said that there is a lot of swelling in Timmy's airway that they cannot explain (sometimes it just happens) and that there is a scar band that is making Timmy's airway narrower. They will have to remove the scar band surgically, but they can do that at the same time that they do the surgery to take his trach out someday. But his graft looks great! Yay Timmy!

After that Timmy's mommy and daddy talked to the pulmonary doctor. He said that Timmy is looking better on the outside than on the inside. His airway is very swollen and still really floppy (they call that malacia). He is a little bit surprised that Timmy is breathing as well as he is, without any vent support. His biggest concern is that if Timmy gets a little cold, he will probably have to go back to the hospital for a week or so in order to get some help breathing. So when we come home, if you want to see Timmy, please make sure you are healthy first! They are also going to give Timmy some drugs to help with the swelling in his airway.

When Timmy came back from the OR he was mad as a hornet. They finally had to give him some sedation to calm him back down. And the next day he still had an anesthesia hangover. But he is a happy boy again now!

In other news, Timmy has a surgery date for his belly! While we do not want Timmy to have to have another big surgery, we realize that this is our only option. So Timmy will be going to the OR on Monday, March 21. They will probably have to do a bowel resection--this means that they will cut a section out of his bowel and then sew it back together. But they are not completely sure what they will have to do and will not know until they get in there.

We are hoping that Timmy will be able to come home from the hospital a month or so after his surgery. We hope that it will not be too much longer. We are getting tired of the hospital. Timmy misses his daddy during the week, but he sure likes to talk to him on the phone!

Thanks for listening! I am sorry this moose is such a slacker when it comes to updates.

Saturday, March 5, 2011

Our holy child

Hi ya'll. Mortimer here. ABCDEFGHIJKLMNOPQRSTUVWXYZ. I'm just remembering Timmy's Daddy having fun signing the alphabet to Timmy. Timmy loves watching his Dad make all the interesting shapes with his hand. Mostly the past few days though Timmy has been either wanting to play hard or he has been fussy. I keep asking Timmy what is wrong and he tells me that it's a combination of beginning stages of teething, dirty diapers (who likes those?), junky airway, and of course the stomach bile still squeezing out onto his tummy. The contrast study on Thursday was successful because it told us that Timmy's J-tube hole is indeed leaking out on his tummy. Yes I know we all already knew that but they were looking for other possible issues besides that and they found none so that is good. Surgery is planning on the next tummy surgery within the next couple weeks. And now...the moment you have all been waiting for...Timmy pics!!!

We love you Timmy!