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Thursday, February 26, 2009

Small Update.....Seizure with Blue Spell

Just a quick update on Tuesdays...................

Wednesday morning, first thing I took Zach to see his pediatrician. She told me she believed that he had a seizure from holding his breath too long. I've seen him have breath holding episodes that lasted much longer and he has never passed out let alone have a seizure from one of the episodes - so I'm a little taken back by the whole episode.

I found out what normally happens to him is called a "Blue Spell"

Seizures can be caused by a blue spell but they rarely happen with one.

She did come to the conclusion from the discription I was able to give her that he was not breathing at the end of the episode.

Zachary will be going for another EEG (he had one about 11 months ago) next Thursday. I was taken back at how fast they got him in - last time it took about a month to have it scheduled.

He will also be going to a pediatric cardiologist on Wednesday. Again totally surprised at how fast we got in to a brand new Dr for us. They told me they don't take what happened lightly and it could very well be a sign of a serious heart defect. They also told me to be prepared to stay there for 3 hours - YIKES!

Zach pediatrician said the good news is (if you want to look at it as) that normally defects like this would be caught sooner so maybe there isn't one. I'm almost looking at it as a bad thing because if it is there.......well I'm sure you all know what I'm thinking.

I was also told not to be surprised it the cardiologist decides to also send Zachary to the pediatric pulmonologist as well.

So next week looks like this :
Monday: DP Appointment
Tuesday: 3 hours of therapy
Wednesday: 3 Dr appointments -- cardio, GI, and the geneticist
Thursday: EEG
Friday: BREATHE --- nothing happening

Wednesday, February 25, 2009

Crying, Breath Holding, Blue Child, ? Seizure....

WTH?!?!?! Can't we ever catch a break?

Last night was a very odd, very scary night for me and the kids.

Last night Zach was all out of sorts. I don't know what happened as many times I don't - Zach snaps something turns him off and he will cry. He used to be a breath holder, but I haven't seen that in sometime now.

Last night I'm really unsure of what really happened to my son.

Last night he was crying.....first it was loud, then it got quiet, then there was no noise coming out of him. He walked over to the couch where I was sitting.....he still wasn't making noise but his mouth was open and he was distraught. I tried talking to him and I'm not so sure he was hearing me. Next think I know is he was shaking and he fell to the ground as he fell he was still shaking, going down he hit is head on the coffee table. By the time his body hit the ground he was limp. It was faster for me to move him then the furniture so I grabbed him. All I remember is how limp he was in my arms head falling backwards -- he was like a rag doll. Not only was he limp he was blue.

I yelled at my daughter to call 911 but she was panicked, as was I. I hovered over Zach about to start CPR and yelling at him to be okay, tears streaming down my face.

What seemed like an eternity only lasted from start to finish about 45 seconds. He started crying (with noise), before I could even start CPR, so I scooped him up and sat on the couch with him. About 20 minutes later he seemed fine. I got up and he followed crying again. Next thing I know the same scenario was playing out in a different room and not as bad.

Was it just breath holding or was it a seizure -- I'm putting that question into the Doctors hands today.....I hope they can answer me!

Thank heaven the rest of the night went better - no more episodes. Zach was fine -- he cried for a long time and insisted on staying on my lap for awhile.

Prayers and positive thoughts would mean so much - seems my little man is still in need of them.

Friday, February 20, 2009


I was recently reminded I needed to post an update on here......

Zach's x-rays came back clear - no pneumonia (which I knew) the biggest relief was that all the views of his heart came back fine.

This week was also a big week as far as appointments go as well.....Zach had his monthly follow up with his dietitian where we heard "he is no longer labeled as FFT" and "that his g-tube is his life saver" He is now 26lbs 5oz and 34in -- This is HUGE all of this growth in only 4 months with his tube. The most weight he had ever gained in 3 months was not even a full 2lbs and height forget it most of the time he didn't even gain a full inch. We are to continue on the feeds the way we have them and the best news of all is we don't go back for 3 months -- another real big deal because we have had to be there monthly for the last 6 months.

He also had an appointment with his pediatric endocrinologist. He discharged Zachary. I have mixed emotions about this because of the things he "yeah the g-tube could be masking another issue" and "his growth could only be because of the tube" and "when he turns 10-12 and his height is still an issue come back and we will discuss HGH" after being asked if RSS was a possibility he replied "Yes, it is but the geneticist will tell you more" and me saying to him "well if it is diagnosed shouldn't we start HGH?" -- "no, I don't believe you need to start them until 10-12" All of this contradicts all of the reading I have done on RSS and treatment, which states to start as soon as a diagnosis is given. Looks like we'll be finding a new endocrinologist - if we get the diagnosis on March 4th.

Zachary has also started all his re-evaluations for OT, PT, and ST. I should have all the information on those in the next couple of weeks.

Next week will be a week of rest (besides therapy of course ;-) and a nice visit from Tanya, Scott, and baby Ben. Then the following week will be crazy, with 3 different Dr appointments on top of the normal week of therapy.

Thank you all so very much for the positive thoughts and prayers!

Thursday, February 12, 2009

Positive Thoughts

Please keep Zach in your positive thoughts today.

Little man is sick (EI and URI) and at our visit to the Dr she decided to send him in for a chest x-ray. Not for his lungs as much as for his heart.

She said it was a long reach but is wondering (since we haven't looked before) if maybe a heart defect is causing Zach's problems.

We are headed to the children's hospital in a little while.

Saturday, February 7, 2009

Faces of Zachary

Thanks Kori for all the wonderful pictures of Zach -- only you could capture him in the light I like! Love You!!!!

Testing Update

All 8 test came back perfectly normal! This is good and bad all at the same time.

Mystery boy is still a mystery and will be undergoing more invasive testing to figure out what is wrong :(

For right now all is the same. If he eats he gets sick out his bottom, if he eats only threw his g-tube all is normal down there. We see the Dr March 4th - if he gets worse we go in sooner.

I hope one day the Doctors we put all this trust in will be able to tell me what is wrong with my son.