Monday, March 2, 2009

My heart is aching

Well we came home tonight. But with no plan and not knowing if he is still clotting on the lovenox. The chief resident said that they had talked to all his docs and they think that there's not really anything they need to do. Well I need to know if there is a clot. The resident said they would come back with the doc. Well then I called my pediatrician and she told me to have the nurse page the resident and tell them I want the hemo doc to come talk to me. We paged them and got no answer. Then she found his discharge papers in the computer. She paged them again. The resident called back and said he didn't have anything else to say and that they had filled out the discharge papers.

Not a soul came by to talk to me.

The nurse came in and said he was on the phone if I wanted to talk to him, and I said no, just get my discharge papers so I can get the hell out of here. I was ready to punch someone. The hospital continues to prove to me that they are incompetent in taking care of my baby.

Needless to say when I go on vacation I'm going to be looking into their hospitals, I need to find my baby a decent hospital.

On top of everything else, we lost another friend today.

Sweet little Gracie earned her wings today. She recieved a heart last Sunday, But for some reason the perfectly normal heart never started beating for her little body. They brought her out of the OR on ECMO in hopes that the heart would start working or they could relist her for another transplant. They decided yesterday that neither would work for her. So they let her go home today, please pray for her family tonight.

This song's for you Gracie girl.


Melissa said...

Lacey Lacey UGH, WTHECK is WRONG with these DOCS!!!! Is there another hospital that your Pedi can refer you to?

I am so sorry for what you are going through. I can't EVEN begin to imagine what it's like....OH THE PAIN??? At least Jax has the BEST mother God could have ever given him!!;)
Again, I'm so sorry. I will, like always keep Jax in my prayers...UGH, I wish I could reach through this laptop & give you a great big hug!!

Junior said...

I am so sorry that you are dealing with such incompetent doctors. Is there anywhere else you can go?

Lots of hugs and prayers.

LisaL said...

Hello! I've been following your story for several weeks and have been praying for Jaxson (and your family). I am completely disgusted after reading your blog tonight. I can not believe how incompetent that hospital is in the treatment of Jaxson. And the nerve of the resident to not even bother to come back to talk to you! ARGH!!! I pray that a decent team of doctors come into your lives to help!

Hope for congenital diaphragmatic hernia said...

Lacey I feel your pain and frustration about docs and hospitals. I know this is hard to think about but God puts us where we need to go. As many times as Iowa City messed with Ava. I knew that ultimately no matter what "they" did to her she was in God's hands and NOT theirs. If she was supposed to live they couldn't kill her. I know this sounds harsh. I truly believe this. If you have the desire to find a different hospital God will lead you down the right path and doors will open. He gives us Mothers the wisdom to keep our children safe. We have a sixth sense. Keep pushing for what Jazson deserves and you will get it.

I'm so very sad that you are dealing with things that should be costumary. Like good bedside manners. Shame on those doctors. You do what you have to do, girl.

Prayers are always headed your way. I thank God daily for my internet friends and their sweet babies. God Bless. I hope you are able to get some rest. I know we MOm's get thought of last. Because that is the only way it has to be. Children then Mom's second. Lots of love to you and your family. Praying an answer is in sight.


MichelleH said...

Oh heart is breaking for you and Jax. How do you discharge a sick little boy with no answers? How do those doctors look at themselves in the mirror?

I can't imagine the sadness, anger and frustration you must be feeling right now. Please know that there are so many of us out here who are praying for you.

Love and hugs,

Anonymous said...

Hi there. I have just come across your blog. Again, another same story, different state. My son has DS, AV Canal - repaired, Mitral/tricuspid Regurge - repaired once, needs replacesd, brain injury, seizures, FTT, G-tube fed, PPH - try to get somebody to give that baby some Viagra!!!! Sounds crazy, but it works. That is what it was invented for. I wish I lived closer to you so I could go with you to kick some $#@#. Alas, we are in the hospital in WIsconsin right now. We will keep you in our prayers. If anything from our experience can help you or anybody else here, please visit our son's Carepage. his page name is OurLittleMan.

Good luck and God Bless!

Stephanie and Christopher in IL

Blessed with Boys said...

I totally understand what it feels like to get no answers when all you want is an attempt to figure out what is worng! I would be pissed too! Hugs from me and Malachi, we are praying for you and Jax!! Keep fighting for that little man, your doing an amazing job!!!

Cammie Heflin said...

I'm so sorry that you are dealing with incompetent people who aren't treating Jax as a child, just someone to boot out, ugh!

Kim Rees said...

Oh my gosh! I would be livid. My heart goes out to you. We are so lucky that when our Liliana was in the hospital that she received what we felt was top notch care. Where do you live? We live in Cleveland, Ohio and thankfully so, because we have two really good children's hospitals here. We chose to go to the Cleveland Clinic Children's Hospital because our insurance is covered there. Many people bring their kids there because of their reputation. It's something you may want to consider if you are not getting the results you want. Jaxson is such a lucky little boy to have such a caring, compassionate mommy. Hang in there and never stop pushing for answers. That's what the doctors are paid to do...find the problems and then fix them. You are definitely in my thoughts and prayers.

Junior said...

Lacey, you asked about Junior's pants and yes I do the adaptions myself. He had never been able to wear jeans because the waist band hurt his tummy when he was in his chair. Now he can be cool and comfy.

Hugs, Heidi

Anonymous said...

I am so sorry you are going through all of this. You deserve answers, don't give up until you find out everything.
Jax is so lucky to have such an amazing Mommy advocating for him.
Praying you will have answers soon.
If you need to vent, please feel free to e-mail me! I'm here!

The VW's said...

My heart is aching too, I'm so sorry that you and Jaxson are not getting the care and respect that you deserve! How frustruating and sad! You are on my heart and mind! I wish that I could do something more tangible to help you! Just know that I'll be praying!!! I'm so sorry to hear about Gracie as well! I can't imagine the pain!

Love and Hugs,
Alicia and Gavin

Unknown said...

Hello dear Lacey and Jaxson, I check in on you every single day knowing that GOD will guide your every decision and take you both we you need to be! I dont know the Medical System in the States, but in South Africa we have public hospitals which are so bad and people can wait up to 12 hours to see a doctor (which is shocking and so sad to me) and then we have private hospitals which are expensive, quick and of a very high standard - I would be lost to not recieve acceptable answers from my doctors... I really hope that Lord sends the RIGHT doctor at the RIGHT hospital to you! In the mean time my prayers continue and I am going to prayer extra hard tonight for some guidance for you all on which road to take next! And with this all on your plate you still come by my blog and leave a beautiful message - you are a wonderful woman Lacey and im so glad our paths have crossed - for some reason only known to the big guy upstairs! Hang in there! Megan