Posted By Posting
Aug 09, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
trying not to freak out
Tomorrow is Lorenzo's pH probe and I am feeling a lot of fear and dread. More than worry about getting the probe in -- though that's scary too, given how much trouble they had last time -- I am worried about going through that and not getting any results, either because he pulls it out or they do something wrong like last time. I know we need to do, I know we will do it, but I am just feeling queasy, and not wanting to be in that space because I know Lorenzo will be able to sense my anxiety... Which is why I am here blathering on, to get it out of my system in the presence of people who get it and who care... So, for the 800th time in the past three years, THANK YOU ALL, THANK YOU PAGER, I don't know what I would do without you.....
Aug 10, 2010
jeddsmommy
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)))))
This is gonna sound hard but, make sure they swaddle or restrain him pretty well so they can place it as quickly as possible if they are not placing it sedated. A sheet or even a large towel can be used. All though I suspect they have done lots of placements and should get it in pretty quickly.

It didn't bother me to be in the room while it was done, I actually helped hold Jedd still, but I have placed dozens of NG tubes so watching a PH probe get placed wasn't bad to me....sad but true... :-(

If you think it will upset you, you can step out of the room and then swoop in really fast to the rescue!!!!!

I wouldn't recommend sedating and don't think anyone really sedates to place them unless other testing is being done at the same time that requires sedating.

Watch really really closely for those hands and fingers heading up to pull it out. After getting one placed the last thing you want to endure is having to place it again.

Ask them for arm splints or "no no's" to be put on his arms if he won't keep his arms and fingers away from it.

Talk to child life if you are having it done at the hospital, they can supply you with LOTS of things to do in the room to stay occupied and to keep his mind off of the tube in his nose.

Good luck!!! Will be thinking about you all the next 24 hours!!!

Aug 10, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Actually, we do what we call a burrito wrap on him a lot at home because of his SPD -- it helps immensely with his tactile sensitivities -- and I have already talked to him about how we'll do that for him tomorrow. The last time we had him wrapped up, but the folk placing it were, to be frank, incompetent. They put it in completely 3 times, and all three times x-ray showed that it was not okay -- the last time they flat out told us it was placed correctly and we found out later that that wasn't true and that it was in his stomach for 24 hours. I was livid.

Needless to say, we are not going to the same place. I always hold him for procedures -- I can't even imagine not, we have been through everything together the past three years... He's very advanced, and we talked a lot about it tonight, about what to expect, how it might feel (I tried to be honest without setting him up to assume that it will be painful or scary), etc. He listened and asked questions, and role played it with his hand puppet parrot. He's a stoic little guy -- that's been part of the challenge all along, as he won't tell me when he's hurting -- so I'm sure it will go smoothly. I just hurt for him because I know that no matter how he feels about it, he is going to do that heartbreaking stiff upper lip thing and then have either terrible insomnia or one of his stress induced narcolepsy type things... I sometimes wish he WOULD freak out and throw fits about this stuff....,p>Anyway, thanks for the advice and the thoughts -- I know you've been through much more with Jedd, and I know that every time Lorenzo goes through a tough procedure, I am reminded to live in the gratitude of a relatively healthy child who does not have more catastrophic issues...

Aug 10, 2010
dcd
Good luck today LorenzoMamma!
Aug 10, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Hugs to the two of you!! Wish I could be there to sit with you!! With you in spirit!
Aug 10, 2010
adelines mom
just reading your post and praying that today is going okay! please keep us posted. remember to BREATHE!
Aug 10, 2010
kavyamom
Good luck and will be thinking of both of you today. BTW I live in Campbell (near San Jose)...I think I read in one of your posts that you live in Santa Cruz. Do send me an email when you get a chance: sandhya.nagarajan@gmail.com so we can exchange doctor information, etc. Would love to know if you have a good GI.
Aug 11, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I don' t know how it is that I got so fortunate, but Lorenzo is just such a wise, calm old soul. He didn't even so much as ask for a drink of water this morning, even though after waking him we still had to travel an hour and a half to get the the hospital for the probe to be placed. He was pretty nervous once we were in the room, but he tends to handle that by retreating into himself. We swaddled him in a blanket and I held him on my lap while they placed the probe -- it didn't exactly slide right in, but it didn't take too long either. Lorenzo cried but didn't even struggle in my arms, and when I suggested that he try to take deep breaths he just said, "I'm going to cry" -- so I said I felt happy that he could cry if that's what he needed. At one point, when they were making minor adjustments and he just wanted to sit up, he looked into my eyes and said, "tell them to stop, please, I want to sit up." He was refluxing throughout the placement, poor guy, and gagged A LOT... We got into xray almost immediately and the probe was just where it needed to be -- I cannot tell you how relieved I was...

Here's the thing that just continually blows my mind about him -- he has only touched the probe wire in his nose once, with a touch so gentle and slow you'd have thought he was stoking a baby bird, and all day he has avoided putting his hands anywhere near it, even when his nose is running or he is complaining that it hurts, tickles or feels uncomfortable. Instead he talks to me about it, and asks me to do whatever is needed to make it feel better. I sometimes just feel like asking "who ARE you?" because I know I would have been tearing at that thing constantly when I was his age.

So now we just have to make it through the night without the probe coming out, which may be harder than the daytime since he is usually such a restless sleeper and is generally extremely confused when he wakes during the night. Then again, he is so exhausted he may not be able to move until morning....

Thank you all again for your advice and encouragement. We should have the results by the end of the week...

Check with your
doctor first!