just left ER

[SARAHSARAH253]

Hi there,
Well, yesterday Johnny started complaining of a tummy ache. He pooped yesterday at 3:00 p.m. it was a normal solid poop. Through the nightlast nighthe cried and fussed we were up every hour with him. This afternoon I tried getting him into all his different doctors. With no luck of any of his regular doctors being able to see him. We took him to our children's hospital and GI doc ordered X-RAYS of his tummy. But didn't see him. Then we walked to the ER and waited to be seen. The ER doc had a surgeon call us and the surgeon wanted to admit him into the hospital for observation and IV fluids, and tube down his throat to remove pressure. Later they told us they wouldn't do the tube down his throat. Then we had an enema done and Johnny pooped two big poops and came back to life. Still extremely tired and begged please go home. My husband decided not to admit him and take him home for observation. Ahh, I know allot of you would of listened to the surgeon. But, I know in my heart my little boy was completely exhausted. After another poop in the bathroom and a family meeting. We decided to take him home, and if he wakes in pain we will rush him back and admit him into the hospital. Of course I will take him into the GI doc tomorrow for further X-RAYS My question is do enemas ever relieve the pressure enough to stop it? I hate the guilt for knowing i signed my child out with our the doctors okay. They made us sign all the waivers of liability Just so conflicted. The only comfort is the silence of the house that my little boy is comfortable in his bed.

 

[LouLou]

Did you get to talk to a one of your cf doctor's on call? Were you at the hospital where his clinic is? If he pooped big poops, I'd say - but I'm no doctor - that he's probably good for the night. He may need to do miralax or something until you can be sure he's regular also you'll need to evaluate if any damage was done or if there's anything else to be learned from this experience (was he dehydrated, etc?). I would have likely done the same thing. Admitting is not always the best thing. Play dumb if need be tomorrow - the cf center may be on the defense since you didn't follow hospital procedure. Explain you wanted to make sure he got excellent care - their care - and that you'd like to discuss a plan for if this ever arises again how they would like you to handle it. Who knows maybe you could have an "at home" plan you do for given time to see if you get results. You're doing a great job momma....being Johnny's #1 advocate!

 

[LouLou]

Also you need to discuss with them why you were unable to see them in an emergency situation. Cfers shouldn't have to resort to the ER...only as a very last resort. Shame on those doctors! Sounds like you need to discuss this with each of them. They left you for the wolves. One thing our ped told us was that anytime I call I am to mention that my son has cystic fibrosis. I've never had to wait more than 2 hrs to be seen at the ped and the cf doc can get us in within 12 hrs. usually...and these weren't even emergency type situations! Unacceptable!

 

[edan]

Omg that sounds very similar to our day! Had a big poop yesterday then up all night with tummy aches. Also with a few vOmits. Xray showed lots of compacted poop. The two things that are helping her the most are warm baths and putting the vest around tummy. It rOcks her to sleep.

 

[Ratatosk]

Sounds like the enemas probably did the trick or at lease helped significantly. When DS had his obstruction, we took him to the ER and they ran an IV and began to think we made a mistake because he'd perked up significantly -- thought he just had a stomach bug until the did an ultrasound and determined he had an obstruction. They wanted to admit, run the tube to relieve pressure and observe him, but based on DS' hinky history with obstructions, DH called his doctor, who called back and indicated he wanted to see us in the City the next morning.

IMO, follow Lou Lou's advice and get ahold of your CF team. Followup with an ultrasound, ct scan...

 

[hmw]

My decision would have depended on what the xrays showed. Was all the poop low in the colon/rectum or did he have further obstruction farther up in the intestine? If they didn't explain the xray findings to you, they SHOULD have. After pooping as much as he did in the ER, did they repeat the xrays? Again, they should have.

In my personal opinion, I don't think the plans they had for you were particularly comprehensive or confidence-inspiring if it were Emily in that position (Emily has a hx of obstruction that we've had to go to considerable lengths to address.) What were they going to do to help clean him out- were they going to administer anything like miralax, milk of mag, mucomyst, gastrografin enema, golytely as a last resort? IV fluids to keep him are a good idea if he was dehydrated, which can contribute to constipation- but fluids straight to the intestine are vital in trying to clear obstruction or constipation.

It can be hard to get someone to see you right away without the specialists all playing 'hot potato' and shunting you off to someone else. I agree with Lauren that it's vital to tell everyone you speak to that Johnny has CF, because that puts an added layer of importance to his need to be seen, because CF complicates stuff like this. A typical/healthy kid who is constipated because he doesn't eat his vegetables and drink enough water is not in the same league as a CF child who may be dealing with a bout of DIOS, but the dr (and 'gatekeepers' on the phone that get to decide who sees the dr and when!) won't know that unless it's clear to them the child has CF and has been in pain for X amount of time and is dealing with X symptoms, etc. In our case, Emily is now followed by GI for her obstruction issues (they got beyond the scope of her CF team to address and she now sees the GI at the hospital who treats nearly all the CF kids who need one) but we keep her CF team in the loop when things get bad. In an emergent situation after hours though, her specialists have little choice but to send her to the ER- if she's in a great deal of pain, she is going to need xrays and treatment that cannot be provided elsewhere.

So for our answer on 'what would we do', given that our hx includes obstruction that has gotten quite severe, if the surgeon wanted us to stay, we would have stayed- simply because I know from prior experience how bad things can get. However, we wouldn't have done so without an acceptable plan of action for how to address the problem and proof there still WAS still a problem after a couple trips to the bathroom, and from what you tell us here, I don't see evidence that would have satisfied me if that were Emily.

