Tuesday, May 31, 2011

Only thinking of the positive

Jaxson is super junky and coughing like crazy. It doesn't seem like he's sick, unfortunately, with a trach, I can't identify the cough. It all sounds the same through a trach, I can't say its croupy, or junky. Its the coughing, nonstop coughing, which he does from time to time, because his trachea collapses even around his trach, causing him to cough uncontrollably. We tried custom making him longer trachs, then we tried moving his trach up a size, to try and push his airway open. The last try was to give him lidocaine in a neb, numbing his airway, and stopping the coughing. I never got that prescription because the coughing never got that bad for more than a day. Now it has been 3 days, and I can't get anyone to give me this prescription. Our trach/vent RT is the one that mentioned it, she is out until June 6. ENT won't write the prescription without talking to her first. Grrrrrr!!

So as I sat down to post today, nothing came to mind. Nothing good, that is. I didn't have anything to post about our weekend. Daddy wasn't here, and it was freezing and pouring all weekend. We sat at home and watched the rain. Still fighting with the IRS for our money. Real estate agent informed me that house's were selling even lower than I thought! I'm tired of posting negative, whiny posts, which seem to be our days right now. I think everyone agree's, seeing my lack of friends lately! I wouldn't want to be around me either!

But then, this afternoon, both little's were asleep at the same time. Unheard of! I was going through some stuff, trying to box up and de-clutter, and I came across a huge binder that had some of Jaxsons medical records from a long PICU stay. I sat down and starting reading. This was our longest PICU stay, 4 months, and definitely the scariest! As I'm reading PICU attending notes, cardiology notes, and nurses notes, I started to realize something.

I don't have any reason to be negative about life....I have my little boy. He is here, he is home, and he is a miracle!
During that one stay, he had 4 major surgeries (heart cath, 2 closed heart surgeries, one open heart surgery), over 150 chest x-rays, over 200 procedures, and almost 50 CT's and MRI's. Its eye opening when you can physically read what the intensivists are writing about your baby. A small piece, "This is a 6 month old, extremely critically ill baby boy with Trisomy 21. He continues have congestive heart failure and respiratory failure. I feel he will need yet another transfusion of packed red blood cells, and will need to remain mechanically ventilated for an unknown amount of time."
Wow!
Jax is my hero, he is amazing, and he is mine!

So from now on, no matter how long our downward trend in luck continues, I'm going to say one positive thing every day, and I'm changing my negative attitude now!!
Today, I just think of my miracle baby, and how lucky I am that I can still hold him, and smell him (oh he has the best smell!) and kiss all over him!!!

16 comments:

Runningmama said...

This little boy is a miracle and you are a fabulous mama!

Alison said...

He is definitely a miracle boy.

stephanie said...

seriously, don't make me cry first thing in the morning!!

Can't tell you how many times a day i think of you and what you are going through right now, with Ray away and everything on your shoulders.
You have and always will be in my eyes THE most perfect mother.

Love you Lacey!

Becca said...

He is such a miracle!! And this was a wonderful post, Lacey. A great perspective, and a good reminder not to take the beautiful things in front of us for granted. :-) I hope Jax is feeling better soon and that cough goes away! ((hugs))

Cathy said...

Ah Jax...you are such an inspiration, warrior boy. Hugs to you momma!

Sherry C said...

He is so cute you are amazing Mommy. I have to agree with Runningmama.

ABandCsMom said...

He's amazing, that's what he is! As for the whining...it's my biggest pet peeve when reading what other mom's post. However, I, for one, have never once thought of you as whining. You have a very, medically fragile, sick little guy. When I read your words, I read frustration and heartache, sadness and concern. All of which are very much justified. If you were whining, we'd be reading things like, "why my kid?" or "why me?" or "I hate that my kid is the sick kid." But Lacey, you NEVER do that. EVER! You speak from your heart, pure love for your little guy. And as amazing as Jax is, you are every bit amazing!

Michelle said...

I like your posts, I don't read them and think they are negative. I just think what an amazing job your are doing with all that you have to deal with. Praying for you!

Junior said...

kiss that miracle boy for us.

Sarah Marie said...

Miracle he is!

“Love works in miracles every day: such as weakening the strong, and strengthening the weak; making fools of the wise, and wise men of fools; favouring the passions, destroying reason, and in a word, turning everything topsy-turvy.”

~ Marguerite De Valois

Chromosomally Enhanced said...

amazing is a perfect way to state Jax!! you really rock..smiles

Rochelle said...

Great idea! Love the positive! Praying the IRS releases your money and that ticket prices come down so Ray can come home to visit!

The VW's said...

What a great reminder for us all! Sometimes it's hard not to see all the negative, but there is always something positive as well! And, especially when you look at someone like Jax! There's no better example of a positive perspective than him?!

I was just thinking how crazy life is right now for us, but then I thought back to the long hospital stays that we used to have with Gavin, and suddenly my perspective changed as well! Things have been a lot worse for us, and I know that I can handle all the craziness, if it means we are not in the hospital!

Hang in there Lacey! You have tons on your plate right now, but there is no better Momma that I know who can handle it better than you can! Hugs!!!

Zoey's mom said...

Blessed and lucky,all of you and stronger each and everyday because of your miracle guy.Don't be so hard on yourself Lacey,you are an amazing mom,to all of your children and a loving and supportive wife.Life can be overwhelming for us all,even in the best of circumstances and for you,you juggle a whole lot and Ray is not around and well,you are doing a fabulous job.Please remember that.

ANewKindOfPerfect said...

You are not whiney! And you know what, sometimes we deserve to be whiney! I know what you mean though ... I haven't updated my blog in weeks. Literally weeks ... because I have nothing nice to say. All I want to do is whine and cry about the condition Emily is in and how each week she goes even further downhill ... no one wants to hear that.

So I just drop in on our friends, and give love. Here (((LOVE))) That's yours! :)

Melissa said...

You are doing a fabulous job with Ray gone. It's overwhelming being a single parent, even if it is only part time. Jax is a miracle and sometimes it takes a little reminder to be thankful about what you do have, expecially when times are rough.