Brody is doing really well at home. We have been keeping busy caring for Brody, but it is also difficult to stay home all the time. He was done with one of the meds yesterday and he is mildly jittery and emotional today. The other med is done Thursday and we expect some more difficulty this week. He is getting stronger and can walk on his own now. But he still grabs on to the walls and furniture for support. That's about all going on here.

Home

Hello. We got home late Thursday afternoon and it took a little while to get adjusted. We are so glad to be home. Brody requires medication every three hours around the clock, so it is a little like having a newborn again. He slept a lot this weekend, but today he seemed to get back into somewhat of a routine. We were able to take him to church this morning and it was really good to see people again. We follow up with his pediatrician tomorrow. We have a nurse coming out twice a week to check on him and we will be setting up a heavy schedule of therapy. Physical, Occupational, and Speech will be helping him recover. He has walking braces now and needs help standing and walking. He can stand for a couple of seconds but then falls down. He can walk while hanging on to hands, sort of like when he was learning to walk. In his mind, he can do it, but then he falls so he needs to be watched closely. He still vomits when eating, so we need to work on that with Speech. We are thickening his liquids and he is doing really well with that. Other than that, he is acting like a typical 2 year old and testing his limits. We tell him "no" and he proceeds to do it again. Tonight, he was kicking kitty. Good times...

I'm home!!!!!!

Brody is 2 years old today!!!  Here are some of his gifts!!! He thanks you for making his birthday extra special.

Guess Who's 2!?

Happy Birthday to our 2 year old! Today is Brody's birthday. We had cupcakes and had a great time! Chelsea will post some pictures later.

Brody has been throwing up regularly and spiked a slight fever today. They think it is withdrawal, but he has also been rubbing his left ear. The doctor said there is some fluid behind the eardrum and Grandma thinks she saw a tooth coming in. So, who knows but they are starting an antibiotic in case it is an ear infection. He hasn't been his Smiley self today. And he has been sleepy. We have the swallow study tomorrow and he is getting some walking braces.

Mr. Brody got himself a vest. It inflates with air and shakes him like a milk shake! It is to knock the mucus loose from the lining of the lung and help him cough it out.
Now I'm playing with a ball that you put shapes in. After you get tge shapes in you then you take the ball apart and put it on your head.  Grandma and Grandpa came to visit me! We played with stickers. Also wheelchair foot rests make good chairs for little people. Aren't I just the coolest?

Had a good conversation with the doctor this morning. Brody is looking great from the lung standpoint. Now we need to work on being able to eat without the tube. He has been throwing up his meals for the past two days, mainly after coughing. The thought is that he needs more time to strengthen his neck and throat muscles. We already know he is aspirating his liquids, and the last thing we want is for him to aspirate his vomit again. So, the plan is to feed him continually through the tube over the weekend. Then, the swallow study will be repeated Monday or Tuesday. By then he will be weaned more from the drugs (yep, he is still getting those for a slow withdrawal) and he will have had four more days of strengthening his muscles. We are happy with that plan. We get to go for a wagon ride in the hall today! He is napping now and PT comes at 11:00 and Speech at 12:00, so we'll see how the afternoon goes and maybe take a ride.

There is no more talk of going home, so we are not planning for this week anymore. Brody was switched to the low flow cannula today, which we consider huge progress because he needs to be on low flow to go home. He was at 3/4 liter most of today. We'll see how tonight goes. He usually needs more when sleeping. He is working on crawling. He can get his legs under him but his upper body strength is still not enough to push up into a crawl. So he creeps to the edge of his mat and tries to go further, but we need to keep him on the mat. He has been reaching his arms out with his palms up for everybody who enters the room; a gesture to "pick me up!" He had a swallow study this morning and he is aspirating his liquids. So, we need to give him liquids with a spoon so he only gets one sip at a time. They recommend brushing his teeth before giving him anything so if there is bacteria in his mouth he won't aspirate it into his lungs. He threw up yesterday and today. We think with all of these eating issues that we will stay here for a while. That is okay, we don't want to be discharged just to go home if it is too soon. We don't want to end up with problems again. So we take it a day at a time.

Sorry about the late posts!! Big sis has been BUSY with work and school here are all the ones I've needed to post.

Brody sits up for a little bit on his own with pillows behind him for when he falls over. He has been jibber-jabbering like crazy, playing with toys, and giving smiles to the nurses. We are planning to move out of PICU tomorrow and onto the regular floor. He is still on the high flow cannula getting 3 liters of air and 35% oxygen. Once he gets down to 2 liters we should be able to switch to low flow, which is what we are used to at home. He will likely be released on oxygen and will still be weaning off the pain meds which we will give by mouth at home. He still has his feeding tube, which needs to come out before we go home. He will get therapy; physical, occupational, and speech. The doctor said we could possibly be released by the end of this week, but cautioned us not to hold him to that because it depends on Brody. But he is doing so well. He will need to be home for a while to both build up his strength and to keep his exposure to viruses down as much as possible until the end of flu season. We are going to check out if we can get a home care nurse or what our options might be to care for him at home for a while. There are many unknowns but we'll work something out.

Friday

We moved rooms. We are now in 5119. It is still the PICU, but down the hall with much less support. Instead of one nurse per child, our nurse has three kids. So we are definately needed here to take care of him.