SOOO LONG, I KNOW

I know it has been ages since I posted, but honestly I don't have time anymore. I'm so full with doctor's appointments, pta things, and just being a mom that I don't have time to sit down and blog a while. I apologize, but once you finish reading this post it may clear some things up for you.

Where I left off, November 18th 2009 Anthony had a Bronchoscopy done, no big deal. It would check to see if something is not formed properly which would cause aspiration (Which we have been fighting for 2 years now). Anthony did very well for the procedure and we went home about our business later that afternoon. The doctor sat down with Chris and I after the procedure an said

Doctor: "Ok Anthony did great you should be ready to head home shortly. Everything looked normal and I see no reason why he aspirates. I expect to get the "Washing" results in by Wednesday of next week and then we will go from there. If the results are abnormal we WILL be talking again very soon, if not I'll see you in 6 months."

Me: "Well what is "washing" what would that show?"

Doctor: "It would show whether or not he is aspirating food"

Me: "Oh yeah, he isn't. I'm not worried about that...(laugh)"

Chris:"Yeah, he isn't. So we will probably see you in 6 months."

Doctor:"Sounds good. I'll talk to you soon."

I get a phone call on Wednesday November 25th early in the morning like 10ish.
Nurse: "Mrs. Saperstein, this is (blank) from Dr's office. I'm calling to let you know that the washing shows that Anthony IS aspirating food."

Me: "What?!? So what do we do now?"

Nurse: "The doctor is working with Anthony's GI doctor and we will have a plan soon"

I was freaking out to say the least....My baby boy has been having food go into his lungs for 2 years and I didn't know?! No way not possible, but ok we will figure out a plan no big deal.

Since this was the day before Thanksgiving, we didn't hear from anyone until Friday. Friday they tell us that we need to meet with a surgeon and set up an appointment for surgery....They (the GI and Lung docors) recommend a procedure known as a Fundo with a G Button.

So in the meantime as I'm researching this surgery, I realize this is for acid reflux children, well see ALL the tests ever done on Anthony for reflux have been negative. He doesn't have reflux, we've had an upperGI, 2 24hr ph probes, nothing showed acid reflux. Yet the doctors wont budge the surgery will happen. We talk with the surgeon and forge on with their plan and trust that they know why they are doing this. Their point was with no reflux this will still reduce his aspiration by at least 50% and we had no choice but to agree with that.

So about two weeks later comes surgery day. Our families were there and we were all ready for a one to one and a half hour surgery. Well every hour the nurse called to tell us he is still in, maybe one more hour and we should be done. 3 hours later the surgeon comes out.

Surgeon" Well Anthony did very well. However, there was a Hiatal Hernia which we were not expecting (Because EVERY test done showed there was NO Hiatal Hernia) Therefore his stomach was in his chest."

Us" In his chest?!"

Surgeron: "Yes, and we had to move the stomach back down to the correct place and fix the hernia to continue. He should recover just fine."

After two days in the hospital we went home and it has been a struggle ever since. We came home with iv pole, feeding pump, tubes, gauze, syringes, medical tape, feeding bags, formula for the G-button. We became nurses in 3 days...haha Seriously!
He is currently on 4 feeds a day each is 8oz and we will work up to more. Nothing by mouth. Why you ask? Oh because ever since surgery he chokes on anything that goes down. Yeah wonderful...We are working out a plan to go back in a loosen the Fundo a bit, bcause it is too tight. That should be sometime in January. So until then nothing by mouth.

In between all of this he had an appointment with the Nephrology doctor for his high blood pressure. He says indeed Anthony has high blood pressure (Thank You!) and they want to do lab work and urine tests. So away we go no big deal. I've been fighting since April for a doctor to tell me yes this blood pressure is too high for a 2 yr old (we are talking sometimes it would be 125/80 or 116/50) no one thought this was a problem. Now they do! Well we got a phone call on Wednesday (seems to be a good day to give bad news for doctors)
Nurse" Mrs. Saperstein we have your sons blood work back and the doctor wants to do some further testing."

Me:"Ok sure, what does this abnormal test indicate?"

Nurse:" Well I'm going to use a big word here..
(pause for a few seconds) Tumor."

Me:" A Tumor?!? On his kidneys? Could it mean anything else????"

Nurse:" Usually not, no. So lets go on with these tests and talk again. This could be a false positive."

So that leaves us at today we go in at 2:00 and then again at 3:00 for some ultrasound testing on his kidneys. Please pray for my baby boy this afternoon. This is the last thing he needs. He has been through soooo much!! I'll try to post afterwards the results. The best way to keep in contact with me is facebook. I can update that from my phone. My email is ashleysaper@gmail.com.

Also, while we were in the hospital my mom had a talk with a social worker about our situation (Chris being laid off on top of Ant's problems) she was very rude and unwilling to help, but a volunteer overheard my mom talking and asked her to wait a moment he had someone he wanted her to talk to. My mom talked to a wnderful woman who is a child life advocate, her daughter has cancer and they lived in the hospital for 2 years. She listened to my mom's story and she came up to our room, without Chris and I knowing, and gave us Christmas for all three kids, meal vouchers to use while in the hospital, and she just talked with us for a couple of hours. The social worker happened to come in while she was there and she was of course very nice. She told us she would try to work on our problems. The next morning, we had another set of gifts for all three kids, and $400.00 in walmart gift cards. Oh and did I mention that there were two families that wanted to help us out? Yeah they paid our water bill and power bill for two months. It was amazing to say the least!! I'm so blessed to have been able to receive that. It made our Christmas worthwhile. Ant's surgery was 8 days before Christmas and we had no money to buy Christmas presents, we did not know what we were going to do, and it was heartbreaking. I encourage all of you to donate to a local children's hosptail whenever you can, you never know when that could be you needing it. I know I will be giving back as soon as we are able!!