Today Bernadette probably had one of her roughest days yet, in a way, or maybe it was the roughest on us or both. She had a half decent night with Joseph and was waiting for me when I got up this morning. She threw up once but not very much. At 10:00am Dr. Gervais came for another Vitamin C treatment and again she started complaining about her tummy being full and hurting – a lot. I gave her a break through dose of Morphine during the treatment and Marc did it once an hour later. Well, today’s reaction to the Morphine was completely different, she ended up being delirious the rest of the day. She had moments where she was with it, but there were other times where it was obvious she wasn’t. Even though this is an extremely serious situation, I’m sorry but we couldn’t help but laugh at some of the things she said. A lot of it just didn’t make sense and I couldn’t understand her and there were times when I’d just acknowledge that she said something and then ignored whatever it was because to get her to explain herself didn’t help or I knew she wasn’t serious. But there were some doozies that will forever stick with us. Here are a few:
1. She reached out her hands to me and I took them and asked her what she wanted. She said, “I’m looking for my hands.”
2. She asked me to rub her feet. Then she told me maybe I should wash them. I asked her what she wanted me to wash them with and she replied, “how about toothpaste.” Again a few minutes later she asked me to wash her feet. I asked her what she wanted me to wash them with and she said, “Toothpaste!” So I asked her if she wanted me to brush her teeth and she said yes. Being the brat that I am sometimes I asked her where her teeth were and she pointed at her feet.
3. She reached out her hand and I took it and she said, “I’m giving you a present.”
4. She asked us to turn down the fan that wasn’t on. When she insisted I turn it down I tried to tell her it wasn’t even on and she then demanded that I move it. I asked her why. She said, “It’s blocking my way.” I asked her what she was trying to see and she said, “I’m looking out the window.” She didn’t even have her eyes open and it was pitch black outside! Still, Joseph humoured her and moved the fan. She didn’t even notice.
5. At one point she wanted to do something. I asked her if she wanted Catherine to come play with her. “No.” “Do you want Daddy to play with you.” “No!” “How about Zoe?” “NO WAY!!!” So I asked her if she’d like Mommy to come play with her and she said, “Yes.” No Zoe, eh? Gee, tell us how you really feel there, Bernadette.”
6. She asked me where her short hair was. I told her it was right there and she demanded that I give it to her. ???????????????????
This sort of thing went on all day. She asked for a mushroom. At one point she cried out for us to wait up for her and to carry her downstairs. She wanted anyone but Daddy to bring her a new juice box. Wanted to know what happened to her cereal bowls from yesterday. And all this with her eyes closed. She barely opened them all day. And yet when I asked her if she remembered whose birthday it was today she knew it was her friend Kirsten’s and that she turned eight. Sometimes I laughed but most of the time it was all I could do to fight back the tears. Just ask Pat, Bernadette’s godmother, who sat with us for almost five hours this afternoon.
So much has changed in just one week and we don’t know if it’s just the morphine, if she caught a touch of the flu, or if some of what Bernadette’s experiencing is an effect of the vitamin C killing off bits of the tumours and it’s flooding her system with toxins. It’s just so hard to know. What we do know is that she’s so weak that she can’t walk to the bathroom any more, she can’t lift herself up, if she’s sitting up for any reason she just throws herself back down on her pillow, she barely opens her eyes, hasn’t eaten anything since Wednesday last week, hasn’t played on her iPad since Thursday, and today she suddenly had a craving for five juice boxes. She never drinks juice!
The other big change is we’re also getting as much night nursing as we can. We were surprised when Sothear (don’t pronounce the ‘h’ or the ‘r’ and you get Sotea, very pretty name) was able to come tonight already. I originally heard Sophia was coming but it was Sothear. Bernadette met her back just before Christmas.
So to our big surprise, Marc and I have tonight off. We will sleep better knowing a trained nurse is watching Bernadette for now. It’s not that Joseph and Johanna can’t do the job but Bernadette’s level of care has just escalated so much.
Oh and to end on an amazing note. Marc came down to the family room this morning with tears in his eyes. He’d just received an email from work that said they were matching the employees donation of vacation time. Marc doesn’t need to return to work before sometime in April. What a totally wonderful and amazing surprise!
Still with you all in Spirit across the miles. In Edmonton we are dealing with the death of two Redemptorist priests within the same week. Lots of time for prayer here, so I am praying for you, Patti and Marc and your family and all the friends and professionals surrounding you. I know I am saddened by the deaths we are going through, but when I heard about Marc getting off work till April, tears came to my eyes, more of gratitude I believe. I am so grateful that people still pull together in a community and this is a great example.
Patti, laughter is good for the soul! Sending our love ,prayers for continued blessing, grace and healing to one of our most cherished families!
I must tell you Patti, you are such an inspiration to me & so many others. When I have a bad day I try not to complain, I think about what your going thru & shut my mouth! We continue to pray for all of you daily. God’s blessings on little Bernadette & all of you.❤️
Prayers and Hugs. Thanks for sharing.
I’m so happy to hear she could come in last night!!!! I hope it went well!
I enjoyed chatting with Marc last night. May God continue to bless you all in your steadfast faith. I was glad to hear you were able to enjoy some comedic relief today! You might as well take in the “funny” while you can. Our prayers are with you daily. We hope you were able to get a very solid night’s sleep!
My heart goes out to Bernadette and your whole family. This is a moment in time you will treasure in years to come. Love and prayers sent your way.