Sunday, April 26, 2009
Jason and I talked and thought that maybe we might be able to take Grace to all three hours and attempt to go regularly. Well today we tried to stay for all three hours and it was so nice and Grace did great. Each class we sat in the back corner away from everyone. Whenever we went in the hall, Grace was in her car seat and covered. Since I'm new to the Ward, during Relief Society I was asked to introduce myself and I did---I also told them all why I sat in the corner and asked them to stay away if they had any signs of a cold and all the sisters seemed to understand.
I know we are still in the tail end of RSV season but there comes a time when you have to attempt to resume some type of normalcy. Plus I really have been needing the strength, uplifting spirit that comes from attending church and really focusing three hours on my spirituality. Though I try, it is so hard to devote time to reading scriptures and praying at home with Morgan and all of Gracie's care. By the time they are in bed and things are ready for the night, I crash--without fail I fall asleep praying in both my personal prayers and when I pray with Jason.
Hopefully Gracie will stay healthy and not catch anything and we can continue to reap the benefits of attending church---even Morgan was excited to be able to attend Nursery and play with friends for the first time in months.
Tuesday, April 21, 2009
I was making dinner last night and went to check on the girls only to find that Morgan had dumped the basket of diapers all over Gracie. Grace doesn't seem to mind though.
Thursday, April 16, 2009
I don't think she is enjoying it as much as I am, but she did try to laugh, hence the hiccups.
As many of you other heart families may know, these little ones get addicted to some major narcotics and as a result must experience detox and to help them wean off of the narcotics they are given other controlled substances to help ease withdrawal. Anyways, Gracie again came home on an ativan/methadone wean, slower than they typically try to wean, but faster than I think is really necessary... Well Gracie has been struggling with the wean, so I have slowed it down with the advice of our family doctor, as a result we have run out of the liquid life saver since the docs only prescribe the exact amount with no refills.
Wednesday I realized that we were very close to being out of methadone and didn't know what to do. Our doctor is out of town, so I couldn't call her office, so I called Cardiology up at Primary's, I left a message and waited. No return call, so first thing this morning (8am) I called again and spoke to the receptionist. I explained that we HAD to slow down the wean because Gracie was having severe withdrawals--increased vomiting, diarrhea, and fevers once we went from three times a day to twice a day. I told her that this morning I used every last drop and it still wasn't enough to equal the does she was getting. The receptionist told me she would mark the message as priority and that I should hear back within an hour or two from the nurse, once she got in. I asked if she wanted to know where we were on the wean process, but she assured me that the nurse would find all that out.
So I waited and waited, finally around 3pm I called again, I spoke to another receptionist that wasn't too helpful. She checked the notes and I guess the nurse was waiting to hear back from the cardiologist to know what dose to prescribe. I asked why I never got a phone call and the receptionist said that the nurse must have been waiting to hear from the cardiologist. I explained that it didn't make sense because how was he to know where we were on the weaning process, especially since we slowed down and deviated from what was prescribed. The receptionist assured me that the cardiologist would know since he could look back at Grace's discharge orders---stupidity if you ever asked me---unless the cardiologist is psychic too---he isn't going to know. So I explained again that Grace had no more methadone, that she is highly addicted and extremely aware of when she is late with doses (ask any nurse who has ever worked with Grace). All the receptionist could do was tell me that hopefully I would hear from someone today.
Well 5:30pm rolls around and nothing, so now I'm freaking out, I have 2 1/2 hours to figure out what I'm going to do. I thought, well I could increase her ativan dose, try to knock her out with Benadryl all night and get through till morning. I called our home health nurse for advice and suggestions, because she is wonderful and knows so much and she said I could increase her ativan dose if I had to but that I should try calling again and ask to speak to the cardiologist on call. What brilliancy, because, within 5 minutes I was talking to a cardiologist, who understood the urgency of our situation. He wrote the prescription and was even going to fax it down to the pharmacy, but because it is a controlled substance I had to go up to get it. It now being 7pm I had to get the prescription and fill it all as close to 8pm as I could. So I left home rushed up to the hospital (about 45 minutes away), waited about 10-15 minutes for the cardiologist to meet up with me and rushed back down to the pharmacy to fill the prescription which took 30 minutes.
I am pleased to announce that I went to Primary's and back in 1 hour and 15 minutes, got the prescription filled and had it in my little Gracie's stomach by 8:30pm, only a half an hour late! I'm super mom! So I love the cardiologist that we get to work with, but absolutely despise working with the clinic over the phone, they need to learn how to better assist and help their clients....lesson learned--if you need to speak to a cardiologist, just wait till after hours!
Monday, April 6, 2009
Being home is wonderful, but oh so difficult. Gracie loves being home but she is still having a hard time, she sleeps a lot but is awoken easily due to all the secreations in her throat and nose--all I have to do is turn the suction on and she freaks out. We were sent home on an ativan and methadone wean and well Gracie is despising every minute of it, why do the doctors at Primary's always want to rush the weaning process? Luckily our doctor is willing to extend the wean to help Gracie so we don't stress her out too much because we all know how much she loves her 'drugs.'