We arrived home yesterday after a very stressful port surgery. Annika didn't get called to the OR until 8pm at night. She went all day without food or drink,, and handled it very well I might add. (although mommy had to trick her and place bandaids over her nipples and tell her boo-boobs where broken) She accepted this, which was a God Sent!
Once finally into the OR, I informed the doctor in charge of her meds. and drugs that she is a hard knock out. Of course I got the pat on the back and a nodding smile. Oh how I hate those smiles. Those smiles tell me" Yes mom we know you think you know everything about your daughter, but I am the doctor" Sometimes I would like to box those smiles into the next room. So we proceed with dosing Annika with Midazolam, 1mg funny thing is she didn't get sleepy, or drowsy. Actually the doctor was surprised by this. So surprise I got to accompany Annie into the OR on a gurney ride. She got more of the same drug. Nothing. The doctor got called away to the phone by OB. When she came back Annika proceeded to wave and comment"hi" to her. I remember looking at her and asking" do you believe me now?" Of course with a very wise ass smile! She replied how shocked she was and proceed to give Annie two more injections , which finally did the job.
I was escorted to the waiting room, where I was advised the surgery only takes 45-60 minutes. You can imagine the condition my nails where in when we hit 1 1/2 hours and still no one out to get us. At 2 hours, I started pacing and looking down the OR hallway in time to see and hear my screaming angel rolled into recovery.
The surgeon told us she had a really hard time threading the port, that her veins are extremely small, and she kept hitting the bone in her neck. She said we made the right choice to do this procedure, she could only image what placing a picc line or IV would be like.
Annika was out of recovery and nursing my now miraculously healed boo-boobs. She was content, but in pain. They gave her codeine and tylenol and we went to sleep. We had arrived back to our room after 11pm. A crazy , long day.
The next morning Annika was complaining of a lot of pain, and she had a lot of bruising because the doctor really had to work at the port to get it in. Her poops have been pure water coming out, and we had her on constant drugs for the pain. This cf and c-diff thing sucks. Like one isn't bad enough by itself.
I was so glad to hear we would be going home the next day if the port could be accessed. It was, not without the screams of Annika. Poor thing.
So to get to today.
Last night was the first day on home meds, and besides a delay because they sent the wrong meds....everything went smoothly.
I did her IV's this morning at 7:30 am , and she is due at 3:30 pm and again at 10:30pm. I will be doing all the meds. A nurse stops in to check on me once a day. She will have her access changed this coming week, and next week. Only fourteen more days of meds to go. Her cough is totally gone. Now we just have to get the poops and weight loss under control.
Annika goes to Toronto to see Dr. Durie our GI specialist , and I am sure he is going to state a GI tube is necessary. Which Dave and I have already agreed on. We need to get her weight up to keep her lung function high. Her survival depends on it. So keep us on your prayer list, I am sure there is more crazy hospital visits to come!
