Tuesday, January 27, 2009

Pity parties and surgeries

Well I finally had my breakdown day, it doesn't happen often, I'm a pretty easy going person. And the day started out great. We met with Rhett and his mommy at Red Robin for lunch. It was a blast. Just let me tell you Rhett is as cute in person as his pics. Of course I forgot my camera so hop over to her blog, thebirdflock, and check them out.
After we had lunch we headed to the hospital. First was our ENT appointment. We scheduled surgery for his tonsils and adnoids. There is not much they can do about his nasal airway, so we will see what that does for him. Then we went down for our upper GI. We sat in the waiting room for an hour. I saw the guy come out and take a baby that had just gotten there. When he finally came and got us I told him he passed us and took the baby first. Oh he was full of apologies, ha (can you feel the sarcasm?)
When we got the upper GI he immediatly began to reflux the die, so the radiologist hurried and sucked it out with the syringe. Well the nisson is not working, yeah (again the sarcasm?)
On my way out I called my doc's office to see if she wanted an NJ tube put down while I was still up there. An NJ bypasses the stomach and goes into the intestines so they can't reflux it. And it has to be done in radiology.
Well my doc is on vacation till tommorow, so the doc on told me to go to the ER for the NJ. I asked her why she just couldn't order it. Well she wouldn't. So we headed to the ER where we hid in the corner until our turn to go back so as to stay away from all the sick kidos. We sat in the stupid ER for 5 hours. I was starving, exhausted, and thinking as the minutes kept ticking away that I still had a 45 minute drive home. They gave him a GJ which just takes his G tube down into his intestines and we finally left at 10:00pm. But now he needs to have surgery to fix his nisson. So today we end up with two surgeries. Its amazing what these little hero's can go through and still stay strong. I'm hoping they will put the two surgeries together, but that will be a double wammy on poor Jax, it will take him a while to recover.
So when I get home at 11:00 I don't just get to go jump in bed. I have to get Jax jams on, his meds down, give him his shot, set up his feeds and hook his monitor up. Then I finally get to eat cold pizza while I write this blog to wind down. Then I think about how I have to get up in the morning and get my boys to school. There just going back from Christmas because they have been off track. So now I get to take my seven year old autistic son kicking and screaming to school. And he is upset because his schedule is changing again, and a normal school day is to long for him, but his school is not helping me at all on what we can do to help him.

In the morning I will wake up a happy camper again after this pity party tonight. I know God gave me two special needs kidos for a reason, and I wouldn't trade them for the world. So now I'm going to try to get my exhausted self to sleep,(and pray Jax sleeps all night) and then get up and do it all again.
Goodnight friends!


Junior said...

Wow, you had quite a day.
Hang in there
Big hugs

Unknown said...

Hello there, what a blessing to have found your blog! I found your blog through my friends blog who has a beautiful, awesome and inspirational some with DS. I think your family is just amazing and your little Jax just absolutely gorgeous! My sister's son was diagnoised with cancer (neuroblastoma) at the age of 8 months and has had a year of chemo, 10 surgeries and countless pricks and prods! And now at the age of 2 1/2 he has also on the autism spectrum. We are all new to this but Deqlan has been in theropy for a year and is now doing the diet (they are starting off slowing removing the gluten) and we are doing the picture exchange program...he is the light of our lives and just the most lovely boy! I am blessed with a beautiful little boy too - his name is Keaton and has just turned a year! I will continue to follow your blog and prayer for Jax and your entire family - it would be my honor! God bless! Megan du Plessis

Unknown said...

Forgot to mention we live in South Africa - so prayers across the globe for your beautiful family!

Cammie Heflin said...

Oh Lacey, I am so sorry, I wish there was something I could do for you. I will pray to give you strength, sleep and wonderful outcomes.

The VW's said...

I'm sorry that you had such a trying day! 5 hours in E.R.?! I can't believe that you had to wait so long! You deserve a massage and much more for this day!

Hang in there! I'll be praying! I hope that they can do both surgeries at the same time and that Jaxson heals well from them both.

Hugs from MI,

Alicia and Gavin

Adam, Jaci, Grant, Grace and Amelia said...

Oh Lacey! How do you do it all? I hope that you have someone helping you with some things. I wish I could help out somehow. Hang in there! You are in our thoughts ans prayers!

Unknown said...

not only is sweet Jax strong but so are you but, it is ok to not be the strong one all the time. I am thinking and praying for you

My Three Sons said...


I'm so sorry you have had a bad day. I think that if you have a thick medical record, the hospital should bend over backwards and put Jax at the top of the list so you could get out quicker!

I hope today is better for you.

Sending smiling faces your way!

Heather said...

Thinking of you and feeling as though we really should have scheduled our pity parties on the same day!I hope sleep came easy and you slept hard.I hope Jaxson rests well, for what was sure to be a long day for him also and I know tomorrow come and you will fight on like the champ you are ... Jaxson does the leading in the fighting department and you follow .. beautifully I might add.Kisses to the mighty little one.