3infections later

The Mri went good and they found access for another picc in her right arm. The MRI also showed a lesion on her 7the right rib but the docs don't seem to worried. They are just goning to keep a close eye on it and do more frequent scans. I am worried though so it definitely wont be put on the back burner.

In the mean time all of her cultures are coming back positve for gram pos rods. They ha vent identified the type of bug it is yet but the 5th 6th 7th 8th and 9th are positive.  Her central line was pulled on the ninth and replaced with the picc  So far all cultures from the picc are negative. I pray they stay that way or the picc comes out also.

Her spirits are pretty good as long as I have spaghetti for her. I am on my third batch. I have to go to the RMH and cook it, she does not like the one on the menu. She also gets pretty mad if any calls her Alicia, she isw now Princess and she will not answer to anything but Princess. That is something my mom started and NeNe and it has went way overboard. O well if thats what makes her happy.

We will probably be inpatient another two weeks and then out patient A couple of weeks also. I JUST WANT TO GO HOME!!!!!!!!!!!

She misses Mommy and Daddy real bad. She talks to them every night from her cell phone. YES she has a cell phone. NeNE gets the worst of it though cause she calls her every morning when she wakes up and they are an hour ahead in Kansas.


So the plan for us is to hurry up and wait. Hopefully no more positive cultures come!!!!!!!

Mee-Ma

IN CINCINNATI ONCE AGAIN

I KNOW IT HAS BEEN A VERY VERY LONG TIME SINCE I UPDATED. THE SAYING IS THE FEWER THE UPDATES THE BETTER SHE IS. NOT IN OUR CASE.... WE HAVE BEEN IN THE HOSPITAL MOST OF THE PAST TWO MONTHS AND I DID NOT HAVE MY LAP TOP.


SHE WAS MED FLIGHTED YESTERDAY FROM WESLEY HOSPITAL BACK HOME AND WE ARE CURRENTLY IN CHILDREN'S IN CINCINNATI. WE ALREADY MISS THE NURSES FROM HOME, ALICIA WAS FINALLY STARTING TO BE NICE. WE ALSO HAVE VERY GOOD NURSES HERE, AND ALICIA IS VERY WELL KNOWN.


ANYWAY THE REASON FOR BEING MED FLIGHTED IS DUE TO ANOTHER LIN INFECTION. THIS TIME IT IS YEAST, WHICH I HEARD IT IS NOT EASY TO GET RID OF. THIS IS THE SECOND INFECTION SINCE THIS LINE WAS PLACED. THE SURGEON WHO PLACED THIS LINE SAID IT WOULD BE NEXT TO IMPOSSIBLE TO PLACE ANOTHER ONE  BECAUSE ALICIA'S MAIN ARTERIES ARE COLLAPSED. SO RIGHT NOW THE BMT DOCS AND SURGEONS ARE FIGHTING OVER IF IT SHOULD BE PULLED OR TRY TO SAVE IT. YEAST IS VERY HARD TO GET RID OF AND STICKS TO LINES. IF THE LINE IS PULLED THERE IS A CHANCE THAT ANOTHER ONE COULD NOT BE PLACED AND SHE WOULD LOOSE ALL ACCESS AND THAT IS NOT GOOD.


THE PLAN NOW IS TO DO AN MRI IN THE MORNING TO LOOK AT HER VEINS AND SEE IF THEY WOULD BE ABLE TO REPLACE IT. IN THE MEANTIME THE ARE RAISING THE DOSE OF ANTI FUNGAL GOING THROUGH HER LINE IN HOPES TO FIGHT THE BACTERIA.


I AM NOT SURE HOW LONG WE WILL BE HERE THIS TIME BUT IT SOUNDS LIKE IT MIGHT BE A WHILE. I PROMISE TO UPDATE WITH ANY NEW PLANS.

MEEMA

alot has happened

Once again I am sorry about the time in between my updates. I hope everyone is doing well and many prayers to the ones who are not.

