Jeremy's Jurney

[Brookestream]

Wow I can not belive that the hospital staff doesn't tell people about websites and boards like this when you have huge life changing things like tracheostomys in your babies and possibly stuck to vents looming in your life. Jeremy was born 6,5,2006 was trached on Aug 10, 06 and removed on 12,29,06 we finnally got to go home on 01,10,07. His stoma closed nicely and by 06,15,07 feeding tube was kept out after he pulled it and we have gotten him to eat without it. He also had oral aversion and gastrosophageal reflux. I wonder with those of you who have watched your children learn to eat and swallow do they struggle with swallowing certain things, can there be narrowing after a while or does my guy just still gag because of textures that are in his throat. Sometimes he will act as if its not going to go down and then after trying and trying it all comes back up. My Daughter just the other day swallowed some bread and said oooh its not going down and then looked relived and said whew it went. I asked if this happened all the time to her and she said no just every once in awhile. She suffured from Eppiglatitise as a baby and is very small in her thoat area. She acted just like Jeremy when he is going to bring up all his food. Watery eye and everything. Anyway I am very glad to have found a board that seems to relate to some of the things we struggle with daily. Tell me what is a good
O2 level in your oppinions. Jeremy off oxygen sits at 92 doesn't that seem low to most of you. Cardiologist says it was ok to come off at 88. I wouldnt do it and we do not have a pulminologist that we like.

Brooke, Mom to six boys one a girl. Jeremy our miracle 27wkr/ previse trach, on 1/4 to 1/8 liter of oxygen mostly at night now. In past on all vents for 5months,on NOI for 3months. Hernia repair, Sevier Cystic BPD is still tiny but very busy.

[Topher's Mom]

Welcome Brooke. My son Christopher does not eat much orally & is still mainly tube fed. He has never had a problem swallowing although he only eats pureed foods. If you try anything too solid, he does gag. I'm know there are several Moms who can speak more to the eating issue. We have been told by Christopher's pulmo. to keep his oxygen sat at 92 or above.

I agree that it would be nice for hospitals to let parents know about these websites & message boards. It really is a big help & very supportive.

Karol

[faywrayy]

I would have loved to have known about this board when things with Kate were hitting the fan.

My daughter is pretty much weaned from her tube and I don't see any problem with her swallowing, but she never gagged on food, or had issues with textures. With her it was simply learning to chew and swallow in a timely manner.

I frequent a board for kids with feeding aversions and issues. You might find some good info there. Here's the link:

http://www.parent-2-parent.com/forum/forumdisplay.php?f=91

[alizesmom]

Welcome, I can't help with feeding issues since neither of my two eat but I agree with the 92% mark for starting/stopping O2 but I'm real alert at 94. Karen

[JWorthington]

Hello and welcome. Sam is on continuous O2 but we would be happy with him satting at 92 on room air. Sam has always had swallowing problems so is now completely tube fed, because he used to aspirate all the time, so can't advise you on feeding.

Julie

[WeAdoptKids]

90% for us, 85% if sleeping.

No eating here for our Joseph, for many reasons. He does not digest proteins so that is a biggie and then his swallowing is in the toilet, so they are not going for it. Sorry that I am not more help.

Welcome and glad you find us,
Roberta

[Isaac'sMomandDad]

I just wanted to say welcome!

Glad you found us.

Lara

[drct1245]

Hi Brooke,
I don't know much about the eating side (we are just starting to eat) - have they ever done a swallow study? I do know about O2. What elevation in Utah are you? If you are at any elevation around 5200ft, like Denver, then you will never obtain 100%. We were told for Ayden that 92% was on the low side - OK, but the didn't want him hanging out there all the time. They would like to see him about 94+. Does Jeremy act like he is having problems breathing when he is at the lower numbers? Ayden will start retracting and breathing harder when he is low. Because of that, we keep him around 94+.
Hope that helps - welcome to the board!!!

[Kaylie]

Its very nice to meet you and hope we all can be of support. we forsure understand all that is going on. i hope to here all about you and your family.please take care

[Brookestream]

Our elevation is 5584 so yeah I guess we might always have to have the back up of oxygen. He is very interesting around 6am he will pop up to 95 and sit and then as the day goes on he waves back and forth from the 92 to the 95 then towards evening he starts sitting at 92 and droping to the 90 by bedtime at 8:00 he needs the oxygen back on. Even when he sleeps in the afternoon he will stay around 95 but not during the night. I am sure it has to do with natural steroid levels in his body and of course we have to give him flovent twice daily.
Eating is easier and easier as he learns to do it on his own. We still have gaging moments it almost seems as if his throat has some kind of a closing moment like a hernia thats bad one moment and not at other times. He passed his swallow study with flying colors but that was done DEC 6 06 before his trach was removed. Do you think I should demand another one. They always think that his throwing up has to do with the reflux issues. He is on all the meds and it still doesnt seem to have anything to do with that in my oppinion. When he gets caughing and has more muscus build up it seems to happen more often. Thats when I wished I had a suction machine again even though he hated it.