Had a visit with Cami last night. She was so happy to spend time with her daddy. He is her most favorite toy.
Sadly she didn't seem as well as she did earlier in the day on my first visit with her.
The outlook was promising however and we had high hopes of bringing her home with us today before having to head back in tomorrow for further testing to check how she was doing on only oral medications.
Just spoke with the resident cardiologist and set up an appointment to meet with Cami's cardiologist today at 3pm.
We more than likely won't be bringing her home with us today. A few symptoms have come into play and they are not sure what the causes are. She had a 30 second period this morning where she was "bobbing" her head and the tech assigned to her felt that Cami was unaware of the tech's presence during the episode. Could be a side effect of one of the new meds. Could be a neurological problem coming to light that could have been caused by a lack of oxygen to her brain. Could be an electrolyte imbalance and they will be doing blood work to check on that. When it happened her heart rate started out at 150 and dropped down to between 70 & 80 so that too could be the cause. We may never know but I don't feel it is something neurological. I feel we would have seen something before now if it were.
Her BP that has remained very stable throughout has dropped down to about 75. They would like to see it at least at 80. That is something that very well could be related to one of the new oral meds.
She also vomited again. Recovered from that and wanted to drink water and showed a slight interest in food. She sure as heck was into the treats we brought for her yesterday! I don't feel as if they are getting enough food into her, hence the oral meds taking their toll on her already sensitive tummy. They are giving her an injection of Zofran (strong anti-nausea med) in addition to her Pepcid.
On a positive note IF there is one now....she seems to be maintaining a good rhythm (arrhythmia) more often than not so the med for that is working. It won't matter though if she has to be taken off of it due to side effects.
I suppose the plan now is to give these meds another 24 hours. Ride out the storm so to speak MINUS continued side effects/symptoms. See if she can get over the hump since they are helping. Could also change them up completely and see if new meds can help as well without producing side effects.
We are growing very tired both physically and emotionally. I am trying to stay positive. I wish I had better news to share and actually prayed that my next post here on BW was of Cami's homecoming.
I can't thank all of you enough for your warm well wishes and prayers. I imagine night skies filled with stars shooting upwards to Heaven and God grasping all of your prayers and combining them together to perform a miracle for my sweet girl.
My home, now quiet since she has been at the hospital..... is the loudest noise I have ever heard.