Friday, July 8, 2011

Home Sweet and Sweaty Home

So, let's see...where did we leave off? Ah yes, we were awaiting a plan to treat Julianne's bacteria. Well, on Tuesday morning we were told by Julianne's doctors that she would need to recieve 4 to 6 weeks of IV antibiotics at home. Plans were then being made for a PICC line to be placed in her arm and for a visiting nurse to begin seeing Julianne at home. We were hopeful that we could be on our way home by the weekend. The Infectious Disease department was being consulted for their opinion, but we were told that they are even MORE conservative than Cardiology and they would likely agree with the IV plan.

Late Tuesday afternoon Infectious Disease (I.D.) doctors came by and told us that the type of bacteria Julianne has (a type of Enterobacter) can be very effectively treated with an oral antibiotic called Bactrim. You may recall that I had a pretty scary reaction to Bactrim back in April. I asked about that and the I.D. doctor said that it only increased Julianne's risk of having a reaction very slightly. She would be at a further increased risk if she had a sibling who had a reaction to the medication. The good news is that even if she does have some sort of reaction there is another oral antibiotic that would be a good option. If you would, please pray that she'd be free from any adverse reaction to this medication. Also, it's giving her a pretty upset tummy...

The I.D. doctor went on to say that they wanted Julianne's surgeon to go back in and totally remove the pacing wires. Yikes!

Later, we spoke with Julianne's Cardiologist, and he'd also spoken with the I.D. doctor, was pleased with their recommendation of no PICC line and reassured us that she would still be able to do oral antibiotics even if the surgeon wouldn't remove the wires. Which was a good thing because he didn't remove the wires. Its kind of a big deal to remove them and an even bigger deal to put new ones on the heart.

Speaking of pacing wires, Electrophysiology was consulted regarding whether or not Julianne needs to be put back on an anti-arrhythmic drug since now it will be even longer until she gets her pacemaker. They felt that since she's done so well (by so well, I mean no SVT episodes) over the last couple of months being off her med, that we should continue to keep her off of it for now. IF she has no episodes of SVT during the next couple of months of antibiotics and the following waiting period then we may need to reconsider the pacemaker altogether!!!! If she doesn't need to be on an anti-arrhthymic medication then she doesn't need a pacemaker to deal with the low heart rate caused by that medication!! Which, by the way, would be AWESOME! Maybe, God kept her from getting the pacemaker last week because she doesn't need one at all...we will see. :) Please be in prayer that God would protect Julianne from any SVT episodes...they're not fun and they're pretty scary to tell you the truth.

On Wednesday, Julianne's Boston Cardiologist came in and asked Julianne, "Do you want to go home?" She said, "YEAH!" We got a flight for the next day and headed out of there. :) Julianne was so happy to be back home.

Now, we're back home and back to normal life, normal food and sweating any time we walk out of the door. :) Julianne will have to wait 4-6 weeks to return to her gym class, take a real bath and to swim. She's pretty wild these days, so protecting her incision is a challenge, ha ha...

Thank you all for your prayers during this surgery and hospital stay. Your words of encouragement and faithfulness in praying for our family have meant so much to us...more than I can express.

Finally, here are a few pictures:

Julianne sleeping "with one eye open" because you never know what's coming

Oh my delivery robots in the hospital!!!! How cool is that!


Talking on the phone to Aunt Laura

"Do you want to go home?"

Ready to go...except that mommy forgot to bring shoes to the hospital. Oops!

One last picture with everyone's favorite Boston Cardiologist

Playing with Daddy on the airplane

Home and blowing bubbles in the yard. :)
Thank you, God for protecting this little girl!


Carolyn and Ron said...

Dear neighbors,
So glad to hear that your little family is home. When I read about the "infection" delaying things, I, too, wondered how God was working this to good! We are having a good time here in the north where we are SELDOM sweating. It has been AWESOME to be part of Julianne's Journey, even from this far away. You remain in my prayers.

Anonymous said...

Welcome back!! I know that you all are thrilled to be home! May God continue to bless and strengthen you all and may he protect Julianne from any episodes. That beautiful smile of Julianne's does a heart good!! We continue to pray for you all.

God bless,

Anonymous said...

W-E-L-C-O-M-E H-O-M-E!!!!:))))

I am so happy that you all are home safe and sound!!! Even if it is sweaty;)

Wow so many reasons to thank God for revealing so many things in his own time. Your faith never ceases to amaze me!

What a wonderful thought to think that there is a possiblity that Julianne may not need a pacemaker at all!

I will continue to pray for infection to clear, no reaction to meds, no SVT's.

Julianne is so cute and pretty in every picture especially with her going home smile:)

I love you all so much and hope to get to see you all again soon.

Love and kisses to all of you
Aunt\Great Suzette

Anonymous said...

Dear Julianne,
We are so thankful that you are home in Zachary. Your pictures are adorable; I like bubbles, too. We pray that you will continue to get well from your infection and that God will be with you. Love, Jan W.

Anonymous said...

May God continue to Protect Julianne! Thanks for sharing her Journey with us all. So glad you are back home!
She is sooo precious!
Love In Christ, Adelaide