Wednesday, August 3, 2011

Reality.

I spent the day today with Jax again in the ER. He was taken by ambulance from my peds office after high white count and low blood pressure made her worry that he was getting septic. She said the hospital would freak if they knew she'd sent him by car with that low of pressures. Of course once in the ER, his pressures were coming up, and his heart rate coming down. They drew cultures from every orifice to try and find the source of the white count. They gave IV fluid to bring electrolytes up a bit, and said I was competent enough to watch him at home for more signs of sepsis.
*sigh*
My Jaxson, my sweet boy, I wish he would just tell me what is up with his little body. Our trach/vent coordinator said its very possible for his airway to be getting worse instead of better. His chest muscles are super weak, and he doesn't really grow much. Besides the fact that he doesn't do anything normal.
She left me a message today saying she had talked to pulmo and the consensus was to increase peep to 8 on the vent and try to keep those airways open. Since I missed her phone call I didn't get to ask what about during the day when he's off the vent and still struggling? In a way I don't want to go there. Again we are going backwards. Increasing settings instead of lowering them.

You know how badly I would love to blog about tubes in ears, or therapies that we are doing. Yes, I now have Arina that does those "typical" things, and I can blog about that with her. But in the end, its always about struggles to keep my little man alive. Before I found blogging I felt so out of place in the Down syndrome world. Down syndrome was something that was barely ever mentioned because so much other stuff was going on. I hated going to our local DS parties and watching the kids run and play, while answering question after question about why Jax can't do this or that. Online I found other families that were in the same boat as us. Its refreshing, to know that we aren't the only ones.

We'll keep fighting alongside Jax, until he tells me he's done.
I'll continue to get little sleep at night, because that is nothing compared to his daily struggles.
All be it slow, we will get to California, maybe a bit behind schedule thanks to Jax.
But what would life with him be without constant drama.
We'll probably never know!!

30 comments:

Kristen's mom said...

Sorry you are having such a hard time. With Kristen I never really even thought about the Down syndrome.
It seemed like we were always fighting cancer.
Jax's color scares me a little.
I am sure you already know this well, but sometimes you can't even take things a day at a time, sometimes it is only one breathe at a time. I hope both you and Jax can get some rest tonight.

Scrappy quilter said...

Sorry to hear things are going so badly for Jax. Saying a prayer for your little man. Hugs

Anonymous said...

:,(

My name is Sarah said...

Oh Lacey, How I wish I lived closer to give you a hug right now. Is that a metal bracelet Jax has on his arm? If so, I wonder if that is causing some reaction. Long ago when Sarah had her trach, I had something similiar on her for id and we were going through the same type of perplexing stuff with no real dx and a nurse asked me about it. Once we took it off, things improved somewhat. Just a thought. Hang in there.

Melissa said...

I wish I could make things better for you and for Jax. Or at least offer a hug.

Zoey's mom, Heather said...

I love you so much my friend. You family. Your boy. I wish you were next door so I could sit and visit with you and just hold Jax.For now, until you are here,not next door but at least in the same state, I will just keep sending prayers and love your way.

ParkerMama said...

Lacey,

I spoke with Pulmo today and she asked if I was the one who had called from the ER. I said no, but that you were hoping to get in touch with her.

My heart sank when she said "ER" and I've been thinking of you all day.

We've got lots of prayers going on over here and you've been a part of them.

You know, I think it's perfectly fine to simply say, "No. I'm not taking him home until you figure out what is going on....and what to do about it."

~hugs

Tammy and Parker
www.prayingforparker.com
@ParkerMama on Twitter

Alison said...

Praying for your little warrior.

Patti said...

Oh Lacey, I am praying for you and for Jaxson. Please know how very special you are to all of us. oxox

stephanie said...

Love you...

Kiley said...

I love reading your blog for all the same reasons. My hunter will never be a typical ds child and him having ds is usually the last thing mentioned through the 100 + seizures per day, respiratory illness after illness, and what everelse seems to happen along the way. It is nice to know there are other families in the same boat. You are an amazing mother and the way you handle your daily struggles is an inspiration and motivation for me to try a little harder with hunter.

Heidi Ehle said...

Prayers sent your way.

Justylou said...

Prayers and hugs.

Be gentle.
Shannon

Shelly Turpin said...

have they consider the vent 24/7 to give him some extra support? helps with Bell. I am so sorry the house, and school about the start, and now Jax is all together - and you all by yourself. hugs my friend!

The Kirkland's said...

I just found your blog through another blog, just wanted to let you know I am praying for your Little man, and your family.

Mama Mason-Mann said...

Oh Lacey, I'm sorry his life has to be such a struggle. So hard for you both. My thoughts are ALWAYS with you and sweet Jax as you navigate this journey together. Hope he starts feeling better soon. HUGS

Meghann said...

I'm so sorry. :( I admire your strength and have so much love for your family. I'll send some prayers your way, wish I could offer more.

Suzanne said...

Hi Lacey! I am so sorry for your newest struggles with JAX. It is so hard when something "new" happens and it is hard to figure it out. These little kids are so special that sometimes we are the only ones that can tell the doctor what they need to do to help them. Several years ago (my daughter is 9) I stayed in the PICU (before L pod) for almost 3 weeks before finding and getting what we needed for my daughter. The hospital is absolutely no fun! When we left we left with an almost death sentence. O2 needs were quadruples, 24 hour vent, 8-10 nebs a day, vest treatments, 24 hr contiunous IV antibiotics. She was only on vent 12 hrs a day previous and had 2 treatments a day. 2 yrs later, 1 less lung, 2 yrs of continuos antibiotics (actually carried around a purse 24/7 with IV inside), 6 months of 24hr vent support, she is still here and kicking. The full vent support is hard. It really makes you have to be at home quite a bit more.

Anyways, what I was getting at is that it is hard!!!! Absolutely!! but maybe see if leaving him on the vent for a few days (most the time)helps him out at all. I know it is emotional! But maybe he is a little under the weather and just needs a break from breathing for a bit. It doesn't mean it will be forever.

If you feel that he needs something from the hospital be that obnoxious parent that no one likes.

I can tell from reading that you are an amazing mother! Hugs and a few tears from me to you. These kids are so amazing and challenging at the same time!

Good luck making it through the next few days.

Mrs. K said...

Lacey, I will pray for strength for you and your family, for Jax and better health.

j*e*n said...

I'll be praying for you & Jax! And sending you hugs from central IL!

Cindy said...

I found your blog through another blog, and keep checking back in because you have such an eloquent way with words, and I admire your strength and practical wisdom. (Plus, all those amazingly cute pictures of your beautiful children!) Just wanted to let you know that I'm thinking of you and sending thoughts of strength & healing your way, as you navigate this tough time!

BaNaNa said...

Praying for little Jax, he is so precious. Hope all goes well!!
Love the twins,
Emily and Anne
P.S. came here from Lily's blog.

Junior said...

lots of hugs and prayers

Anonymous said...

Praying for your little man's healing. . . .

Chromosomally Enhanced said...

smiles...you are a rockstar and Jax amazes me..I think of him everyday and pull for him to have a great day and a easy night for you...hugs

Amy said...

Ugh -- Lacey I so pray for healing for you both.

Justine said...

So sorry it's been so tough! Praying for you and Jaxson!

Erin said...

Sending big hugs to you and to Jax!

Heather said...

I want to wiggle my nose like the Bewitched lady and make Jax all better. If it were only that easy.. Praying for him and hoping you can get things figured out soon.

Sweet Pea's Mommy said...

Thinking of you guys! You are an amazingly strong woman and have a wonderful family. I wish there was something I could do to help!!! Hugs!!!!