First of all, I need you mommies that have recieved a blankie to email me a couple of pics of your kids in the hospital. Some of you have already done this. I am making a video montage and need some hospital pics for it. My email is laceyrugg@hotmail.com
I new this was not starting out to be a good week because I didn't sleep at all last night. Jax actually slept pretty good, I only had to replace the cannula a couple of times. I just layed there. Then I got a headache. But instead of getting up and taking something I just layed in bed. Duh..
Ray called early in the morning to tell me his bike was acting up. It kept stalling out, so it took him an hour to get to work. Plus the bike needs to be registered this month. My car is also due this month, and now we need to see whats wrong with the bike and how much that will cost to be fixed. Mondo's birthday is also this weekend. Ahh, were am I going to get all this money. It makes me crazy because I know I should be saving up to go out of town with Jax too.
Sigh....
Then I got an email from Hemo doc. He had the form for me to sign from Boston, yah, but wait, there's a catch. He told them this needed to be done quick, but it can take 2 to 3 months to hear back from them.
Yeah, I had to crawl back up off the floor to finish the email when I saw that. They are going to fastrack it because he is so sick, but I don't know how long that will take. And then he said, didn't cardiology have another med or something we could try while we wait. Ha ha, thats funny, cardiology hasn't done squat and I haven't even heard from them since this started. They could care less. So I've emailed a doc in Michigan that is well known to do complicated cases too and we'll see if we hear back from him. My ped is going to call and see if there is any way she can email or call someone and tell them this needs to be done quickly. So you see, my week hasn't started out so well.
We are in June, so the countdown to surgery number 1 is on. 15 days till surgery. Hopefully we'll know more about surgery number 2 before 1 is done.
sigh, sigh...
I'm so sorry that you found out it could take 2-3 months. Maybe your pediatrician will have some pull - someone needs to see him so he can get some help soon. Why does everything always have to be so complicated and time consuming when dealing with doctors?
ReplyDeleteIs there another cardiologist that could see him up at PCMC and could let Boston know that his case needs to be reviewed soon? We will keep praying that someone will hear what you have been saying for a long time - he needs to be fixed.
I'm so sorry about the car and bike too - it seems that everything falls apart all at once and that is no fun! I wish I could do something to help make your crappy day better. I hope you can get some much needed sleep tonight!
Hugs,
Kristi
Oh Lacey, sorry your week has started out so rough. Lots of hugs and prayers coming your way.
ReplyDeleteLacy: I am so sorry this is all happening! I know it's very stressful! I don't even have the right words. If it's Dr. Bove you emailed in Michigan for cardiology then you are in GREAT hands! He is absolutely wonderful and the most skilled Dr/surgeon we have ever consulted with. I hope it's him you emailed at the UofM. I am praying daily for you all. How I wish I could do more! Love you!
ReplyDeleteCrumb! I'm sorry this is happening. Do you ever talk with George Durham or Lisa Samson Fang? I wonder if they could give you any advice.
ReplyDeleteOhh Lacey that just gave me a headache reading it, I can only imagine having to actually deal with it. Just to deal with all the apts we have, is stressful enough. Once again I stand by what I have said before, you are a very strong mama. Our heavenly father never gives us more then we can handle and he will test us to the limits but never break us.
ReplyDeleteSending our heart hugs and blessings
Jenna and Lily
Oh my goodness... not a good way to start out the week. I am so sorry. I wish I had some advice for you. Good luck my friend.
ReplyDeleteSorry my friend.Too many stresses.Way too many.Try Dr.Vaughn Starnes here in LA,at Children's.Great cardiothorasic team here.People fly in from everywhere.Worth a shot.Let me know if I can do any leg work.Kisses to the little love.And you big ones too!!
ReplyDeleteLacey, that rots,I'm so sorry.Wish there was something I could do. I put Jax's name on our special intentions in church,and I will keep praying for him, and for your sanity, which I would have lost by now.Hang in there, maybe something wonderfully unexpected will happen... I'll pray for that too.
ReplyDeleteI sure hope they speed things up for Jax and he really doesnt have to wait 2 - 3 months to be seen. I hope the Michigan doctor can help you. Will continue to pray for your family.
ReplyDeleteI'm so sorry that things are so consuming and stressful right now! It seems sometimes that "when it rains, it pours." I hate times like this! It can really bring a Momma down, especially when it involves one of your children! Try to put your trust in God, knowing that He has a plan for you and Jax and that His plans are always better than our own! (Even if it's difficult getting through at the time!) I'll be praying extra hard for you sweet friend!
ReplyDeleteBTW, I'm trying to invent a money tree. I'll let you know if it works out...wouldn't this make life a little easier?!
Do you only want pictures of kiddos in the hospital with the blanket that you made them, or any pictures of them in the hospital?
Hang in there! I'll be praying! HUGS!!!
Oh Lacey, I'm soo sorry!!! I read your comment last night & got teary eyed, I can't begin to imagined! I know that Dr.Faulton was so worth it, but just the thought of waiting that long? I agree...can't your Ped call & try to pull some strings?
ReplyDeleteHang in there! Praying for some kind of miracle {{HUGS}}
Oh Lacey that stinks! You know Jax is always in my prayers. Hang in there!
ReplyDeleteHey! Maybe Dad can fix the bike! (you mean his motorcycle right? haha!) I mean, he did build his own. I'm just brain storming here! =)
ReplyDeleteDang, I hope that the doctor can pull some strings somewhere! 2-3 months is not acceptable. :(
ReplyDeleteI am seriously delinquint in sending you blanket photos. I will take them today. When I send them, I will send some hospital photos too. :)
I am sooo there.
ReplyDeleteMy beef of late has been with the Social Security Administration cancelling V's benefits and insurace out of the blue and by mistake I've learned.
I do have somewhat of a solution, it's actually been working for me lately.
It's called yelling.
Not only do you get your point across, but it's a good tension reliever too :)
If the yelling doesn't work, then I switch immediately to incessant harrasement. 10 maybe 12 calls later, I got some results.. all in all, not too bad.
Lacie, I am sure Junior would love to make you a painting.
ReplyDeletehugs
I keep coming to your blog, hoping to find that you have heard form one of the hospitals! I've been praying lots for you and Jax and couldn't sleep last night, so you guys even got some extra prayers then! Hang in there! I'll be praying for good news soon! HUGS!!!
ReplyDelete