I called the NP in LA just to see if she had recieved Jax info yet. She said they had recieved it and Dr. Starnes had already looked it over. I was like wow, maybe we'll get some answers pretty fast. Yeah, not the answers we want. He said he didn't think he could fix it surgically. That he didn't think it could be bypassed. She said he didn't elaborate, thats all he said. What the heck does that mean? Is that like when they said, his brain is in status and we can't fix that so he'll eventually die? Are they saying they just can't fix it, once again, he's to complicated? I need some answers people, I can't take the vague, I need the whole explanation. Are they saying there are just to many collaterals? Probably, besides the collaterals around the SVC, he has collaterals around both of his main veins coming back from his arms (I'm so angry right now I can't even think of the name of those veins.) He can't have a picc line in either of his arms anymore because his chest is just a spagetti bowl of veins, everything has clotted off before we knew he had the antiphospholipid antibody syndrome.
I don't know what this means, I know he is going to call our doc, hopefully he goes into more detail with him. And I know we are still waiting to hear from Boston, and Boston is the best, but right now I'm not getting my hopes up.
I'm just tired. I'm tired of having a sick baby. I'm tired of surgeries, of oxygen, of feeding pumps. I'm tired of syndromes, of cecostomies, of hospitals. I'm tired of seizures, of shots, of meds. I'm tired of doctors, of "can't", and I'm tired of life.
I'm just tired.
Ya think its time to refill that prozac yet?
1 month ago
28 comments:
Lacey I am so sorry that you did not get good news and the doctor did not explain his decision. So frustrating. Lots of hugs and prayers
Oh Lacey, I'm sooo sorry that you can't get an answers. I can't imagine how frustrated and upset you are. Big hugs from VA.
OH LACEY...I'm so so sorry!! Just don't give up now, try try to have FAITH! Wait until you talk to the Pedi to get the facts....I know, EASIER SAID THAN DONE & you have EVERY STINKIN RIGHT TO BE DONE!!! UGH, I'm so sorry!! I can't begin to inagine your frustrations:(
HUGE {{{HUGS}}}
Melissa & Dillon
xoxo
Oh I am so sorry that was the news from LA. Hopefully the doctor can elaborate with your doctor so that you can get some "real" answers and explanations. Don't give up now - he has come so far - there are other doctors and hospitals still looking at him.
I know you want to be done - but hang in there for your sweet boys. It is so hard to have a child with so many medical needs and supplies. Please feel free to vent - you need to - and a lot of us who follow your blog completely understand your overwhelming feelings of wanting to be done with certain things. We will continue to pray, pray, pray and have lots of faith!
Give your sweet Jaxson hugs from us!
Kristi and Carter
Lacey I send hugs your way. You must be exhausted in all ways. Go kiss your beautiful baby boy, you know you never tire of love.
And I will pray that the fix is in Boston.
Lacey--it's very hard to hear that information. I think your feelings are normal. I am sorry all of this is so frustrating. I am praying for you and Jaxson.
I am praying for you, for answers, for piece of mind! Stay strong, you are doing such a fabulous job.
I know how frustrating it can be not to have the answers you desperately need.
I'm sorry for your pain and frustration. ((HUGS)) and prayers are sent your way.
---Jen
That just stinks. OK,there is still Boston.Keep some hope and we're sending prayers.There has to be someone out there who can help.God just has tolocate them quickly. We're praying Lacey
I'm so sorry you don't have any answers that explain things. I'm hoping your doctor will tell you something in better detail. Try not to give up.
I am so sorry that you are having to go through all of this when all you want is for your sweet boy to feel better. I can only imagine how upset you are. You amaze me. You are so much stronger than I think I could ever be. We'll keep praying. Come on Boston...
I am sooo sorry Lacey! We will keep praying for Boston. You might want to start rehersing that ER Room speech......(wink, wink) and make some reservations in Boston. Hugs!
Steph and Christopher in IL
Yes, refill the Prozac. Eat some chocolate. Go for a run. Yell. Cry. And then live another day. I am sorry that it's so hard. I really wish I could fix it. I wish I could bring you dinner (although right now it would have to be KFC or something drive through - I'm not cooking much these days)
I am sorry my friend
Lacey - I am so sorry the doctor wasn't helpful and that you are having such a hard time.
I hope you get some better news from Boston.
Big hugs
Prozac will at least take the edge off! It won't solve your issues and I'm so sorry that you are having to deal with so many issues! It's so hard to not have control over such things! I wish that I could help you in some way! I'll be praying for you friend and thinking of you too!
Is Boston the only option left? Has anyone else gotten back to you? Hang in there! And, Take care of yourself too! HUGS!!!!!
BTW, how is the Nap Nanny working out for Jax?
Lacey, I have no words for you because I know you have heard it all and probably nothing is making you feel good right now. But just know that I am thinking of you (all the time) and praying for you to find some peace.
Yes, Dr. Edward Bove or Dr. Jennifer Hirsch. Has your doctor contacted any of them? Hoping and praying that you get some good news very soon! HUGS!!!
Lacey, I am so sorry to read this. I hate when they don't tell us the whole story.
I wish you lived near me, I would love to bring you a cup of coffee and a big hug!
I am sorry that you, your family and Jax has to go through all of this. I don't know what lies ahead, but I will pray for peace for all of you...keep focused on peace, hope and comfort! And just keep loving that sweet little boy!
How frustrating! I wish I could make it all better for you. We've put Jaxson on our prayer list at church so we have extra people sending prayers your way. Hang in there.
Lacey, Wish you had better news, maybe Boston will be "the place". Keeping you and your family in my thoughts and prayers. Angi Grasso
Boston can do things that many other hospitals can't. We are keeping our fingers crossed for Boston.
We love you guys, and if you need to talk call me okay?
((HUGS))
I am so incredibly sorry for what you are dealing with. I cry as I read your post because I feel for you and little Jaxson. Hopefully Boston will bring brighter hope and answers. You are in our thoughts and prayers daily.
I pray that everything works out.
Hang in there.
Oh Lacey,I had such hope with Dr.Starnes.Although he did Zoey's surgery,this type of fix may not be his thing.There is Boston and we WILL pray for nothing but good news from there.I wish I could lift this from you.From Jax.I wish I had answers and all the quick fixes but once more my magic wand is on the fritz again.So I pray and get mad and pray some more.Like I said in my last post .. there is always the pharmaceuticals when all else fails and sometimes that my friend, is all we can do.And hope.Remember Lacey,there is ALWAYS hope.Don't let this process and experience and this journey rob you of that.Ever.Love to you.
Oh I hate that your feeling down. Just remember, God is going to take his time and find the right doctor for Jax. So he doesn't think the LA doc is good enough? Fine, he will find a great one. Just relax.
I know all about the feeding tubes, nebulizer, and what ever else in the middle of the night, bright and early....
You are such a strong person and no one can take that away from you. Keep your chin up, your a great mother.
Thanks Lacey, no, Junior's health has never allowed him to attend school. He has a fabulous home instructor from the district who comes out 2-3 times a week, but for the most part he is homeschooled.
Girl, I have no insurance and I'm broke.. so if you refill that prozac you better share!
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