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Nov 17, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Jedd's mom
Did you see my reply in Kats post about impedance? We are leaving tomorrow and now I am really wondering about it. Thanks!
Nov 17, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'M SOOO SORRY!!!!
I'm sorry. It may be easier for you to stay IN the hosptal for it. You will get NO sleep if you go home However, the results should be more accurate if you do go home/to the hotel. It's a tight spot to be in.

If you stay in patient, try to let him be himself, if that means climbing the radiator and looking out the window all day long like Jedd did, then so be it. Let him play and be as normal as possible. The staff s hould work with you. Try to stay to as normal of a schedule as well.

If you do go home/hotel, are you having anyone go with you so that you can take shifts. It's really hard I've heard to stay up all night long and record everything. You don't want to sleep through anythign that happens during the night because you fall asleep due to shear exhaustion.

Also, the risk you run into with going home/hotel is that the tube can get yanked and then the test ends.....or you have to go back and have it reinserted. Depending on the time frame that it was in.

Jedd had an NG and he almost got his Probe out. It was close. I was used to a tube being down Jedd's nose because he had had the NG so I knew what to look for in his behavior that told me he was close to yanking it. I literally caught him red handed and saved having to have is shoved down again.

If you do go home, please please have them do a super duper tape job on him. Look at Jedd's photos, I'll try to put togethr a photobucket slideshow. But bascially, we taped over and under JEdd's nose AND in front of his ear. Try to get the tape as close to the notril's opening as you can. They will get their little stinker fingers in their and then pull and out the tube comes before you can say NO.

Also since he has never had an NG or other tube down his nose long term, he will be more suspectable to puking it up and out his mouth. So then the tube will be taped done to his face but the end of it will come out his nose.....

IF that happens DON"T PANIC!!! It will be hard NOT to panic but.....just grab the tube at the nostil and yank it out FAST as fast as you can. Unitl you yank it out while it is in that position, the child will gag and retch. Physically they will not be "hurt" but they will be super duper uncomfy!!!!

DON'T yank at the MOUTH and try to pull it out, that's the WRONG way!!!!!!It must go in the nose and out of the nose, one way only.

Really there are benefits to both. But if I had to choose, I'd choose slep and beign right there if I had any issues. Btu liek I said, it's more acurate if you go home because the child is not as restained in their activities.

Off to try and post a slide show of some good tape jobs for you. I'll put it on this thread for you.

Nov 17, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Here is a link to a pic from his first probe at the same hospital. I felt like it was taped well. If you click the pic you can see it big. http://schiwartfamily.blogspot.com/2008/10/coopers-first-ph-probe.html
Nov 17, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
When I asked about staying in the hospital as we had before, they wouldn't even discuss it with me. I figured it might be an insurance issue. They said he *would* go home. So unless he has any issues during and after the scope, we will be staying in a hotel. My mom will be w/ me, and my aunt some too. DH has to get back after the scope for work. So will they only read when I say he is refluxing on the machine? I have a much harder time judging the reflux these days. I am worried we won't get accurate results. I am feeling much more nervous this time around than before. Urg!
Nov 17, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
YES!!!! That was a GREAT tape job!!!!
He is older now, so his fingers will most certainly roam more....:(

That tpe they used on Cooper and on Jedd was either called Tagaderm or Duoderm THAT;S the tape you want. The tape you will see on JEdd's NG tape jobs is called Hypafix. It's acloth tape that is breathable for long term use on a hcild's face. You do NOT want that tape. One tiny wetness and it will come right off.

If you notice in Jedd's Impnedance pictures, we had to add some hypafix of mine to his face to keep it on better and we had to add a piece (tagaderm) OVER his nose as well. All that was after he almost yanked it. I only had hypafix on ME, so I was already taping him as the nurses were running in. I had to do some thing. My MIL was holding down Jedd per my instrucutons.

I'll put the slideshow on the next post. Watch the end, you'll cry, I did.....

Nov 17, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Nov 17, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Oh Jessica, he looks wonderful now! Isn't it amazing how far they have come!? I know that this is so important and we have to do these tests, but I am worried about being at home/hotel. Thanks for your help. We will tape him up good! LOL!
Nov 17, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
((((HUGS))))
I really think if you tape him up good, it will go well at home/hotel. You just won't really get to sleep. That's what is so nice about beign in the hospital.

Are you traveling for it or ahving it done near to home????

Check with your
doctor first!