This morning we met with the dietician, occupational therapist, and feeding specialist. We have met once before with the feeding specialist who seems to be a very educated and helpful lady. I told her all about our past few weeks and she asked tons of questions. She too feels I should seek another pediatrician, which made me feel better to think I wasn’t just overreacting.
Arianna weighed in today at 18 pounds 4 ounces, which is a weight gain of 1 pound 4 ounces in 1 month. They were all very pleased and shocked at the increase in weight. We did some feeding time with Arianna to show them how well she was eating and they were just in awe at how much she ate. The OT and dietician are going to write a letter to the pediatrician and GI doc explaining to them that the eating has been a significant problem and ever since putting Arianna on the oxygen it has helped dramatically with this. I feel like these women are really trying to help me advocate for Arianna. To be honest with you they seem like the only ones that think this is a big deal.
I have put a call into the peds office to schedule a consult visit with a different doctor. I’m hoping this doctor will be more involved in Arianna’s care and not push things off like our current one does. I am so upset right now and irritated with the care of our current ped I was in tears just talking about it today.
Oh yeah, then to top it off I get an email from our cardiologist telling me he is not scheduled at the clinic on the 20th, which is the day we are scheduled to see him. I called to reschedule for the 27th and they are totally booked. I am waiting on a call back from the cardiology nurse to explain my situation and see if there is anyway they can fit us in. I do not feel comfortable having any other doctor see Arianna with all that is going on.
So today I am completely irritated with the medical profession and really wanting some answers. I have taken Arianna off oxygen at different times today to get an idea of how she does off oxygen and her sats are running at the same numbers they were when we first got this darn pulse ox 3 weeks ago. So what does this tell me….NOTHING!!! We still don’t know why she would be low to begin with. No one has answer and I’m getting more irritated as the day goes by. I just can not stand this darn oxygen on her anymore. She is walking all over the place, or should I say trying to walk but constantly tripping over some kind of cord. I really pray this doesn’t turn into a permanent thing. I know a lot of people have it a lot harder. I should be happy at least we didn’t get the feeding tube but I’m just in that kind of mood today that everything seems to be bothering me. Thanks for listening to me vent and hopefully my next post won’t be so down.
4 comments:
Vent away if you need...sometimes that's all us mommies need to feel better! I'm so sorry you are battling the docs...that is definitely an added hassle you shouldn't have to deal with...maybe the new one will really take a vested interest in the cutie pie...who couldn't!
Hang in there with the oxygen...maybe it's just a little hurdle to get her well on her way to gaining more weight! Sounds like it is making a difference already...and knowing heart kids...the tubes and wires probably don't bother them as much as they bother the mommies!
Hang in there...sending lots of blistery, cold, snowy hugs!
Oh Vanessa, I hope your irritation with the medical profession doesn't last too long, we're human too! Honestly though, I think you're making an excellent decision by finding a new pedi. I can sense your frustration in your post today, that's perfectly natural under the circumstances. I really really hope and pray that you get an answer about this O2 thing, that has to be driving you crazy! I'm a family physician, so basically I see everyone, that is, except my own kids! I try to avoid being doctor for my kids, but end up treating a lot more at home than an average parent would.
On the other hand, it's awesome that Arianna has gained weight so well this month, it was so good that you and the OT and dietician pushed for a pulse oximeter. You're doing a wonderful job, and don't let anyone tell you differently, especially a crazy pediatrician who is probably too busy or rushed to take the time to listen to you.
Don't worry about venting. It's a necessary part of this journey sometimes!
I'm so glad you're looking for a different ped. I definitely think the other one wasn't a good fit for you guys. I have days when I get frustrated at the medical world, too. I guess it's inevitable when you have so much contact with them, huh. :)
The oxygen thing is frustating, but I think Krista is right. It may just be a hurdle that allows her to gain lots of chub! I hope you can find some answers soon. Yay for the good eating, though! That's great news!
Take care. xoxoxo
Hi Vanessa. I have not read through the entire blog, or even come close yet, but I will make my way sooner or later. I wanted to thank you for your sweet words on my personal blog a couple days ago.
You have an adorable daughter! I am going to get all caught up on you guys! It sounds like Arianna has a lot of weight issues too...Micah is still a measly 18lbs 5 ozs and he is almost 19 months old! I struggle everyday with that darn weight.
I am glad that you are getting a new pediatrician...I swear by mine...he is one of my kids biggest advocates and never thinks I am crazy for wanting him seen...as a matter of fact, he wants to see him even when I don't think he needs to be seen. I always tell people that the pediatrician is probably the most important of the doctors since they are the ones who are suppose to "know" our kids the best.
I cannot wait to get to know you better.
Heart Hugs,
Samantha
www.caringbridge.org/visit/micahmajor
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