Appointments

This morning we got up early to go to Anniek's first appointment, Rheumatology.  The doctor looked at her joints and said that her right wrist is still a bit swollen, she did range of motion of her joints and Anniek had no pain with the range of motion.  She also watched Anniek walk and run.  Anniek is still toe walking and they are unsure why she is still toe walking.  They also said that they want blood work.  They said that they were going to poke her for blood work and said it in front of Anniek so of course she is in tears.  I said that she has a PICC line, they can use that, eventually after discussing it they decided to wait until after Cardiology to get the blood work in case she needed blood work from them.  When we finish it was 4 HOURS before her next appointment, so I decided we may as well go home as there is nothing to do around the hospital for 4 hours. 
We went back to the hospital after lunch for Anniek's cardiology appointment.  They just did weight and a ECHO.  We did not even get to see the Cardiologist today.  She will look over the ECHO later and let me know if there are any concerns (I like it better knowing that day).  I also talked to the nurse practitioner there and told them about this mornings appointments and them wanting to poke Anniek even though she has the PICC line and she said that they should do it through the PICC line and if they won't do it through the PICC line to have them page her and she will tell them to do it through the PICC.  She wants blood tests done next week...twice...after the antibiotics are done before they decide.  So we went back and got the blood work done, they did it through the PICC no problem. 
We also made another Rheumatology appointment for January and if she is still toe walking they will look into it more, and Cardiology is not until February again, unless they saw something on the ECHO which I have not heard about yet, but will post if its not good news. 
Now we just have to wait until next week to see what the 2 blood tests say before they pull the PICC line.

Big Day Tomorrow

Tomorrow we go back to the hospital for a check up with rheumatology to check how Anniek's joints are doing.  She is still limping off and on so it will be interesting to see what they have to say about that.
We will also be seeing cardiology to check on her valves and we are hoping that they are unchanged, if they have changed it could mean that the infection did spread to her heart and it just did not show yet in emerge when they did the ECHO which would not be very good as she already does not have good valves.
She will also most likely be getting blood work tomorrow so that they can do another culture and make sure the infection is gone.  The results will tell us how much longer she will need the IV antibiotics. 
Hoping for lots of good news tomorrow!

The Drawing Hope Project

So I heard about The Drawing Hope Project  it is to support the incredible story of 30 young children who were born or are living with health conditions, their imaginations, their hope and the belief that anything is possible. Told through magical photographs inspired by and based on their own drawings, it will come together in a candid, real-life storybook to offer hope to others who are fighting, surviving, or just looking for some heart-warming inspiration. They are all full of hope.
 In the summer and Anniek drew a photo for The Drawing Hope Project and I submitted it.  It is of her as the Hero of the Sand Castle.  Today the photographer came out and took pictures of Anniek to make her into a Hero of her own Sand Castle.  He sent me an out take from the photo shoot...and this is it...

Home Sweet Home

Finally get to sleep in my OWN BED tonight...instead of one of the hospital chairs that pull out into a couch.
They had the PICC line scheduled to be done at 2:00pm but when the nurse came in the morning she said that they were going to do it early.  About half an hour later she came in and said that they are doing it at this time.  My sister who arrived in town last night was supposed to see Anniek before she went in so I had to call her and tell her to come ASAP as she is going down a lot earlier then thought to get her PICC line done.  Anniek was in the stretcher ready to be moved when my sister came in...Anniek told them we could not leave until her Auntie got there.  
So she had her procedure done at 10:00am and was awake and back in her room by 10:30am.  We thought that we would be spending the night in the hospital as we did not think that they were able to get a home nurse in for tonight, but they were able to get a nurse in for the night and Anniek was able to go home after her 4:00pm dose of antibiotics. 
So now we are waiting for the home nurse to come so that we can get the PICC line and IV pump set up for her next dose of antibiotics.  They were supposed to be here by now, but they are not here and the nurse is calling them to get it delivered quickly. 
Then its time for bed for us for hopefully a good nights sleep.

Finally A Diagnosis

Well we have seen a TON of specialists and they have the blood cultures back now so they have an official diagnosis for Anniek now.  She has Post Strep Reactive Arthritis.  Basically the Strep throat spread to her blood and her joints.  So she will need IV antibiotics for 4-6 weeks.  The physio therapist got her walking with a walker and  tonight she finally decided to try walking without the walker for the first time.  So hopefully tomorrow the physio therapist will approve her not having a walker any more.  She is a lot more herself and has more energy now. 
I asked them to put a PICC line in so that she is able to come home.  A PICC line (Peripherally Inserted Central Catheter) is a form of IV access that can be used for prolonged periods of time.  Anniek had one when she was a baby and in the hospital for 2 months, so I knew that you could come home with a PICC line.  They said that they thought that would be a good idea and put in a request to have a PICC line put in. 
They also changed her 2 antibiotics to 1 antibiotic that the culture was sensitive to.