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...

Jetty has a little sister!

It may look like a smile to Mommy and Daddy but really I just tooted.

I sure hope my baby sister, Olive, is going to help me fend off Clay! Clay is very sneaky... he sometimes likes to give me a gentle hug, then out of the blue... bam!... a smack in the face!

Jetty is almost 30 months old and doing great. His daily seizure count is down and he seems to be very comfortable. We had to move his bedroom upstairs to make room for his new little sister. He seems to like his new bedroom because he is sleeping more at night than ever before!

He is now 25 lbs which is the most he has ever weighed.

jetty has had severe seizures the past week and after days of trying to figure out why, we decided to get him checked for kidney stones due to his calcium levels. chester river did an ultrasound and found he has kidney stones and gullstones!!!

so we gave him some morphine which helped with the pain brought him over to the hopkins er. so here we are, waiting for the plan. the goodnews is jetty is finally calm (morphine) and sleeping for the first time in 3 days! i also want to apologize that my blackberry will not let me use capital letters???

Jetty turns TWO!

Jetty relaxing with his Aunt Debbie!

Two years ago, we dealt with one of the hardest moments of our lives... despite the poor prognosis that he was given, Jetty is still here and fighting. I have never been so proud of him. He is an inspiration to us every day.and we are truely honored to have such a son as well as the family that came to celebrate the day with us.

Surrounded by family and presents!

Taking a nap so that I have enough energy to open all of these gifts!

23 months old

Jetty's Occupational Therapist and Physical Therapist help Joe from Chesapeake Rehab Equipment measure Jetty for his new custom wheel chair being ordered. We are expecting it to be delivered in 120 days.

Recent Jetty Pictures...

If you mess with my covers one more time, you're going to find yourself on the floor!

Grandpa thinks I'm being all cute and cudily... little does he know I have a load in my pants!

Jetty had a Neuro checkup yesterday at JHU. They could not believe how well he was doing and the fact he was now 23lbs. His last visit was in October (4 months stretch!!!) and we have not changed his seizure meds since. The Neurologist told us yesterday that he will have his "ups" and "downs" and to enjoy his "ups" when he is doing well, and fight through his "downs" during the bad times...easier said than done!

We are looking forward to warmer weather and getting him out of the house. We plan to spend lots of time on the boat and in the pool this summer. Other than that... he is gaining weight, cutting teeth (slowly and painfully), fighting colds, and being cute and cudily.

All's well on the home front!