Sunday, February 15, 2009

What do you do?

I am in a situation that I wish I could figure out on my own, but hey Im a middle child and desition making has always been difficult. My coping method has always been to take a poll. So I have come to all of you with this heavyness that I carry.

When a doctoer tells you that he/she does not know what else to do for your child what do you do? (besides cry) It's more complicated... the're only 3 of these specialists in Utah. The other 2 are married and from what Ive heard not that great. I know I am taking Jonah to the Best here, but there is no answer for us. Do I go out of state? (I've had to quit my job to take on my family so we stuggle month to month as it is.) I just don't know what to do. If you have any answers please share. We are desperate.


Melissa said...

So what is the problem exactly? What is his diagnosis and what are they telling you exactly? I know a bit of what you have told us about your story, but I am not sure I know everything. As for going out of state... I have mixed feelings on that one so that is why I wonder what your story is. I am so sorry you are dealing with this. I wish I could help you out more.

Jessica said...

His diagnosis is chronic lung disease. He is constantly weezing and already on every medication for this issue. The big problem is that he is still weezing, so last thurs he went in for labs to test for allergies. well the results came back and he has no allergies. The doc wants to flush out his lungs and to do that he will have to be put back on a vent. This kid has been on so many ventalators (thats why he has the Chronic Lung Disease) Flushing his lungs may not do anything for him. And I am extreamly uncomrortable with it. I am also terrified that he might not be able to come back off of the vent, due to his poor lungs...uhhh I just feel sick. I have done research and have found a children's hosp. in seattle that ranks #9 in the country for Pulmanary issues. I love our Dr. and dont want her to be upset, because we do still need her reguardless of going out of state or doing what she has recommended

Liz said...

I'm sorry that you are going through this hard thing.
I can only tell you that we too have been in hard postions with our children's health issues, but I don't know that I can tell you what is best for you.
But, please don't ever worry about seeking out other advice or 2nd opinions from other doctors in the field. You are putting your child first, and good doctors don't have a problem with that at all. So, don't let that bother you. Especially if the one you are seeing now feels that she can't do much more to help.
All doctors have different levels of experience even within the same field of practice.
We have had to seek out 2nd opinions and further help for our little girl from before she was born w/ neurosurgeons, and in the last year when we were getting no where with our first gi doctor after months of continued problems. Changing to a new one brought a diagnosis for her eating problems, and no weight gain for over a year. And we are finally making some progress.
I know that my problems are different. And that the lung issues are really scary and difficult.
It is so hard to know what to do, but my feeling is that you won't regret getting a 2nd or 3rd opinion.

tiptoe mama said...

I agree, I think you just need to follow your heart. It can never hurt to get a second opinion can it?
Hang in there, and good luck. We'll keep you in our prayers.

Jessica said...

pheww! So the Dr. called me today and i voiced my concerns and guess what? She agreed with me. (she is so great!) I then asked her if there was someone else she could talk to about Jonahs illness and guess what? She is reffering us to denver, Co.

I am always amazed from the power of fasting and prayer. Also a big happy thank you to all of you!

Nancy Brown said...

I am glad I came by. I am glad you got are getting a second opinon. Honestly I would get one and would go to the end of the world to get it.

What about NEHI?

Jessica said...

Nancy what is NEHI?

Anita Nap said...

I have to get you in touch with my friend Rhonda. Her son was a preemie and his lungs have been BAD!!! They went to Colorado to the hospital there. They did all kinds of fundraisers to raise the money and she says it was totally worth it!! Email me and I will get the two of you connected. Or I can email you just to make sure you're still looking for answers on this post. Sorry, I'm always late.

RhondaLue said...

Jessica I'm Rhonda, Aprilyn's friend. She told me about your son. One of the highest ranking hospitals in the world (and for sure #1 in the US) is National Jewish Research and Medical Center in Denver Colorado. If you're being sent to Denver I suspect that is where. Nobody offered it as a suggestion to me but after 5 years of living in desperation I found it myself.

#1 BEST THING I EVER DID. My son is like a normal kid now when we were CONSTANTLY in and out of hospitals prior to our visit. It was a 2 week program where they have all the specialists look at your son together. My son should never have slipped through the cracks here at home but he did. And those Drs at NJ are TOP-NOTCH. Insurance paid for a very good portion of it and we ended up doing fundraisers for the rest and the travel expenses. That was 2 1/2 yrs ago and we've not had one more hospital admission SINCE.

If you need more info contact me on my blog and we can exchange emails! GOOD LUCK!