Hannah has been doing ok but at 1am New years day, the nurse woke me up and said she couldn't get her heart rate out of the 30's no matter what she did. We tried to wake her up moving her around and everything...she was very pale and it scared us. We finally called 911 and they tried to wake her up too, it was decided to take her to the ED. When I took her off her vent and put her on the stretcher she finally woke up. Her heart rate went back to nomal then but we figured she needed to be seen anyway since we were on the way. of course when we got there she was "normal". After they finished fooling with her she started to go back to sleep and it only dropped in the 50's and 60's but as they watched, her heart rate kept "pausing" it would do 5 beats, pause, 5 beats, pause, 2 beats, pause and then do regular beats and then back to pausing. The dr there called the medically complex team here and told them what was going on and he decided she needed to be seen here at dupont.
i ran home when they decided to transfer her and took a shower to help wake up and pack for a least a week,, just in case. I went back to the hospital and got there when they were ready to take her so they told me to follow them.
We had only gone a few miles and they pulled over. the nurse ran back and told me Hannah was fine that the driver didn't feel good so they switched. We went on for a while longer and they stopped again to tell me that the driver was really sick and they needed to take a detour to Chester River Hospital to drop her off. After we finally got back on 301 we had to wait for another ambulance to come and give us another medic, since they were short. They finally got there and made some switches and the new ambulance went back and picked up the other medic and we continued to dupont. Everyone here laughed and said I couldn;t have made that up! I am glad I didn't just drive from home,, I would have been really worried where they were. It took over 2 hours to get here.
When we got here they put her on the cardio unit, not our usual 2A :( She made out fine except for a few seizures from not having formula or meds all day. They watched her all night and heart rate was fine. They do want her to wear a holter event monitor for about 1 month to see what is going on. We didn't get it yet. they did bloodwork and thought she might be in metabolic alkalosis again but after they repeated it, everything was ok. They said we could probably go home today but I asked for a couple consults. She had an appt scheduled friday morning with nuerology and tuesday with nephrology. the nephrologist came in it was the one we hardly ever get to see, so that was nice. He said he wants to repeat some labs next week from her port and since she has her port we can get labs more often and maybe not have to come in as often :) I agree! Neuro came in but our appt was with the NP and nutrionist so they are trying to get her to come in, i already saw nutrition.
so, staying an extra night is worth not having to come back for 2 appts later. They are supposed to be moving us to 2A but it hasn't happened yet and it's after 3:00
As usual life with Hannah is never boring and she never follows the rules...maybe an extra night is not such a bad idea after all.
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