Home – 4/4/17
John arrived home this afternoon around 3pm. The hours leading up to his arrival were filled with anxiety. I was home pending the arrival of his medical equipment; oxygen concentrator, pulse oximeter and oxygen tanks. Ivan, the delivery man for Life Tech, called in the morning to let me know he would be there at 2pm with everything we needed. He explained he was coming from downtown. Then, I would drive the portables down to the hospital, downtown, to transport John home. I spent the morning cleaning the house and stocking the fridge just feeling excited and scared about John’s arrival. Around 1:30pm Kevin called and said Ivan is delivering the portable tanks to the hospital at 2pm so Kevin can be discharged. I was happy to hear he was being discharged but sad that I wouldn’t get to say goodbye to all the amazing folks that supported us the entire month. Kevin called at 2pm, he’s on the road. The oxygen tank John has only holds an hour and half. In the meantime, the supply company’s dispatcher called me to say they won’t be delivering the equipment for 2 more hours. I panicked letting them know John cannot go without oxygen or he destats, we need it here at 3pm. After about 15 minutes the dispatcher called me back letting me know they have rerouted home and he will be on time. Hallijewah!!
All this panic and stress reminds me of the medical supplier days when John was vented and trached. Dealing with the discrepancies, deliveries, always late and nurses! It was such a stressful time and I am sure that was one reason why I self-medicated with alcohol most evenings.
Today, John is home. Everyone is congratulating us and telling us how blessed we are. But, I can’t seem to be happy. I feel like we have taken such a large step back. I want to believe he will recover from this but am fearful he won’t. The idea of going through this again makes me sad. I really don’t know if I want to cry or laugh.
I am following my happy clown of a son around with 25ft long oxygen tubing attached to a portable oxygen concentrator. The concentrator is a large heavy gray box on wheels that has a rhythm of oxygen pulsing through it. He went downstairs to play Wii bowling and constantly had to be told to put his mask back on. On the way back upstairs he barely made it up having to stop and take a break half way through. We figured out how to give him a Neb which seems to bring back his pink color and he decides he wants to go upstairs to use the computer. After the 10 minutes of rearranging everything upstairs he wants to go back down. I accredit all this movement to spending so much time in the hospital he just needs to move move move.
I am happy he’s home. I am happy that I do not need to drive 10 miles every day to see him. I am happy that he is breathing better and that the doctors trust me enough to let me go home with oxygen. I am sad that it has to be this way. Someone posted on my Facebook “Now you can get back to normal”, whatever normal is. This isn’t normal for anyone. But it is our normal for today. Another person said “He looks so good and healthy”. I guess that’s relative? If occasional blue lips look healthy? I admit, as much of an open book I am, I do not always let people see all the bad. I share a lot of the good stuff, the corners turned, the leaps and bounds, the miracles. I understand why people say he looks great. He really does look great. But, they didn’t see him 30 minutes earlier destating to the 40’s while his entire head turned blue.
I am not sure what I am trying to get across here. I feel like I am justifying why I am so unhappy or sad about where John is medically. Even though he has come far in the last month, it’s not where he was before this all started.
My life practices tell me to be grateful. We always have something to be grateful for. There are times when I am writing my gratitude email thinking, “I wonder if they think I am being sarcastic?”. I am grateful for oxygen, for portable tanks, for hospital staff and that we finally got some fresh air today. My gratitude list sets the bar low as far as gratitude goes. Others are grateful for their vacation homes, for having an extra day off to take care of business, for their families and so on. Maybe I should shoot higher with my gratitude but I don’t want to. I feel myself resenting my gratitude’s – is that even possible?
Meanwhile, as I write my son is shouting “Namaste!” over and over again. My friend Tori and I use that as a bad word a while back. He is trying to make me happy by using good words. He knows that makes me laugh.
I am so grateful for this broken child that has so much love and laugher in his heart and that he wants to share that with me.