We got to attend Camp Sunshine this year. Alicia and I both enjoyed oursefs soooo much. It was a much needed time away besides being in the hospital. We seen many old friends and met many new ones. I was very very nervous and held my breath many times. The worse was having Alicia in the airport in Chicago. I kept her very close to me, and she was transported by wheel chair from gate to gate. We seen an old friend from camp in the Washington airport and he sat behind us during the flight from Washington to Portland. His name is Zac and he is 24 with FA. Alicia just loved him. Alicia also connected very well with a girl named Saundra, she met her three years ago at camp  and remembered her right away. And of course her favorite person of all times was there, Keith, no one ever compares to him. I was very excited to meet Russ Holden from Caddy for a Cure, he was there with his wife.

All went well the week we were there but of course when it comes to Alicia nothing goes so smooth. Two days after we were home she spiked a fever and had a HORRIBLE cough. We took her to the emergency room and they ran tests and it came back that Alicia  had contacted the Paraenfluenza three. That set us four days in the hospital but all is well now.


We will be back in Cincinnati on the 22nd for a week. cross your fingers its only for a week.

Thank you for all of the support and prayers.

Michelle

UNEVENTFUL NIGHT

EVERYTHING SEEMS TO BE GOING WELL. ALICIA ACTUALLY BEHAVED HERSELF AND HAS NOT PULLED ANY SURPRISES. THEY PULLED OUT HER PICC AND NO SHE HAS A REGULAR IV TO HELP CLEAR HER SYSTEM. ALICIA IS TELLING EVERYONE NOW THAT THEY PULLED HER LINE BECAUSE SHE HAS SPIDERS INSIDE OF HER. THE PLAN WAS TO REPLACE THE PICC AFTER 72 HOURS BUT DOC DAVIES SAID SHE IS GOING TO AIT LONGER IF POSSIBLE. SHE SAID AS LONG AS SHE IS TOLERATING THE IV SHE WILL LEAVE IT IN TO BE POSSITIVE THAT THEY GET ALL OF THE SPIDERS OUT OF HER.


SHE IS DOWN IN THERAPY AT THE MOMENT. SHE WAS SOOOO CUTE. SHE IS EARING A PAGEANT DRESS THAT NE NE GOT HER AND IT FLAIRS OUT AND SHE LOVES TO DRESS WITH IT ON. ( GET READY KRISTIN SHE IS GOING TO WARE YOU OUT AT CAMP. )

ALICIA IS BACK I WILL UPDATE LATER.

MEE MA AND ALICIA

ANOTHER LINE GONE

WELL THEY ARE PULLING THE PICC LINE AGAIN. ALICIA DOES NOT KNOW YET SHE IS IN THERAPY, SHE IS GOING TO BE MAD. THE BACTERIA IS STILL GROWING SO DOC DAVIES WANTS THE LINE PULLED AND NOT REPLACED FOR AT LEAST 72 HOURS. SO SHE WILL BE GOING THROUGH GETTING ANOTHE LINE PUT IN AGAIN.


THIS IS ALSO GOING TO PROLONG US GOING HOME EVEN LONGER.W E WILL PROBABLY HAVE TO MOVE IN WITH ERIKA SINCE I AM NOT WORKING AND BILLS ARE DUE. AS LONG AS ALICIA IS OK THAT IS ALL THAT MATTERS.


ALICIA DID PULL ANOTHER LITTLE STUNT YESTERDAY. NEVER A DULL MOMENT WITH HER. ANY WAY SHE CALLED THE POLICE AND TOLD THEM HER MOMMY WASNT ANSWERING THE PHONE SO SHE COULD TELL HER HAPPY MOMMY'S DAY. SO WE HAD THE TALK ABOUT WHEN WAS THE RIGHT TIME TO CALL 911. LEAVE IT TO ALICIA.


WELL SHE IS BACK FROM THERAPY SO I WILL UPDATE LATER.

MICHELLE AND ALICIA