Hi, Deb.
Does Hudson still have a fever?
Dr. Saneto read the EEG: hypsarrythmia, epileptic spasms – so nothing new or different from previous EEGs.
He promises he’ll write that letter. I will keep on him!
Dr. Saneto is going to contact Dr. Carter and try to get you in sooner. I’ll follow up on Monday.
Pam
Need I say more?
Oh wait, there is MORE!!!!!!!!!
Still don't feel like blogging, talking, eating, smiling.............
but I am...I'm here...reluctantly.....
and only because Hudson needs prayer and I know some of you who follow us pray...daily for the needs of our family.
and some of you are good friends....and because I know you want to call me and reach out....... I'd rather stay in my cocoon right now ......
Sorry mom....it is even hard to see you right now....I just want to hide....from everything
I feel like if I blog, or see friends, or family I am too depressing to be around, talk to, be with
and I don't feel like faking it!!!!
I was feeling a bit better this morning, because good-bye's are the hardest but once it's done...I have no choice but to move on. So like I said, I was feeling better.
Hudson had a GI appointment this morning. On the way he had a seizure like no other...a shrill of a cry I have never heard. Hunter even commented that it must be a new seizure, because he had never heard one like that before!
At our apt. we talked about his 2 hospital stays in Nov and Dec. and how for 6 months now we have been dealing with this gunky cough. I never really thought my appointment would lead to further GI testing, but when I told him the Dr. we were referred to couldn't see us until the end of March, he became very pro-active, which is great, but as I asked questions I did not like what I heard.
He figures we must rule out the "reflux" possibility as the problem of this cough/congestion, and since there is all this time before the pulmonary apt, he would like me to go with that crossed off the list as possibilities.
So......
On Tuesday at 11 a.m. we have to go for an upper GI. This will tell us if the Nissin is still in tact, which was the surgical procedure he had done way back in Dec. 2007 to prevent reflux and vomiting.
We then have to do a 24 hour PH Probe on Feb 8, where they will stick a probe down his nose and monitor for 24 hours to determine how much acid reflux is coming up.
If the nissin is in tact, it is unlikely reflux is the cause of the problem, however it could have loosened and still allow some refluxing.
If this seems to be the problem after having both tests done, the doctor prefers to have a line placed from G-tube, and have feeds go into his small intsetine for a period of time...if the gunk and cough gets better, we know this is the solution to the problem.
For me, I am really hoping this is not why he has the gunky cough. We have always done bolus feeds with Hudson since his G-tube was placed and since the small intestine is much smaller than the stomach, we would then have to put Hudson on a pump and he would be fed over a 12 hour period.
Selfishly, I don't want to feed him on a pump. I don't want something attached to him all day. I don't want to deal with yet another thing. I am very comfortable feeding him bolus feeds, it's quick and easy! I feel like we will be so restricted.
Again, jumping the gun...don't know this is the case...but it's possible...and the thought makes me unhappy.
The kicker was getting the email above on my blackberry, after I got in the car from this GI apt, which was a response from an email I sent last night. That is when the emotions and tears kicked in.
I feel defeated in all of this.
I feel alone.
I feel like prayers work for everyone else....
but us........
yet.... the only reason I am sitting pecking away right now is to get all/any prayer for my little guy, because I know you all are faithful in praying and I need you to know the latest.
We can't catch a break.
I am broken right now.
I am tired of this.
I am sick of hospitals.
I don't want Hudson to go through another scream fest......
to use all of the little energy he has, to cry and fight and be terrified.
He deserves NONE of this.
Yet the suffering continues.........
and it feels endless........
When will this kid catch a break?
WHEN???????????
