Swinging

Olive let me sit in her swing. I even got a break from my oxygen and did ok.

I am doing GREAT! My seizures are at an all-time low. I am tired a lot and still need oxygen all the time but am happy to be home with my family and doing well.
Mommy wants to send pictures of me to the hospital to show them how well I am doing. Thank you to everyone who has been thinking and praying for me. I know that has a lot to do with why I am doing so well.

I've been doing well the last few days. I really enjoyed the boat ride but got some sunburn on my face... Thanks Daddy.

Went to my cousin Brenna's birthday party Monday night. I slept in my stroller the whole time but heard it was a good time.

I received a package today all the way from Montana! The Seacats (dear friends of mine) sent me this heart stone that they find on the river banks.

I'm still hanging in there. My seizures aren't too bad and my nose is healing nicely. My breathing is the same but this oxygen machine really helps. I really like having food in my belly again rather then getting it through IVs.

Went on a boat ride this afternoon! The weather was great and I was feeling good too! I require oxygen all the time but my seizures haven't been bad at all.

Jetty's Baptism- 4/28/12- Fleetwood Residence

So today I was baptized by a very nice gentleman named Reverend Vance. I am not sure what a Baptism is but it consisted of my family, great food, and a wet forehead.

That brother of mine is always a jokester.

Clay and Olive sure are happy to have their big brother home. I just wish they'd ease up on my face a bit!
I've been doing a lot of sleeping since I got home. I guess I am just catching up from the past several weeks.

It's 9:30 pm and i am more calm than i have been in weeks. It's amazing how much better I do at home!

This is what was waiting for us!

Heading home

Mommy and Daddy are here this morning to take me home. We are waiting for the medical supply company to deliver the equipment to us here in the hospital and train Mommy and Daddy how to use them. They want to use ambulatory services to get me home but Mommy nixed that! There have been many visitors (doctors, nurses, specialists, case workers, etc) from all over the hospital that have met me at one point over the last few years, come by to say goodbye as they have heard that I was leaving. My nurse today is in awe and thinks I am famous. Hopefully we are out of here in a few hours!

Mommy and Daddy sat down with all of my doctors this afternoon to talk about my future. I wasn't there but Daddy said he now knows where I get all my strength from and he was very proud of Mommy, as am I.

The Attending Pediatric Doctor said that my abilities to breathe on my own have come to an end. Sometimes I can make it a few hours without the bipap machine but that's about it. Much of this is due to my long stretch of seizures that are very severe. My Neurologist said that Ohtahara Syndrome is fatal and most don't live past 1 year. He also said that my seizures have progressed as expected to the point that they can not be controlled with medicine. Mommy and Daddy requested that I get to come home. Everyone agreed with their request as long as we could get the proper equipment available at the house. The discharge nurse (who Mommy had been talking to over the last few days) spoke up and said that it is already arranged and should be set by Thursday. The doctors all grinned knowing that Mommy gets things done!

On Tuesday, July 7th 2009, the worst news imaginable was delivered to Mommy and Daddy when they were given my prognosis at a similar meeting to today's. As hard as that was for them, it did not prepare them for today. I write this most difficult post to date with a heavy heart as my days are numbered. I am so excited to get to go home and enjoy them with Clay and Olive who I haven't seen in over 3 weeks. Daddy promised to put the boat in the water and take me for a cruise. This is going to be a special weekend for my family and I am really looking forward to it.

I must end this post with a quote from one of my favorite writers... "Don't cry because it's over, smile because it happened". - Dr. Seuss

I've now been here for three weeks and I am not getting better. My seizures are so bad now that they almost have to put me in a coma to calm me down. I am still in need of the bipap machine every couple hours but my lungs are finally clear. They don't think I will ever be able to fully breathe on my own again without the bipap machine. Maybe if they didn't give me so much seizure medicine, I would be strong enough to breathe on my own!
Mommy and Daddy are meeting with all of the Doctors here at 4pm today to discuss bringing me home. I really miss Clay, Olive and Barney... its been 3 weeks since I have seen them!
Hopefully, my next post will be from the car ride home!

I wanted to prove to Daddy that my lungs do work!

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I had some bad seizures two nights ago and my breathing wasn't good. They did a chest X-ray yesterday morning and my right lung had partially collapsed again. They put me back on the Bpap machine continuously. Looks like I bought myself some more time in the ICU!

My lung quickly opened back up yesterday but they realized that they were moving too quick for me.

Since I behaved myself yesterday and last night, the plan for today is to give me an hour break from the Bpap machine every 3 hours. If I do well with it, they may change it to 2 hour break every two hours starting later today. They also changed my mask with one that won't hurt my nose so much.

Spa Day at PICU

Two weeks straight on the Bipap machine does its damage to a good hairdo!

I am finally getting breaks from the machine. They were going to start with  a few 1 hour breaks throughout the day but since I have been doing so well, it has now been off for over 8 hours! My nose is starting to feel better from where the machine really rubbed it dry.

So now I will just have to wear it at night time if my xray still looks good!

Mommy was so happy to see me without the bipap! Since Mommy is always sooooo concerned with my hygiene, she jumped at the chance to wash my hair. I keep reminding her I'm a little boy and supposed to be dirty but she won't have it.

I feel like a new man!

ND tube insertion was a piece of cake!

They lowered the settings on my bipap machine! They have been sticking this vacuum down my nose and into my lungs for 2 weeks now which is terrible!
Well, they must finally be sucking something up because it's making a lot of noises and these people start hootin and hollering like they caught a big fish.
My chest is feeling better and it's not so hard to breathe anymore. They are planning on sticking a feeding tube down my nose today so that they no longer have to feed me through the iv. They don't want to use my normal feeding tube in fears of aspiration since this bipap machine tends to cause that.