Saturday, July 01, 2006


Not to be outdone by Evan, Mr. Maxwell has decided he too will be in the "sick list" again. Darnit. I am waiting right now for the doctor's office to open (fortunately they have weekend emergency hours) and hopefully they can see Max fairly quickly. As my doctor says, Maxwell has a big *star* on his folder that gets him in ASAP! Hopefully the weekend doc will do the same.

Max has been vomiting on and off this week, and it has been very confusing. First it seemed like his feeds were just too much because he would vomit after a feed without any coughing. (And his vomiting can be quite an ordeal, because his mouth and nose must be immediately suctioned to avoid aspiration.) So I experimented with various feeding techniques, and small amounts throughout the day and night seemed to work a little better. Being attached to a feeding tube is quite difficult to do when the lil' guy is learning how to roll (yes you read that correctly...Max is now ROLLING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) His rolling takes quite a lot of effort, but he does it and that is what is most important!!! YAY MAX! See there is the silver lining in all of this!

Anyway, then the coughing and gagging kicked in the last few days and that always seems to result in more vomiting. Then a low grade fever started yesterday, along with general crankiness and major coughing. This continued throughout the night.

So here we are. I try to not get disappointed with all of these episodes but it can be incredibly frustrating. He doesn't seem to go more than a few weeks without getting sick, requiring xrays, blood tests, medications, the works. Quite honestly, it usually is less than a week by the time one passes and the other begins. And each time you can't help but worry is "this" the illness that will land him in the hospital? Is "this" the one that will turn bad?

I know this is life in CHARGE land, but yikes...what these kiddos endure is incredible. They are absolutely the most amazing kids I know. Can you imagine any of us "healthy adults" experiencing the level of pain, medical care, challenges and illnesses that they experience on a daily basis? Brave, determined, unique, and yes a little fragile. But they make up for that with all that courage and cuteness, don't you agree?

I'll keep you posted on the hospital visit. He has A LOT coming up this week, so I am hoping this "bug" leaves quickly! He has a VERY full day at Children's (a gazillion heart/lung tests), special visitors and lots of local appointments.


Mary Karr said...

Hi Amy,

So sorry Maxwell isn't doing well. You are right, everything always seems to happen on a holiday weekend.

When Max was in WV, I could tell that he was trying to learn to roll. Good to know that he built up the strength to accomplish it. He is a determined little guy just like you are determined to do everything you can to help him. You both are amazing.

Let us know what the doctor finds. You both are in our prayers.

Love, Mary

Heather said...

It's funny that an seemingly endless sting of colds is part of a normal childhood, so why does something that is a "rite of passage" have to be so tough for your little guy? Frustrating that some of the "normal" stuff is so much more magnified in CHARGErs.
Thinking of you both today!

Moriah (zandysmom) said...

Awwww sending lots of (((HUGS))) to both of you!!

We had to stop feeding Alex attached to the tubes afterwhile because the constant vomitting. I instead found a 10 ml syringe that fits directly into the MicKey button w/no tubing. I would put in 1-3 syringes at a time (about .3-1oz at a time, like a toddler taking a drink), then wait a few minutes & repeat. This stopped Alex's vomitting almost all together. I did this based on advice of a feeding therapist who said that gtube kids need to be a more regular schedule (if they can tolderate it) of feeds rather than large boluses or cont. feeds. It was an interesting concept to me & turned out quite well for us, Alex gained 3 lbs right away.

If you are interested I have a billion syringes, I would be more than happy to send you some so you can try it out.

Anonymous said...

Saying prayers for ya'll to quickly heal.

Hope he starts feeling better soon.

elle said...

wow hope he gets better soon

elle said...

wow hope he gets better soon

Sarah Key Storrs said...

We are hoping and praying for a speedy recovery.

Sarah, Jeremy, and Evan

Dylan (and Kristy) said...

Hi Amy and Max,

We are certainly praying for a quick recovery from this "bug". Take care and give me a call if you need anything.

Kristy, Ray, and Dylan