Oh> re. your enema question- a fleet-type enema will help constipation that is low down in the colon/rectum, but won't touch obstruction higher up in the intestine.

 

[Ratatosk]

Harriet has some good advice. I was going to add, that when DS had issues as a baby with constipation, would get the hard tummy, stop eating and would sometimes spit up, his doctor had us give him milk of magnesia a couple times a day until we got him cleaned out. Some children are on maintenance doses of miralax. So it would be helpful to have a plan in place with you GI/cf team on what to watch for, what to do.

 

[SARAHSARAH253]

Thanks everyone for your replys. I asked about miralax last night, and the er doctor wouldn't discuss it. They wanted us to stay, PERIOD. That was the end of discussion. I just wish I could of spoke to someone on our CF team.

Johnny slept for 4 hrs once we got home. I gave him some orange flavored pedilite. Then he started vomitting it up again through the night. He hasn't peed or pooped since 6:30 last night. I'm waiting 50 more min until the hospital turns on their phones.

Have the suitcases packed. Lysol wipes, purell, stuffed animal friends, buzzlight year blanket, pillow, his favorite book, iPad for games-movies, new bottle of enzymes, vest,.....Been preparing myself for this day for years. Wish I had some sleep so I would be stronger. I know we have to put are brave face on for him but Im feeling like a coward. Please say a prayer for Johnny.

Love,

Sarah

Ohhhhhh and that ache of missing my little girl just sucks. To top it off I checked facebook last night and my sister posted something about how sad it is to hear little baby's cry it out. Stab me in the heart! I know she didn't mean for me to read it, but all night I just wanted to puke over it. My husband couldn't stand in and called his parents to see what was going on. They had no idea my young sister in law had posted in on het fb wall
Just had to vent sorry

 

[Ratatosk]

Keeping you in my thoughts. I'm so sorry he was vomiting up the pedialyte. Hopefully they can scan Johnny and figure out what's going on and come up with a simple solution. Please keep us posted.

 

[hmw]

Vomiting and no pooping sounds like he could have further obstruction. In future- if they know he's backed up and he starts throwing up- bring him right back in, that is a potentially serious symptom. Does your CF team have an after-hours on call dr? Ours has someone on call 24/7. Even if no one got back to you during office hours, calling back once the answering service was available may yield a callback since it's a different paging system and maybe a different dr than who was in clinic that day. Worth a try for next time. I'm so sorry you were missing your little one. Could one of you stay with your daughter and one of you stay with your son to help ease that pain and help make the decision-making process less emotional in these circumstances?
eta> I am really sorry the ER didn't do a better job of answering your questions and outlining a better tx plan. That makes it all so much worse. Was this the same hospital that your cf center is located or a local hospital that doesn't specialize in kids?

 

[CJPsMom]

Praying for you and your family. After meconium ileus, requiring two surgeries (ileostomy & takedown), I watch poop like a hawk. It's so hard being a parent of a cfer. So much to learn and so much to try to figure out what's best and when it's best.

I hope you get better treatment today at the hospital.

 

[SARAHSARAH253]

Being admitted now

 

[hmw]

Wishing the very best... please keep us posted if you are able to. <img src="i/expressions/heart.gif" border="0">

 

[SARAHSARAH253]

Update....hello from our "Hotel Room". (The Hopital) Well here is our update. Wed night went to ER for tummy ache, and puking. Once there we had x rays, and they got him to poop twice. They wanted to admit him in for observation. We refused and took him home for the night. That night Johnnys pain came back. Early Thursday we packed suitcases and went for another x ray & appt with our GI Doc. X ray showed gas trapped in bowel, at the top. Not throughout the intestines. We then were admitted Thursday. Johnny earned his tough guy badge. 1st iv, a 2 n- gtubes down his nose to suck out the yucky stuff. He had 2 because the first one they put in was too small. Ohhh worst part( we gave the n-gtube the night to work it's magic. No luck gas stayed trap. Friday afternoon surgery!! John did great! Result in simple terms there was a flap of scar tissue from his belly that wrapped around the intestines, and acted like a rubber band. Not allowing the gas to pass. Surgeon got that taken care of didn't have to cut his intestines. Surgeon also repaired A hernia he found in there. Saturday he recovered, and slept most the day. Today Sunday he is doing laps around the hospital. He is busy playing angry birds on my iPad. Sooooooo glad I have it for him now we just have to wait to have ng tube pulled, and start drinking/eating/pooping again. Trying are best not to pick up any bugs n here. His lungs sound great. Yeah!!! Very emotional to be back in this hospital again. Cried my eyes out walking him back into the same pre-op that he had his meconium illieus done as a new born. I think we are going to be so much tougher from this. Thanks everyone that prayed for our lil man. Can't wait to be home and be a family again. Missing my baby girl. Finding lots of appreciation for our cf team and family. Thanks for teaching me so well! I have yelled at rt's about reusing masks-washing hands. Thank you!

Love,

Sarah

 

[Ratatosk]

Sorry you're there, but so glad they figured things out. Hopefully you'll be home soon with your little girl.

 

[Rebjane]

Oh Sarah,

You must have been sooo worried. Hoping for a super quick recovery and to you all getting home soon. Sounds like things are moving right along.

 

[CJPsMom]

Sarah -
We went through the meconium ileus too and I can't imagine another tummy surgery (although we're now exploring a feeding tube...sometimes I hate going to the clinic). Definitely praying for you and your little man! I hope you're home soon!!

 

[kitomd21]

So grateful he's felling better!!

 

[SARAHSARAH253]

Update; ng tube out and iv out. Eating clear food diet. Peed 3 times, and now just waiting on the poop thanks again for all your prayers.

 

[Rebjane]

That's good news. Praying for poop.