Saturday, May 16, 2009

Another shit-atstic trip to U of MD Hosptial

During the course of this last week (since Sunday) the boys have been fed through the G port of their feeding tube into their stomachs to see how they would tolerate it. They were doing okay, some vomiting, but then over course of the week it was getting worse. Especially for Cameron. Then as of Thursday night he started vomiting much more freqently at least every four hours. I talked to the GI nurse who said that the GI doctor was out of the office this week and would call me back on Monday. I switched him back to the feedings by the J tube only and thought this should solve our problem. But it didn't. And overnight on Friday into Saturday he vomited copious amounts in his sleep every two hours.

By morning Cameron had vomited in his sleep every hour and a half. Naturally we suspected the tube has slipped again like three weeks ago and needs to be repositioned. Since our GI blows mega chunks and isn't reachable after business hours, and it's now Saturday, and the Radiology dept at the hospital has a skeleton crew, we went to the ER (like the GI told us to do last time) and have them get us in with Radiology fast so the Attending Dr could make the adjustment. So we spent all day in the ER at U of MD hospital (got there at 11:30am) where the boys had the GJ tubes put in. There were no other patients in any of the Peds ER rooms that we could see so we got some quick admission. We explained everything to the nurse, another nurse, another nurse, a resident, the Attending, and even the world's most pompous, cocky, greasy looking know it all on-duty Peds Surgeon and they all agreed that the tube is probably in too far and to take an xray with the contrast dye to check the placement and make the fix.

I had told them all that the GJ tube was supposed to be in between 2cm and 3cm and today it was at 6cm. When I had tried to pull the tube out myself I got it to 5cm and then got a lot of resistance and Cameron started crying in pain/discomfort so I stopped. (I'm a friggin' Human Resources person, not a medical professional. You want to recruit someone or tips on FMLA or new employee orientation I'm your girl. You want medical know how and hutzpah go find farking Meredith Grey and get her skinny ass down here pronto!)

When the Peds Surgeon looked at the tube during his evaluation he said "Oh, there's no such thing as the tube going in too far." I corrected him and pointed out that three weeks ago that was EXACTLY what had happened to both my babies. The tube is in way to far pushing on the sphincter to the intestines and the stomach fluids can't pass so they get thrown up over and over and over which will cause dehydration. His response was to pull the tube out to about 4cm right then but wanted to see the xrays before doing more. And he said he had a little trick that works like a charm on situations like this and he'd do that before we left.

They didn't have the supplies they needed to put the dye in Cameron's feeding tube, but luckily I always carry spare parts and had two for the hospital to use. This always seems to be the case, this hospital not having the basic supplies needed on hand. This is the 2nd time this has happened to us, and the resident even said that they expect the parents to provide the adapters to the feeding tube ports they install in their patients! I should have known this would happen.

Four hours and two xrays later, and still not getting any visit from someone in the Peds GI group, the doctors all said the tube is placed at 8cm and the dye is flowing fine through the colon and so he's getting the nutrients he needs and they won't pull the tube out because it looks fine to them. Call the GI on Monday. *sigh* Great. Medicine at it's finest. Leave my baby to throw up every hour and a half, and upon arriving at home he's had 6 diarrhea diapers over the last four hours. If any of these medical professionals had family members puking their guts up every hour they'd find someone to do something about the quality of their lives. Is that too much for me to demand for my boys?

Before leaving I did tell the doctors that I thought they were wrong about their diagnosis, and that they were likely to see us back in there by Monday at the latest, having suffered another 24 hours of this hell, so we could go through all of this all over again. At no point did they have a GI doctor come talk to us. Oh, and the solution the Peds Surgeon had (and made the resident do because he was too busy to bother coming to see us again after I had corrected him) was to take a suture thread and tie it around the flange at the point where the tube enters the body. We had to take that stupid thing off because it worked to damn well and we couldn't get any of Cam's Prevacid meds through because it was too tight.

Cameron hasn't thrown up since about 7pm but it was in his sleep. It's now 10:17pm and I just went and pulled the tube out on my own to 5cm while Cameron was asleep. He woke up and pushed my hand away and cried a bit in discomfort and started to gag some. After rocking him a bit he settled down and went back to sleep without vomiting. He's slept through all 6 poopie diaper changes, even the one where he pooped up us back and I had to change his pajamas. If we have another night like last night with vomit every hour and a half I'm taking him back to the ER, but this time I'm bringing my big stick with the rusty nails.

I hate hospitals. I really hate this hospital. I hate these feeding tubes. And most of all I hate how brainless all the doctors we've been encountering this year are. Sorry excuse for a medical system.


Trish said...

Can you not go to another hospital? I'm ready to crap in a bag and mail it to these people!

ivory and jamie said...

WTF? How are they so incompetent?? I can't believe you are having to deal with this shit!!

axh2277 said...

Can you go to another hospital? I wouldn't go back there because they sound useless! Sorry you're having a rough time.

Annie and Jason said...

Laura - I can NOT believe the way you are treated!!!

When Jax was vomiting explosively with diarrhea this week, they checked his tube placement...said it was fine...but then decided to put a "shorter" tube in, just in case. What length of tube does he have in? I'm sure poor Cam is deyhdrated by this point! Have they discussed giving him IV fluid or something to help? That poor baby...and you.
He could have a bug? That always exaggerates reflux and causes diarrhea..could they test the stool? They have a great antibiotic if that is the case...why doesn't your hospital take you serious? I f'ing hate them for you! ((running off to see where their GI rates nationally!))

I hope this is just a tube problem for you and you can get someone to listen to you and FIX it!!!!!

good luck sweets

Annie and Jason said...

Here are the top (30 I think?) GI children's Hospitals in the country - take a peek and see if anything else in near you:

Valerie said...

It may be worth calling that #2 peds hospital in Philly and trying to get an appt there. A 3 hour drive may just be the way to find answers to the questions the UofM doesn't want to answer.

Claire Green said...

I have no wisdom but just wanted to tell you that I am praying for you this morning. I had tears in my eyes reading. We have been making up our own medical advice around here and since the beginning of May hardly any vomit until last night. It was just one episode but how easily you block out the horors of it. I cried. My stomach is in knots reading because I know how bad it hurts you. You are doing a great job. I just wanted to say that I know what you are going through, you are an incredible Mom and I am praying for you.

Linda said...

I SO hope you can see another dr at another hospital who will treat you with the respect you deserve. I'm so sorry!!!!!!

Annie and Jason said...

Laura - I lost your email address, could you email me? I have a suggestion to you for the boys.

annie_marie20 at hotmaildoc com

Valerie said...

I am so sorry that this is happening to your boys. Just reading your post makes me so frustrated for you. I can't imagine how you must feel. ((HUGS&PRAYERS))