Hi ladies, I don't know who to turn to anymore. LO has been on O2 since birth. (He was 41 weeks, so not a premie.) We have seen numerous specialists as to why he isn't getting better. But We seem to be pawned off to the next Dr.
I'm just looking to see if any moms have had a LO with an illness and how you are dealing with it? I'm so frustrated and sad and just want him to be healthy. Thank you
@cait7425 thank you for your warm thoughts. They tell us he has obstructive sleep apnea. But we fail our pulse ox tests every other week. We can't bring up his levels. They don't have an anwser for that
Have they already referred you to a pediatric cardiologist? Could be symptomatic of a congenital heart defect.
Sorry you guys are going through this, my LO had surgery this past week (it was comparatively minor) but damn, medical issues with a baby are terrifying. Prayers for both of you.
My DS was on O2 for two months after birth because he couldn't pass his pulse ox test. The theory they gave us is he inhaled amniotic fluid during birth and it just took him longer to clear it. I'm honestly not sure if that's the case. I had a long labor and ended up getting pitocin and an epidural. I have no solid proof, but I wonder if he had complications with the pitocin. He eventually grew out of it, but it was a challenging couple of months. My thoughts are with you and I hope you find answers soon.
Much love and hope being sent your way. I'm sure it is very frustrating to continue to go to new doctors and get no answers. I'm sure you've already been referred to a cardiologist as well as a pulmonologist. Have you been able to consult with one of these specialists in a 'Children's' hospital? A friend of mine had a daughter that was severely ill with an infection that was successfully treated at a Children's hospital. I know they have them in major metro areas. You've probably checked into this already, if not already have gone.
I wish I had more information to offer, but know that my thoughts are with you and your LO. Please come anytime to share your frustrations or just get a virtual hug
No experience or helpful advice either but wanted to send our thoughts and prayers that everything resolves and turns out okay for you and your sweet little guy!!
My first child had obstructive sleep apnoea and laryngealomachia (sp?) we had a very frustrating 11 months until he had surgery - he is doing brilliantly now. But it was so scary for a long time- no experience with O2 - mine was on steroids. But things changed for the better for us once we got into a professor specialising in ENT - I'm sure you have probably seen one, but perhaps you could get a second opinion from one with a particular interest in children's breathing issues.
My dr did warn us that unless your child isn't growing, most ENT surgeons are reluctant to operate on a baby - so that's what we had to wait for. My heart goes out to you - I know it's so frustrating and upsetting to have an unwell baby
A friend of mine has a son who dealt with this the first 4-7 months of his life. The Drs kept telling them not to worry and it was nothing. She finally took him to another hospital in another town (childrens hospital) and they were able to diagnose it pretty quickly. It was very stressful for them as in sure you know. He's a healthy 1 year old now! Keeping you in my thoughts!
I don't have experience with this particular problem, but I'm another mother who had a great experience after going for a second opinion at a Children's hospital. We didn't have one in town but it was absolutely worth the drive.
So sorry you are not getting answers. I agree it would be worth going to a children's hospital even if you have to travel a bit to get there. It's hard having any medical problem but I can only imagine when it's a problem with your baby and you don't know exactly what's going on & what to expect in the future. Thoughts & prayers to you & LO.
This must be so frustrating for you, I'm so sorry. I wish I had some experience but I just want you to know we're here for support/venting/anything. Your LO is beautiful by the way! Hope you get some answers soon, mama. Hang in there.
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I'll be honest, I've always wanted to know what was going on and I was afraid to tell you I think about your poor LO sometimes. I hope you guys get some answers soon! I'm with melly on that hug.
Thank you all for the love and prayers. It means more than any of you can imagine. To date we have done an echo, blood work, chest X-ray, sleep study, seen a pulmonary specialist and and ENT. We have been to children's twice. We have an option to do a cat scan and a bronoscipy. We aren't keen on doing those because we have to put him under. But we are at the end of our rope. Thank you so much again!! This has cheered me up!!
@magono20 have the drs mentioned removing adenoids and tonsils? Our little guys OSA improved six fold by having that done (he also needed something done to voice box/ windpipe)
@sarahairsair one specialist talked about it but they would prefer to wait to see what happens when he is a little older. At 11 months did you make the decision or did your Drs say it had to be done then?
Our drs conferred and agreed it had to be done - but only after he didn't grow for five months and we had the sleep study results, I'm glad they made it easier by saying the risk of not doing the surgery far outweighs the risk of doing it- I kept repeating that in my head when I got worried about it.
Not gonna lie- it was hard (hard doesn't even cover it) but he is thriving now If there's anything you want to know feel free to pm me- the process might be a bit different as I'm in Australia but I'm happy to answer anything Oh and insist on a hearing test when it can be done - one of our pedi kept pushing and I fought against it because I was adamant my son could hear me just fine and daycare said no way has he got hearing issues.... Well moderate hearing loss in both ears to the point where it would have impacted on speech and development- so I'm thankful that dr insisted, we were able to have that fixed during the same surgery - sorry long rambling post
Re: Coping Support
Sorry you guys are going through this, my LO had surgery this past week (it was comparatively minor) but damn, medical issues with a baby are terrifying. Prayers for both of you.
I wish I had more information to offer, but know that my thoughts are with you and your LO. Please come anytime to share your frustrations or just get a virtual hug
My first child had obstructive sleep apnoea and laryngealomachia (sp?) we had a very frustrating 11 months until he had surgery - he is doing brilliantly now. But it was so scary for a long time- no experience with O2 - mine was on steroids. But things changed for the better for us once we got into a professor specialising in ENT - I'm sure you have probably seen one, but perhaps you could get a second opinion from one with a particular interest in children's breathing issues.
My dr did warn us that unless your child isn't growing, most ENT surgeons are reluctant to operate on a baby - so that's what we had to wait for.
My heart goes out to you - I know it's so frustrating and upsetting to have an unwell baby
Good luck!
To date we have done an echo, blood work, chest X-ray, sleep study, seen a pulmonary specialist and and ENT. We have been to children's twice.
We have an option to do a cat scan and a bronoscipy. We aren't keen on doing those because we have to put him under.
But we are at the end of our rope.
Thank you so much again!! This has cheered me up!!
Our little guys OSA improved six fold by having that done (he also needed something done to voice box/ windpipe)
Not gonna lie- it was hard (hard doesn't even cover it) but he is thriving now
If there's anything you want to know feel free to pm me- the process might be a bit different as I'm in Australia but I'm happy to answer anything
Oh and insist on a hearing test when it can be done - one of our pedi kept pushing and I fought against it because I was adamant my son could hear me just fine and daycare said no way has he got hearing issues.... Well moderate hearing loss in both ears to the point where it would have impacted on speech and development- so I'm thankful that dr insisted, we were able to have that fixed during the same surgery
- sorry long rambling post
I thought this would be the best spot to put this but I always think of you and your LO.
I'm super excited to hear about the oxygen being reduced.. Does that mean the doctors have figured out what was causing him the issues?