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!

(Video takes a second to load)

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.

Improvement!

Jetty's chest X-rays are finally showing sign of improvement. Still partially collapsed lungs but they are starting to clear up

Mommy made a special request to hold me without the bipap machine hooked to me.  They weren't so sure at first but she convinced them if a resp therapist watch my sats and had the mask ready to go if needed.  Mommy got to hold me for 1/2 Hr (it felt like 1/2 a minute) and my numbers only drifted down a couple of times but came right back up. We were both very happy and now we are allowed to do this a couple times a day.  Yay!

My chest x-ray is worse yet again. Now both of my lungs are partially collasped and I have fluid on my lungs.  They are giving me some Lasix which should help with that and make me pee more. So on top of the pneumonia and collapsed lungs, I have some pulmonary edema.  The doctors say this is going to be a long process and will probably be here for a while.

Who knows... may be I will be one of the first patients in the new Children's Center which is opening soon!

Hanging tough

This morning's chest xray shows that my pneumonia has worsened since I arrived a week ago. I still have a partially collapsed lung which the doctors are focusing their attention on. They hooked me back up to this bipap machine which has caused a painful sore to form on my nose. My seizures have been severe on top of everything else probably because of the discomfort I am in from everything that goes on in the ICU. I had a good Easter yesterday. The Easter bunny came in and brought me and my co-residents baskets of goodies. Mommy and Daddy brought me goodies too. Daddy brought his iPad so we could watch The Masters together. I was happy for Bubba Watson because I like his name and he hits the ball far like Daddy. Either Mommy or Daddy or both are here with me every day. They said Clay isn't allowed in here because he would break things and cause me injury. I miss him but I agree with their decision. Thank you to all who are continuing to pray and included me in their Easter blessings. I am fighting this as hard as I can and hopefully the evidence will soon start to show.

Happy Easter

Mommy and Daddy got here this morning and brought me an Easter basket. They didn't realize the the actual Bunny had already came by to see me and gave me a basket with much better stuff!

My nose is raw from the bipap machine so they are giving me a break from it. I'm not doing much better but glad my Mommy is here.

Clay and Olive aren't allowed to visit so they made me a nice Easter egg!

Not a good day for Jetty. His condition is worsening. They are maxed out on bronchial dilaters as well as the settings on the bipap machine. His lungs are in bad shape but he is a fighter. Currently he is getting a PICC line put in so he can start getting nutrition and avoid the multiple stabbings throughout the day.

Finally resting without struggling to breathe!

Hey daddy!

They are pretty sure now that Jetty has pneumonia. His chest X-rays show severe congestion with partial collapsing of the lungs. They are pumping him with antibiotics and oxygen. He had a rough day yesterday with seizures probably due to the numerous cultures, needles, etc.

Today he seems to be more comfortable but his chest X-rays appear to be worse. Probably will require a few days of this treatment before he can come home.

Jetty returns to Hopkins...

Jetty has been having a hard time breathing over the past month or more. All of his symptoms add up to pulmonary edema so we scheduled an appointment with a pulmonologist for April 19th. It worsened this past Sunday when his breathing became very weak. He was losing color and his finger tips and lips began to turn purple at times. We used to have oxygen in the house but got rid of it since it was never needed.... Ugggh. We were able to get his color back with some lung percusions and different positioning. He was able to do some coughing and we have a suction machine in the house which helped.
So we scheduled an appointment for his pediatrician so that we could get oxygen again. At the appointment this morning, his Doctor told us that he needs immediate care due to the lack of oxygen so he sent us to the ER here in town. They won't admit Jetty here so once again, Hopkins sent their helicopter for Jetty and this time Mommy got to ride with him.
He is now there being treated for Pneumonia and possible pulmonary edema. His breathing patterns are already improving but needs more time to really clear his lunges.




Pictures from early February...