We have had an interesting couple of days to say the least at the Snyder house! The first couple of days this week were spent watching movies. We've seen Monsters, Inc., Tinkerbell, Shrek, Aliens in the Attic...the list is endless. Trying to keep a 3 year old down to even rest has been a task in and of itself! Overall she has been a non-stop kiddo who if you didn't tell someone she just had open heart surgery, they wouldn't have been able to tell!
Wednesday night we noticed some yuckiness coming out from the bottom of Jordan's incision. It didn't look to alarming but put some triple antibiotic on it with a bandaid and she went to bed. Jordan hadn't acted any different that the day before so really didn't think much of it.
Thursday morning things started to change. Jordan woke up cranky. Now there are some days that she just doesn't wake up happy and takes a bit of time to really wake up. I had just brushed it off to that. She started to act "normal" for a couple of hours but then really started to crash. I noticed her breathing rate had increased, she was agitated and couldn't get comfortable. Poor girl couldn't even stand up straight! She kept saying her tummy hurt but was pointing to where her chest tubes were located. I finally paged Jeremy to tell him that I was either taking her into the hospital to have her checked out at the clinic or to her GP. Jeremy had already talked to Trudy, one of Jordan's awesome nurses, to tell her about the incision so after hearing about this she had us come in to have some tests done.
We started off at the clinic with chest x-rays, blood work, and another ECHO. Jordan did really well for her chest x-rays-listened to the tech and even held her hands above her head for one of the side shots. She even laid really still for her ECHO! We may be able to do un-sedated ECHOs in the future! That could be huge for her considering it can take us anywhere from an hour and a half to 2 hours to get her to finally give in and go to sleep when she's being sedated!
Anyway, after everything was said and done, it was decided Jordan had a viral infection. Dr. Davis and Tina had looked at the incision and thought it looked good. (By then it was dried out and nothing was coming out of it when poked and pushed). Her blood work had come back with the white blood count being high, but Dr Edens couldn't pin-point it to anything other than it being viral.
We went home and tried to get her comfortable again. When she was awake, she either was crying, whimpering, or grunting. It didn't happen easily but finally she crashed and was asleep for most of the night.
This morning the story changed. When Jordan woke up, she was again crying. I went in to check on her. She didn't want me to really move her but when I noticed she had wet the bed, I had a feeling something was up. Jordan hasn't wet the bed in a pretty long time! When I went to move her and try to get her cleaned up, she had a look of agony on her face. And that is when the draining started. The bandaid from the bottom of Jordan's incision was soaked! It was constantly trickling down her stomach. She seemed to be in a lot of pain too. I immediately called Jeremy and Trudy.
We came into the hospital around 9AM this morning. Dr. Edens swabbed the site for infections including MRSA**. We won't know anything until the cultures have been grown out which will take 2 days. Jordan started on Vancomycin this afternoon around 1 and will have a dose that takes 90 minutes every 8 hours. Because of this drug, the IV sites don't last long-around 36 hours-so we might have to have another IV stuck. It took 3 times and a PICU nurse practitioner to get the 1st one in so it may cause Jordan to get a PICC line. These lines are meant for more of a long term IV use and could cause some discomfort. We are hoping the one in her hand lasts as long as it needs too so Jordan doesn't have to get one!
**MRSA or MERSA is a staph infection that is ONLY treated by Vancomycin. Vanco is also a high powered drug and really a last resort drug according to Wikipedia. This could be hurtful to her kidneys so she will be closely monitored. Once her test results come back and it's not MRSA, she will be taken off of it and will be put on something else.
She is comfortable right now. Jordan is still on her Motrin around the clock every 6 hours, Lasix twice a day, Tylenol every 4 hours (to help get to the next dose of Motrin and to control the fever), and Pepcid to help with controlling the stomach acids from her Motirn. Her appetite isn't the greatest and her activity level isn't the highest right now. We are also trying to get her to drink more fluids but also on an IV for them.
Most of our day was like this...
When Nana came, it was like this for a bit!
We got some smiles and activity out to Jordan when Nana came. It was good to see a smile on her face where it had been missing the last couple of days!
We believe this all started because some Tagaderm had taken off some glue off the bottom of her incision far too soon. (The glue is there to protect the incision along with being used instead of stitches on the surface to help with the scar). We were concerned originally when we saw it being put on the glue but just let it go. I really don't thing THAT is going to happen again!
Thanks again to everyone for your continued prayers and concerns. It has definitely been felt here!