Sunday, April 25, 2010

Please God, give me the strength to..............................

I have not updated my blog in almost a month. Life has been busier lately than it ever has been in my opinion. But, who knows, maybe I am just too tired to remember the other "BUSIEST" times.

We seem to spend many days at Children's Mercy Hospital. I have to say that I truly am getting sick of that place and Miss Faith asks, every time we get in the car....again Mommy? Yes, again baby. :(

Here's kind of what the past few weeks have looked like for Lil Miss Faith:

2 trips to 2 different emergency rooms

a ct scan of the pelvic and abdominal area

received a set of hearing aids (YAY!)

11 different appointments at the Children's Hospital between the ENT, hearing and speech, hemoc, and pre-surgery testing clinics

Removal of tonsils and adenoids along with removal of an ear tube and patching of the hole in her ear

an overnight stay in the hospital after surgery

many sleepless nights due to the pain from her surgery.

Really, in general we have had enough! I don't mean to whine, but I thought life would be easier for Faith. I so desperately wanted life to be easier for her once we adopted her. I want to stomp my feet and scream, IT'S NOT FAIR!!!!!!!!!!!!!!

In my opinion, once you have lived 5 years of your life in a poor country without proper food and medical care, you should get a FREE PASS to an EASY LIFE! I know this is not how it is, but "I wish I may, I wish I might" take all her troubles away.

I wish I could say that all the doctors we have run across in the past few weeks have been kind, compassionate, and have listened intently while I have addressed my concerns of Faith's health issues.

NOPE.....NOT THE CASE! These are just a few samples of the words I have been told by trained medical professionals during the last few, long weeks:

During the blood sugar of 337 and abdominal pain at the E.R. we heard :Your daughter is fine. We wont draw labs or take urine, just have her go home and rest.
I have been a doctor for 27 years, 27 years, 27 years (YES, he said this three times!)

After Faith's surgery I expressed a concern to her hematologist regarding her hgb that has been dropping rapidly over the past month even with the transfusion 6 days prior to surgery.

Her hem/dr tells me that we will sit done and "discuss" things on Monday, which was 5 days from the time we talked. Good thing she doesn't need blood to breathe, think, live and maintain function to her vital organs between now and then huh??

Now, this is the chart topper! Last night, after Faith was acting lethargic, looking yellow, (which usually indicates she needs a blood transfusion)and I could not seem to keep her pain from surgery at a bearable level for her, we called the Nurse line at the Children's hospital and then headed to the E.R.

The e.r. doctor(Her name was Dr. Shizzle, so if you happen by CMH and get her appointed to your child just yell out....NEXTTTTTTT!)was not kind. I explained what symptoms Faith was having and that also I was concerned about the amount of pain she has been in. We have not been able to control her pain level and are up about every 2 hours in the night, which has been difficult to say the least.

She said, and I quote, " Her pain seems bearable to me, because kids that do not have good pain control will stop breathing, she is obviously breathing, so her pain is controlled.

Yes, I was appalled too! I shot her a look and she said WHAT? I teared up and said, "nothing," it really did seem pointless to even open my mouth. They don't seem to be listening lately anyways, so what's the point in speaking? she said, "Well, it must be something that you don't agree with that I've said." GEE YOU THINK< CAPTAIN OBVIOUS??? Tomorrow we will be meeting with her hematologist. This is the hematologist that stormed in last week when Faith was admitted after surgery. He had his Nurse Practitioner and Social Worker in tow, to basically tell me that I have been emailing and calling him too much, so he would like to meet with us to "DISCUSS THINGS." OH DEAR! These are just a few of the replies I spit out when talking to some of the medical professionals over the past few weeks: I don't care how many years of medical training you have had, I know my daughter. And my Mommy Knowledge trumps your years of medical school when it comes to my child! You think I am a CRACK HEAD (Yep, that's one of my classy rebuttals!) and think that I have nothing better to do than to make up illnesses or symptoms for my child, when, in all actuality I would rather be home baking cookies for all 5 of my children than living in a hospital with my daughter. We do not deserve to be treated this way! Faith deserves better! I am NOT here to make friends, I am here to ensure my child get's the proper care! My saying now is, you can mess with the Momma Bear, but if you mess with the baby bears, you will get the CLAWS!! Please pray for these things for our family if you somehow happen upon this page: Prayer for Faith as she struggles to just feel like a normal little girl. Prayer for Bill and I as we talk to Faith's hematologist tomorrow. Please God, give us the right words to advocate for our child, not the spiteful or hateful words in my head, but the words that will get us answers and will help Faith's health and well-being in the long run. Prayer for financial assistance from organizations or state funded programs to help with the co-pays for Faith's medications. Prayer for gas in our cars for the many trips we make to the Children's hospital. Prayer to keep food in the cupboards as we struggle to stay afloat. Prayer for airline money to fall from the sky for Faith and I to take Faith to the Beta Thalassemia Major Specialist at the Cooley's Anemia Foundation on June 29th in Chicago. This is a huge portion of my stress. Please just help us get there Lord where we will be able to find out many answers to Faith's issues and see inside her body to see if the iron overload has caused damage to her organs, especially her heart and her liver. Prayer for me, yes, I'm asking selfishly. I am struggling to get through daily life as I am sleep deprived, full of anguish and fears for my daughter, and worried about the daily financial needs as we care for Faith in that best way that we know is possible. Faith has had many difficult days lately. My heart yearns to buy her a play-doh ice-cream making set, a new barbie, or a SUPER SIZE FULL OF LIFE PONY every time they poke her for blood or we have to do another form of treatment. Finances will not allow these things which adds to my heartache. No, my child does NOT have cancer, but she does have a chronic, life-long blood disease as well as other significant health issues and she is drained these days. I am going to try something and I need your assistance please. Although it is hard for me to be receiver, I am in a place where I have no choice but to do anything but receive. I used to be a giver more than I am these days. Not because I don't want to give, but I just cannot because the funds are not there as they used to be because of Faith's medical needs. I think that God sometimes places us on both sides of the giving/receiving fence so we know how each feels. I have found this to be very humbling. Here is where I need your help please. Would you be so kind to send Faith a card in the mail or an email to Faith through my email address that I can read to her? She loves to get mail and I think this would make her feel very special and make her O SO HAPPY! My email address is to send a card in the mail to Faith please send it here: Faith Rockhold, P.O. Box 234, Lexington, MO 64067. I have also added a "Paypal" button in case you would like to "GIVE" to Faith or her medical needs. Faith is an awesome little girl and we feel so blessed that she is our daughter. Please pray over us with our many needs. Hopefully, we can return the favor very soon.

Much Love,
Faith's Momma