We made it home around 3 yesterday. It took a while to unpack all our new equipment, but I did and feel pretty organized now.
Yesterday morning early Kendall's blood sugar dropped pretty low. We were forced to give her Apple Juice (not an easy task since she wasn't eating well) After the same scare twice, we changed her Lantus back down to one unit. When we came home my head was spinning.
Kendall's demeanor immediately changed when we arrived home. She drank a whole bottle and went back to sleep. She's been fussy, but nothing like in the hospital. We've seen some smiles and improved head control.
I have myself so worked up that I can't leave Kendall for a minute without watching her. That seizure traumatized me. I'm terrified that if I'm not watching her and find her unconscious, I won't know if its a blood sugar thing or a seizure thing. Do I administer the Diastat, or the Glucogon? Will I be able to keep calm long enough to figure it out? Let's pray so.
We had a delightful nurse come by our house and do our evaluation. I'm still waiting to find out how many extra nursing hours we will be able to get. Right now they pay for 3 visits a week. There is a possibility we can get up to 70 Respite Nursing hours a week since Kendall can't go to Daycare, etc... And while I think this nurse could potentially be great, it would take me a long time to trust anyone. But it would be nice to be able to leave her with someone who is qualified to deal with all her medical stuff while I go to the grocery store, do stuff with Kamden, have a date with my husband, or go running. I'm not convinced I would be OK leaving it up to someone else to work with her and be responsible for all her therapies, etc, but the extra help would be great.
Today it seems like Kendall and I are in recovery mode. I am physically and emotionally spent. I think she is too. So, we will rest today and try to get back to normal tomorrow. Speaking of normal...the nurse last night told me "the only thing that's normal is the setting on the dryer."
Thanks again for all your prayers and support. Every time I check my phone or get on the computer, I am reminded how lucky I am. My family and friends are the best.
Relentless bad days
10 hours ago