Hi Everyone,

I have been so upset that I almost didn’t post a note tonight. Our transition home was Episode 7 in the reality series.

When I arrived, Corey didn’t look well. She had a cough that sounded like she had alot of mucous in her chest and she was sneezing. She had been pulling on her right ear all weekend so I asked the Doctors to look at her but they didn’t feel she had an ear infection.

Corey’s discharge process was very confusing. Unfortunately Brian, Corey’s usual day nurse, was off today. We had a nurse I never met before review the discharge papers with me including the prescriptions that were called into the Giant Pharmacy. We left Bryn Mawr in a wheelchair van from TransCare. The ride was very long, bumpy and noisy (the driver was speeding and in my opinion not driving with care and poor Corey was jostled in the back of the van the whole ride) she was wiped out from the ride. I will be contacting the transport company tomorrow to share my concerns.

We arrived home and it was just Caitlin, me and my sister Louise. We showed Corey her new room and bathroom. Caitlin picked up Amelia and the second Corey saw her she reached out to pet her. She seemed happy to see her but something was still off, Corey was not feeling well. I thought it was the ride.

The nursing manager for the skilled care company arrived by 1pm. Eileen was amazing and thank goodness she was here because this is when the chaos began. We called the Giant to tell them that my sister would be picking up the Rx. That’s when the pharmacist told me they had received the fax of the prescriptions and they did not have the Brand name nor the generic versions in stock for 3/4 of them. I immediately called Bryn Mawr to get answers. They knew last Wednesday that today was the discharge date. I was livid that the prescriptions were faxed at 11am today. In addition to that, one of the Rx is not covered and one of them needs 3 days for pre-authorization. Thank goodness we have been with the same pharmacy for years. We were able to get enough seizure meds by 3:30 and the rest of the of the medications should all be in by 2pm tomorrow the syringes should be in by Friday.

We received a call from Apria Healthcare, the company we are renting the portable suction machine from. They are also supplying the feeding pump, bags and food. When they called to deliver the suction machine, I asked if they were also bringing everything else. They had no idea what I was talking about because the food also requires pre-authorization. Now my blood pressure was rising! Corey was supposed to start her feeding at 4:00, it was 3:30. I must say that Apria is amazing. They called the local branch. They had a courier deliver 2 cases of food to carry us until the shipment arrives in 3 days. The dietician liaison came from one of her hospitals in DE to deliver the pump and bags. Corey was eating by 4:30.

Unfortunately she was still not settled. I’m very sad to report that tonight she has cough, runny nose and fever of 101.8. Tomorrow we will be calling her primary care doctor to check in.

The good news for today is our nursing company. So far Eileen, Tish and Stacy seem wonderful. We will have nursing care from 8am to 6pm M-F; Midnight to 8am M-Sunday. I have requested an additional 40 hours but I’m waiting to hear if that will be approved. I am currently going to be on my own from 6pm to midnight M-F and 8am to Midnight Saturday and Sunday’s. If we don’t get enough hours approved for the additional help, I will be sending up the flare to all my nursing girlfriends (I’ve already started my list of helpers…thank you ladies for reaching out to me…standby!)

In the last 8 months I have tried very hard to be optimistic and always close with something that is inspirational for me and Corey to hold onto in order to appreciate the good of the day and prepare for our next 24 hours. I’m not going to say that I’m at a loss for gratitude tonight but it is sometimes difficult to look for the positive…but here it goes…

My sister Diane came down on Friday and left this morning. Her visit was invaluable. She helped me organize my thoughts and my house, helped me with the van pick up and was incredibly supportive when I became overwhelmed. Today, my sister Louise arrived. Thank goodness she was with me throughout this day. She was emotionally supportive and willing to run out multiple times to the store for a number of forgotten items. Caitlin was amazing! She was the calm in the storm. She showed an inner strength that manifested itself into a calming force that set the balance for several hours for me. My two brothers called to lend their love and support. Several girlfriends also called. Neighbors came over to say hello and also lend a hand.

Corey do you remember the book ‘Alexander and the Terrible, Horrible, No Good, Very Bad Day’? We had one of those days. I know how difficult it was for you today and I know that tonight you feel really sick. We are going to face challenges like these and you will get sick from time to time. We are not alone and it looks like we’ve got a great team of nurses to help us through whatever should come up. Just because we’ve had a terrible, horrible, no good, very bad day doesn’t mean that tomorrow won’t be better and it doesn’t mean that every day will be like today. Sleep well, you’re home now safe. Rest and know that you are in good hands. WE are in good hands. Tomorrow we get to start all over. Happy dreams honey, I hope you feel better in the morning. xoxo