Friday, March 16, 2012

Week in Review: Medical Standpoint

Tuesday: Specialist 1 (first time), Social worker, Nurses, Specialist 2 (S2 was cancelled, would have been our second time)

Wednesday: Ultrasound

Thursday: Occupational Therapy Consulation/Testing (first time, Jie Jie passed with flying colors so we don't need this), Physical Therapy (first time, yes, we are super glad to now have this), Get home at 1pm and the phone rings constantly, with call waiting, too, no breaks between, I am not exaggerating here at all, and I got off the phone at 4pm. I had Kaiser in a circus ring, each specialist and department calling each other trying to formulate a care plan for Jie Jie. I also found out the ultrasound result indirectly, when one nurse coordinator mentioned the result casually. I was glad to know, but wished it could have been delivered in a way that I had more warning. Referral to the local children's hospital went through so we can see another specialist since the one and only one of its kind at Kaiser is on my "Don't let him near my daughter" list. He's made WAY too many mistakes with me and her and one was seriously wrong medical judgement.

Friday: Blood draw/hep. lock, 2 MRI scans, Attempt to see Specialist 2 again, but it was, again, cancelled. Courtesy call from pediatrician to let me know that she is being contacted by all the departments and being kept in the loop, but when I knew the ultrasound results and she didn't and she said, "You know more than I do," I replied, "Don't say that to me, you're supposed to be the doctor!" She replied, "I'm only being honest with you," to which I said, "And I appreciate it." These things do shake my confidence in these professionals, however.

Next week, on the same day, is Physical Therapy, Ecocardiogram, and training for Jie Jie's new treatment.

Jie Jie does NOT have any symptoms that she has any heart issues, but it's routine to check when one has the conditions she does have, and I agree with this one wholeheartedly.

Then it looks like we have a two week break, unless something else is scheduled, then it's a consultation with the neurosurgeon. Thankfully, Jie Jie doesn't need the surgical services of this specialist, but, apparently, it is the specialist that one consults with after having a brain and spine MRI.

BTW, remember my post about whether or not to do the brain MRI? Since Jie Jie needed the abdominal one, I went ahead and had the head one done, too. That part only took 20 minutes. I saw the images and her brain looks very symmetrical and the ventricals look normal to my lay-person's eye.

This has been a LOT to get through this week. I reminded myself today, that no matter what I felt about it all, my tiny daughter went through it all, too, and while she doesn't have the understanding enough to worry about the diagnosis, she has the worry of it all being done to her body. Those two bad nights she had and the few tears she shed during the blood draw/hep. lock were the only down moments she had. She was cooperative and bubbly, though sometimes a little apprehensive, the entire time. She impressed everyone she met, and I'm still in awe of this little wonder who is my daughter.

Now, go back and watch the video of her dancing and tell me if you see a child who looks like she needs all this medical stuff? The delight of her in that video is what I live with every single day as her mother. Would I adopt her if I had to do it again? YES! Would I adopt another child with a special need? YES! But there is a but... It would be with totally new awareness of what my local medical establishment can provide. I strongly encourage all parents thinking of adopting a child with a special need to thoroughly, and I mean THOROUGHLY, research the type of medical care your insurance and area can provide. Be willing to move if you need to. Just click to read A Place Called Simplicity in the right blogs I read menu to see the lengths this family has gone to for their latest arrival.

Most of all, educate yourselves! Too little knowledge is dangerous, so is not enough since you think you might know it all and you don't. Get over that hump and do your research. GET CONNECTED! I was sooo ignorant about how my healthcare plan worked. My child is paying the price and it's a horrible thing to live with. On the other hand, I know more about her condition that most of the doctors we've seen and I've been their guide. BE ABLE TO ADVOCATE FOR YOUR CHILD IN ALL THINGS AND PLACES AND TO ANYONE!!! Honestly, the needle was a centimeter from my child's vein today when I had the nurse stop and wait. There were three nurses in the room ready to help hold my daughter down and I was able to prevent that from happening by knowing my daughter and myself and listening to myself and that panic growing within me that said something wasn't right and to take charge NOW! The specialist that is off our list is well-respected by all his collegues and comes highly recommended, but he made 5 errors, from small to great. My instincts came on red alert at our first phone consultation, which prompted me to call the center of excellence in another state that specializes in my daughter's condition, and get a second opinion that gave me enough information that lead to the domino affect that nixed him.

As I mentioned, my assistant/friend's 14 yr. old daughter was hospitalized last night for a ruptured appendix. She's been sick for a week, off and on, with what looked like a virus, but the child suddenly said that she needed to go to the doctor and my friend was going to do it the next day no matter what. She even said that when she saw her daughter sleeping the other day, that she looked dead. That was a prompting from God! Here's the short version. Her husband took the child to the ER at the children's hospital and met their practice's on call pediatrician there. That doctor said it was a virus and to take her home and give her plenty of fluids. Her husband, who at one time in his life worked in a hospital as an orderly, and who knows his daughter well, and isn't afraid to speak up to a person in authority, refused and told the doctor to look at her appendix. It became a battle, but finally, this father won. She came out of surgery today feeling and looking so much better! The girl would have died within a day or two for SURE if her dad had taken her home with that ruptured appendix!

I'll give you parents reading this the same advice that I gave my daughter today, "It's okay to be scared. But you can also be brave!" Don't be afraid to offend anyone or hurt their feelings. Remember, they work for YOU! Be reasonable and respectful and be ready to apologize if you make a mistake, but do NOT worry that they'll talk about you behind your back or treat your child badly or blacklist you. I was told repeatedly this week that I've done and am doing a GREAT job, that I have extraordinary insights and skills and that my daughter definitely came to the right mother. I needed to hear this from these professional so badly at this time because this is a scary new world and I don't want to be in it and I don't want my daughter in it, but here we are and I'm going to do my very best in this new world!

1 comment:

MJ said...

you are an inspiration.

it's scary how you can trust no one better than you can trust yourself and your instincts for your child.