Need to Rant!!!

[jandksmommy]

I am so frustrated! My ex-prem is now 15 months old, she was born at 23 1/2 weeks gestation so has significant lung damage from the early birth and 7 weeks of being intubated.

Over the last 2 months, she has been getting sicker and sicker. She will have all the symptoms of a cold virus plus a decrease in her oxygen saturation requiring oxygen support... then she would get better for a few days.. then right back to being sick.

I took her to both her doctors, had to rush her into emergency 3 times for O2 saturation in the low 80s even with her oxygen on. Everytime, I was told it was just a cold, not in her lungs, and to increase her oxygen and double her inhalers until the symptoms passed. No one would do a lung x-ray. Since she gets Synagis needles, they would not swab for RSV either. I finally took her to a respiratory therapist who took the time to assess her and was told to get her back to her doctor as there was something definitely going on in her lungs. The doctor read the RT's report, listened to her lungs for 15 seconds, said the RT was wrong and her lungs were clear.

6 days after this appointment, I am again rushing to the ER for low O2 and labored breathing to discover she has double pneumonia and her lungs are in so bad of shape that they are airlifting her to a children's hospital 3 hours away. Multiple test and we discover that she has RSV! We stayed in hospital for 8 days, until we got her oxygen requirement to 1/4 liter so that I can manage it at home. Her lungs have taken a big hit and she now needs to remain on a 1/4 liter oxygen 24 hrs a day until spring.

I know RSV is an awful virus for our preemies to get but I can't help but think that if the doctors had just listened to me at any one of the 5 times I took her in over this 2 month period, maybe she would not have gotten to this point. I am so frustrated!!! I knew something was wrong but what else could I possibly do? I kept taking her to see the doctors, I got a second opinion from a Respiratory Therapist, I asked for x-rays and RSV swab but was denied... I feel so helpless I could cry.

Sorry so long... just need to let this out.

 

[Foogirl]

Oh man, what a time of it. It is very frustrating when doctors don't listen and our LOs end up suffering harder and longer. Is there an option to change doctors? I'd not want to go back to them after that. You are right, you did exactly everything right, you did as much as you could. You shouldn't have to make a big nuisance of yourself to protect your child. And I'm sure doctors see mothers all the time who are overly protective and think their child is really ill, but when you've had a 23 weeker, is there such a thing as overly protective?

I hope your LO gets stronger soon and manages to get past the poorly season with no more infection.

 

[Foxybabyhg3]

Oh no! What an awful time you guys have had. I'm impressed that you didn't punch the doctors that dismissed your worries. Momma knows best. Wishing LO a speedy recovery

 

[jandksmommy]

Thank you both so much. I won't be taking her back to her pediatrician as he was one who completely dismissed the RT report and then told me not to bring her back until her 18 month check-up. Unfortunately, we live in a rural area and the next closest pediatrician is 200km away. Her pulmonary specialist is so booked that we can only see her about every 4 months. I am going to ask my family doctor is she will just take over my daughters care and I think from now on, I will just refuse to leave until they x-ray her lungs if I believe she is in trouble. I will simply have to be the over-protective stubborn mom they assumed in the first place!!

 

[Simonecah]

I might consider looking into taking some kind of legal action. Surely that s negligence. I'm so so sorry. I completely understand your frustration.

 

[jandksmommy]

Spoke with my GP today and she has agreed to take Reese as her patient so we will not be seeing the pediatrician again. I love my doctor . She has promised to listen to me and not rush her assessments when I have a concern and I promised to trust her judgement. She has been my doctor for 20 years and I have faith in her.

 

[Foogirl]

Great news!