On the Road Again!!!

[Jennifer and Jack]

Who is it that sings that song "On the road again...I just can't wait to get on the road again?"  Except I am going to change the words to, Off the road and home again... I just can't wait to be able to stay home again"

I went to my moms a week ago Monday to pick up Jack.... as I was traveling there I got a phone call from the nurse... you know the dreaded "how are you feeling phone call?' Thankfully that was last weeks disaster and scare.. my blood work that they are monitoring to check for infection was drastically high... Not a good way to start a Monday.. Thank God this week it is better...

However, Monday night as I got to my moms I felt very sick and lightheaded, we took my blood pressure and pulse.. They were extremely high.. I had to go to the ER in Hilton Head .. I was put on two blood pressure medications that are supposed to make my heart rate go down.. but so far they only go down a little bit to the 130s.. so it basically feels like I am trapped running on a tread mill, even when I am laying down in bed... I go as high as 170 so.. I guess 130 is better but still.

I brought Jack home on Wed.. He is doing SUPER Great.. you would never know I left him for eight weeks.. He just picked right up where we left off... He is eating, playing and doing great.. He seems well adjusted.... He had an ear infection but that is better... I am so happy to have him home.. for us to be together.

The doctors here are not sure what to do with me.. They are too afraid to do further invasive testing because of my airways.. I was told today that even the surgeons at the big university did not want to touch my case.. well good thing for me I didn't want them to either..

I against everything I want to do, made contact with Cleveland Clinic in Ohio. After much research and  phone calls I found that the Cleveland Clinic is rated the number one Heart Hospital in the USA for over 17 years. They have better then excepted outcomes for high risk surgical cases...

We don't know that I need to have the surgery.. but no one but me seems impressed that my blood cultures are negative... I am happy about it, they think it is not a big deal that it is negative because well I am on Daptomycin.... and they want to see what happens when I come off the IV antibiotics... We can't explain the high heart rate or the chest pain I am having..

I regret immensely getting this device in my heart and even more that the doctors put it in when I had a fever... UGGG so careless.

So I am going on the road again... This time it is just for a one day consult I think. I am so happy that my dear dear friend is going with me Susan of Susan and Sasha is going with me... We will have fun just being together, we always do. She has been a major support person in my life for over 16 years now and we always have fun....

We are leaving either June 6th of June 7th I have a June 8th appointment... They are supposedly going to do all the testing I need in the same day.. I don't see how but they say they can...

Once I am established there, they can follow me and dictate to my doctors here what to do. I hate that no one here is sure, I understand and appreciate their apprehension but that sure the heck is not going to save my life......

It is very hard not to be scared... The worst part is just waiting and waiting and waiting.. My stop date for the antibiotics is June 15th... Then the waiting begins, the weekly blood cultures, it will go on for at least a year.... if they remain negative, if they turn positive, I will have no choice but to have surgery....

Waiting sucks... pardon the french..... but I don't feel horrible minus my pounding heart..

I hope one day I can say I am NOT ON THE ROAD any more and that I get to stay home and not leave my boy.. He will go back to my moms on Tuesday the 5th.....

Thankfully he loves it there and he seems to not mind being home either.....

If you ordered a magnet from my fund raiser you should have it in the next week or so.. They are so cute I saw a picture of them .. They look great on the cars.....if anyone wants one let me know.. Sorry that it is exclusive to Goldendoodles.. My breeder is the one who did the fund raiser for me.

It says Life is Better with a Golden Doodle. It is one of the oval white magnet bumper stickers...

Please keep praying and sending good thoughts...for the chest pain and heart rate to go down and for all infection every ounce of it to be gone from my body....... My family is so worn out from this it is so sad to me.... I would love to give them good news, and I personally would like some too..

I  read on here daily but I have not posted a lot because I am pretty anxious and trying to remain calm and just enjoy Jack...

xoxooxox

[Ricki and Tara (doodle)]

Hope things improve for you soon!

[Lisa, Daisy & Dexter]

I am sorry that you have to go to yet another hospital but I am super excited that it is here in Cleveland. It is a wonderful place, huge campus and they are world renowned for many things but especially the heart. My Son in Law is a Dr. of Physical Therapy at one of their locations.

Aside from the fact that I hope you don't have to go through more than one day of testing and I will miss seeing you if you do, but if you end up staying over the weekend, Daisy and I will be there. 

I am, as always, amazed at your positive outlook and your awesome faith that the Lord knows what he is doing. Be well my friend and good luck.

[Martha & Cooper]

Jennifer,

We have experience with Cleveland Clinic!   They are wonderful and do get the testing and consult done in one day, if you have the right person set it all up and follow you through the process.    That is key!   I went with my Husband for his heart condition and everything went smoothly until the end of the day when there was a snafu with the Dr that was supposed to sit down and go over everything.  One of the staff members there  marked him as completed when he hadn't even seen the Dr.!   They had to scramble to get the CardioSurgeon back in there to see him.    Needless to say, we weren't happy and he was not happy with is staff.    They actually tried to get us to come back another day instead of admitting their mistake to the Dr.   That would have been a 4 hour drive one way.   We told them no way, get hold of the Dr.   Not our fault. 

Best of luck to you!   Are you staying near there?   There is actually a hotel connected right with the clinic, if I remember right.