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Wednesday, April 22, 2009

Update

After over five hours I finally called for the third time in the day and spoke to someone about Evan. The GI nurse says she thinks Evan has a stomach virus that is going around but we think it's a crock of crap and they just do everything in their power to keep us from coming in to see the Dr. Last time something like this happened and the doctor said she was never made aware that we'd been calling every week for help. We have an appointment with them next week but we've placed several calls to try to get them to see us sooner. We will be asking for a copy of the boys medical files and looking for another GI, either at craptastic Johns Hopkins or DC Childrens Hospital, though we're hoping to find a GI peds specialist in Annapolis for several reasons. In the mean time we're stuck working with our current GI.

Tonight I weighed Evan before his bath and since Sunday (today is Wednesday) he has lost 9oz. That's a half pound in three days. All from the violent vomiting. Today he's now 16lbs 1oz down from 16lbs 10oz. He's got a sunken fontanel and his diapers are not very full at all when I change them every four hours, so his urine output has decreased. I'm trying to see if he's having any tears when he cries but so far his cries are fussy I'm Not Happy I'm In Discomfort cries and not bawling upset cries. He's fussy all the time, whiny, and lethargic but a tiny better than he was yesterday. You can definitely see and feel the difference in his muscle tone and weight.

We are giving him Pedialite and it is helping but we're sure that there is something wrong with the GJ tube placement. It may be in but we're convinced there's something not right causing him great discomfort. At our next GI visit we will be talking about scheduling to have the boys tubes replaced with the smaller McKey Button version. Hopefully that will help and be a better experience than our initial GJ tube placement.

On the flip side Cameron is doing fantastic. Sleeps like a champ from 6pm to 3 or 4am with rarely a peep, except when woken up by the screams of his brother. He's in a great mood, and is now 20lbs 4.5oz. With this weight packed on he is much stronger and more willing to explore his strength by pushing and pulling on me when I hold him so that it's like trying to hold on to an octopus. I love it! He's sitting unassisted for upwards of 20 minutes at a time, but can't put himself in that position at all. We're working on that. He can stand on his own for a few seconds and can go from sitting in a chair to standing as long as he has a table to lean on. He's eating pretty well though the volume he can eat is still an issue. We switched to a deeper Take & Toss plastic spoon from our usual Gerber's rubber coated spoon and I'm not sure why but he seems to enjoy eating off this new spoon. And this week Cameron finally learned to do something that Evan has been doing for about four months... He can put his paci in his mouth by himself!!!!

Prior to this week Evan was standing with assistance nicely and he can sit unassisted for up to 10 minutes when properly occupied with something fun. I'm sure once he's feeling better he will be back on track in no time, but it's so frustrating to see him struggling in so many ways.

I am also looking for a Chiropractor who is experienced with infants with reflux that is covered by our insurance. Since we're on track to hit our catastrophic limit for the year it should be covered and I'm going to take advantage of every service we can get. One of my good online friends Sweater has had great success for her son Jax who's going through the same things and he's now sleeping 9 hours a night. Dear god what I wouldn't give for even just four hours of uninterrupted sleep, unworried about Evan's spontaneous vomiting.

3 comments:

ivory and jamie said...

20 lbs?? C weighs 20 lbs?? Holy crap boy!!! I can't believe it :) I hope that E starts feeling better and you figure what is bothering him.

Jennifer said...

Maybe you aren't allowed to do this, but I would take him to the emergency room. I took Evan in because he was throwing up 3 days straight, wasn't having much urine output, and they were almost going to start an IV. And since your baby is losing weight, it is now a life thing. Tube or virus, losing weight and dehydration is an emergency situation. Fuck the GI. I don't trust anyone anymore. Maybe I'm off base, but...Call me anytime you want if you want to talk.

Claire Green said...

I think about yall often when I read I can physically feel your pain.....I hope someone keeps your kids and gets you a hotel room for Mother's Day because you deserve it! We are praying for you daily. You are doing such a wonderful job with them.