Monday, February 18, 2008

One Step Back :-(

Last night was a schosh rough for our little man. (A schosh is in between a smidgen and a hair.) About 0330 he started to storm pretty good but this time he was sweating like a snowball in Hades. It isn’t uncommon for him to perspire some w/ his storms but this was like his old man after a 3 min jog, dripping. They had to change his picc dressing twice he was leaking so badly and the tape that holds his feeding tube in was coming off. That proved to be costly later on. When they were doing their A.M. checks they felt it prudent to weigh Charlie por que, I don’t know. He is supposed to get weighed every 24 hrs and he had been weighed around 1600 the day before so I inquired of its necessity; “Well he’s awake so we’ll do it now.” I’m sure this CNA was just doing what she was told but it turned out to be ill advised. Long story short; while moving him to the scale from the bed Charlie’s feeding tube got jerked out. Dad got pissed, made comments about individual levels of competence and sat indignant the rest of the morning. Now Charlie is down getting a new chow chute put in so that he can get meds that were due almost an hour ago. Today we’re looking forward to a visit from a Neuro-Radiologist for an understandable explanation of Saturdays MRI but it is a holiday so if he’s on the same kind of schedule that STRICU payroll nazi’s are we’ll see him when he’s good and ready and not a minute sooner. (Inside joke: Susan is the aforementioned nazi and her work schedule makes banker’s jealous.) Odds are he’ll be here tomorrow. Thanks again for all your comments and support. The advice has been invaluable. I never new my family was so smrt, oops, I meant smart.

7 comments:

Meghan said...

you know thats how he rolls, a few forward, a few back. as far as having a bad night, her certainly has had worse...
btw, you knew you had smart sibs, and you know who is the brightest of them all...

Suz said...

Hello Pot,
Losing a feeding tube is not a biggie. I am shocked he has kept it in this long in light of his periods of naughty behavior.
XOXO,
Kettle

Troy said...

Yah let me tell you about feeding tubes!!

The following occured in July of 2006

Troy- Ill take Jada for a walk outside.

Andrea- Ok but watch that feeding tube the tape is getting loose.

Troy- oh it will be fine.

Andrea- here let me put more tape on...

Troy- Dont worry about it were ready to go!

Andrea- Ok, just be careful

[Troy and Jada Rose walk around the block]

20 minutes later Troy enters the house with tears in his eyes a very yellow albeit happy Jada Rose is holding the end of her feeding tube in her hands....

Andrea spends the next 10 minutes re-inserting the feeding tube enduring Jada's gag reflexes and gut wrenching screaming... Troy (a very humbled and ashamed dad) stands with tears streaming down his face)

Andrea stares into Troys eyes and walks away snapping her gloves off. No words were said, none were needed...

At that time it was a pretty crappy day! But now I laugh at it. Some day Rob this will be just a memory. Hopefully a memory worthy of a chuckle or two... But for now I am so sorry you are dealing with this stuff. You are a strong man and a Magnificiant Father!

Anonymous said...

Charlie's got to let everyone know who's boss. I'm just glad he had a good day in the midst of it all. Those are some hopeful things that happened yesterday!

Lisa said...

Hi,

My name is Lisa. A friend told me about Charlie's situation, and I have been 'checking in' periodically to see how the little man is doing.

I am very sorry to read that Charlie has had a rough night/morning. I have a great deal of experience in pediatric medicine, both as the patient and as the provider. If you would like, I can suggest some questions for you to ask the myriad of people associated w/ Charlie's care. As you know, sometimes so many providers are involved it is hard to sort out what questions to ask of which person or sub-specialty. Please email me directly if you think my thoughts would be helpful to you.

I hope this finds you and yours as well as possible, and we are all pulling for Charlie.

Lisa

Roxey said...

sweet dreams, sweet boy.

Bill & Jen said...

That's too bad about his rough night...but it looks as if his heart rate is getting down to where it is more normal when he is sleeping or just hanging out peacefully? I don't know much about medical stuff, but if that's the case hooray!!