Hi Steph, how did things go through the weekend? Some of our friends found it easier to stop by our home on weekends while I was recovering. I hope the same is true for your family. Did Carter get some playtime with friends in there? I didn't have a youngster at home during my convalescence, and I can imagine that it's a challenge for you all!
Welcome to the best place possible to receive and give support with comrades. I am so glad you found this site. Reading the responses of others to your introduction was heartwarming. To everyone who participates here, I just want to say a really sincere thank you. We all learn from each other, and the compassion and humor others offer is lifesaving :-)
How did the benedryl cocktail work? What a great idea, and I hope to hear good news on that subject. I never knew about that but wish I had! I had to sleep sitting up and with a suction machine at my side for using a couple of times each night.
About the PEG, my opinion is that it's not hurting anything if it gives him the security he needs--sort of reasserting his claim to the fact that it's HIS body and he has a choice. He is not going to starve. It's astounding that his swallowing is so good! YAY! That is such a huge blessing!
Food was an especially emotional issue for me because I was not friends with my mouth any more. I had changed my thinking all through the ordeal NOT to expect to receive any benefit at all from that area of my body. I did not want to feed it--the source of all my troubles--did not want to "take it back." Swallowing hurt so badly and woke up all of the pain in my mouth. I really needed to tell people to let me deal with this on my own pace, and I gave my very loving family permission to suggest or ask but NOT to "tell" me to eat. And if I said "No thank you" that was it for at least 20 minutes. After all, it's MY body.
You may well have already considered this point of view, and if so, at least this is more validation. I so empathize with you, Craig, and Carter. I would encourage you and Craig to discuss the depression with the doctors. Even if you have to express it as your own depression, he will benefit without feeling...uh, more depressed. Your life as a couple and family is so vitally important that if you raise the issue during an appointment, your doctor will surely try to help you. This is so very very common among patient families. And we all know how important mental strength and optimism are. Your own constructive thinking is helping a lot, even if you don't say those things out loud. Sometimes silence is golden.
Do keep us posted, Steph. Thank you for sharing your experiences with us, and please know our thoughts and prayers are right there with the three of you. I hope you have a good supportive environment in your neighborhood and other family members.
After this week is over, I'll bet you anything that Craig will start feeling better. Now is the worst, and it's not for long.
Warmest regards,
Carol
