The Long Version

What a long day!

I barely slept at all last night, I was so anxious about the cath and whether or not Drew was sick. He had started coughing yesterday, but just a little bit and with no other symptoms. We drove out to Palo Alto, but with a feeling of dread. Then he seemed to stop coughing for a few hours. Then it started up again. He went to bed and slept fine all night, no coughing. Woke up with the alarm at 5:45 so he could have his last liquid of the day (you have to fast before the cath) and started coughing again. We called UCSF, they told us to come in. I wish they would have told us right then that they wouldn't do the cath. But they didn't. On the way in, Drew was sad. He kept telling us he didn't want to go to the hospital, he wanted to go back to Grandma Kathy's. He also told us he was hungry. Then thirsty. We had to tell him that he had to wait until after the cath. It was hard for me to hear.

Then the cath was cancelled. We took him to breakfast at Crepeville right by the hospital. Put money in the meter. He had silver dollar pancakes. After breakfast we were walking out to the car and the meter maid was standing there about to place the ticket on our windshield. I said "It's not even out yet!" and she looked at me and replied "yes it is," placed the ticket on our car and drove away. And it was more than I could bear. I started crying, not because of the ticket, but just because of everything. I tried to control myself, and I finally stopped. My despair was replaced with apathy. I didn't care about anything. I was rescheduling the cath in my head, two weeks-my friend's baby shower, two weeks after that-Drew's birthday, two weeks after that-my birthday. We'd probably miss everything.

I didn't want to go home. Laundry was waiting. I still need to take down the Christmas decorations, and put the kids new toys away. I would have to take care of the kids, cook dinner. It all seemed too overwhelming. I experienced a roller coaster of emotions on the 2 1/2 hour drive home. I felt like I could not do one more hospitalization, not one more cancelled cath. I felt like I had been knocked down and I had lost the will to stand up again. I told Dan I didn't want to do this anymore. He said no one in our situation wants to do this. You just have to be brave. Like Franklin. I almost said something inappropriate about Franklin, something that involves alliteration, but I didn't. At one point Drew heard me crying to Dan and said "Mom. Why are you whining?" Then my sobs mixed with laughs. I didn't know how I felt anymore. After a while I'd feel strong again. "I'm a phoenix, rising from the ashes! I will do this, and I will do it with a good attitude. I will make a plan, I will be in control." And so it went, back and forth, despair and determination.

When we got home around 2:30 I took Drew's temperature. 100.7 I decided to call the doctor because I would be very upset if we waited til 5 and he got worse and we ended up in the ER. We were back in the car by 3 with an appointment at 3:30. By the time we got there his fever was 102, sats were around 78. The doctor heard a crackle in his lung. I hate crackles. She ordered a breathing treatment then checked his sats again. Still about the same. She ordered a chest x-ray. I really hate chest x-rays. It almost always means pneumonia. And pneumonia almost always means the hospital. Luckily, she did not see a pneumonia on the film and we have another appointment to see her in the morning. We're not totally out of the woods though, because often pneumonia doesn't show up on the x-ray right away. Tonight we are going to give breathing treatments around the clock.

While I was gone with Drew, Dan cleaned up the messy house and had dinner ready for us by the time we got home. He also had a glass of wine waiting for me. What would I do without him? No matter how bad things get, how overwhelmed I feel, he is always right here with me. And I am so thankful for that.

So, that's the long version. I'll post again after our appointment tomorrow.

The Truth

The truth is, I am weak.

Apparently, this is only a surprise to me. God knows it, and God knows my husband knows it. I guess even my friends have come to realize that I’m not perfect (gasp!). So yesterday I felt pretty out of it. I was angry at everyone, for no particular reason. I had no patience. I wanted to spend time with my kids and enjoy being with them, but only if they were behaving perfectly. And they weren’t. Ava was whining and Drew wasn’t listening to me and Dan wasn’t reading my mind so I was mad! I wanted to escape, to go and hide in my room and felt extremely guilty about it. So I spent a lot of time feeling angry and even more time feeling guilty and even worse, I felt too prideful to ask for help. I didn’t want to admit even to myself that I was having these feelings, let alone ask someone else for help with my inadequacies as a mother.

I thought I should be happy to be home. I should be happy this part is over and that it went well. I should be happy to be with Drew, because I am lucky he is even alive. Plus, in the world I live in, the world of heart defects and surgeries, a cath is not that big of a deal. I thought, what is wrong with me, that I am feeling this way? I thought no one understands me.

Luckily, I have awesome friends. I talked with a friend who told me that these thoughts are not from God. That He wants us to function in community and that no one thinks that I am perfect anyway, so there is no need to pretend. She said to ask for and accept help. And she was right. Another friend forced me to go to lunch, even though I told her I didn’t feel like talking to anyone. And I’m glad I went. I probably wasn’t a cheery addition to the group, but it was good to get out of the house and slowly but surely I started feeling better. I talked to another heart mom, who does understand my feelings. And still another friend came over to watch mindless TV with me.

So what did I learn from this experience? I learned that apparently, this is my way of dealing with stress. I can get through the hospitalizations relatively unscathed, but the day after is going to be bad. So next time I will allow for a decompression day. I will ask ahead of time for help with my family so I can have a melt-down, knowing that they are being taken care of. And I will lean on my friends.