Tuesday, April 26, 2011
How do you describe the rollercoaster that you ride when parenting a medically fragile baby? I HATE rollercoasters. I always have. Even the tame, baby ones make me feel sick and shaky.
It seems to start off slowly. A couple more alarms. A little more oxygen. Maybe we can’t turn it down as soon or drop it as fast after a hypertensive episode. Then a little more oxygen. I start to get a little irritable. I can’t focus on much of anything else for very long. I’m always checking and rechecking his vitals. I can go weeks without taking his temperature, but when he starts acting “off,” I take it ten times in a day, and that’s if each time is normal.
We still can’t turn the oxygen down to where he usually is, and I start doing CPT, a lot of CPT. And suctioning, even though we’re really not getting much out. Is his diaper wet? Dirty? As much as usual? Checking and rechecking oxygen tubing and connections. I start to get a knot in my stomach. When I’m gone, every time my cell rings I wonder, is the problem getting bigger? I can’t pay attention to anything else, but I also need to get out of his room and stop looking at his monitors. I’m agitated. Worried.
I make the call to PCMC to talk to a respiratory therapist and get probably the only one who isn’t familiar with Aaron. We go over things, and he really can’t tell me much without seeing him, but right now at least, it’s probably not emergent. He suggests changing the trach. It’s crossed my mind. But it is so traumatic for both of us, and it’s never been plugged before. But we’re still going higher. Even higher than yesterday. So I steel myself. And I tell Aaron we have to do it.
I hate trach changes. And they never help. But we do it. And I hate it. And he hates it. And he cries and cries. So I hold him and rock him and I want to cry too. And then I suction some more. And no, the trach is not plugged, at all. There’s nothing on it. But then, his numbers start changing. And he’s in the high 90’s. And he stays there when I start to turn down the oxygen. Then I see a 100%. So I turn him down some more, and he stays high. And he’s happy and playing. He’s down even farther on his oxygen usage. In fact, even though he’s eating which requires a lot of oxygen, he’s almost down to his baseline, lower than he’s been in the past 36 hours. And my heart rate comes down and my stomach unclenches.
Is he all better? No, not quite. He’s still a little high. He’s probably got some minor virus, but I feel like the ride is coasting into the station. I can get off, for a little while. And go find a ride I like better, like the Ferris wheel, or the carousel. Until the next time the ride takes off...
Saturday, April 23, 2011
Last Sunday I took Aaron to church. It was such a wonderful feeling to have him there. Last summer when we met with Dr. Knorr for the first time with Aaron, I asked about taking him out. He asked what my goal was for Aaron. Some parents want their child to experience everything they can, because they aren’t expected to live long. We felt like we needed to give Aaron the best chance he could have at living. So I replied, “To keep him as long as I can.” He told me not to take him out to church until after cold/flu season, at least April or May. So we took him to the Primary program in September and the Christmas program, but both times we came in after the meeting started and left before it was over. Last week I got to have him there for the full time. The last speaker was talking about miracles, about how when we have exhausted our resources, angels can come to our aid. Specifically he referenced the Martin and Willie handcart companies. When Brother Scherer closed the meeting, he paused and said, “Speaking of miracles, we have Aaron Peterson here with us today. That is a miracle.” Of course, I teared up.
On Monday evening, for Family Home Evening, we had an Easter lesson. It involved pictures of the Savior and his ministry along with readings and songs. As we sang, I noticed that Aaron was waving his hand, in time with the music. As we would stop singing, he would stop waving. I really feel like he knows the music about the Savior. He knows he is loved, not only by us, but also by Jesus. I went back and reread the talk giving on Saturday morning in General Conference by Elder Kent F. Richards, “The Atonement Covers All Pain.” That was the talk where he spoke of the girl who had surgery to remove a brain tumor. When she woke, she identified several family members in the room who had passed away and were there to help her. Then she told them that all the children in the ICU had angels with them. I’ve been in the ICU, more times than I wish. As I think of those experiences, and our experience in the NICU, I feel sure that those children do all have angels helping them.
Tomorrow is Easter Sunday. I think it has become my very favorite day. Christmas is wonderful, but without Easter, it would just be another day. I was talking to Michael today about Easter and we were talking about the resurrection. He remembers last fall when Lady died, and he remembers how the last several months, she really didn’t run or play at all. And he misses her. We talked about how after the resurrection, she will not only be alive but well and playful again. Then we talked about Aaron. I know we get to have him back, but it really became more real to me as we talked about how he won’t need the ventilator to breathe. He won’t need a feeding tube. He’ll be able to run and play. He can play soccer or baseball, or shoot hoops, because he will have a perfect body. I am so very grateful for my Savior and His willingness to die and then live again so that we can too. Not only will I have a perfect body, my baby will too. He will not hurt or get sick, he will grow and play and talk and sing. Tomorrow when we are all at church, it will be the first time our whole family will be there together for all the meetings since the week before Mother’s Day last year. I can’t wait to take the sacrament and renew my covenant to always remember Him. Sunday will come. After the Fridays of our lives, Sunday always comes.
Saturday, April 16, 2011
I have a lot of friends, casual friends, or maybe circumstantial friends. I don’t mean shallow people, but people whose company I really enjoy when I’m around them, but am only around them at certain times of the year. Like my soccer mom friends, or my baseball mom friends. We have fun laughing and talking, and help each other out with rides to practices and games, but really don’t see each other much in the off-season. See, they’re busy with their families, and I am with mine. Not to mention that just over a year ago I kinda checked out emotionally, and really checked out physically ten months ago. So there are a lot of people I once connected with that knew I was pregnant, but really haven’t seen me or heard anything about me since Aaron was born. Or they might have seen us a couple times last fall, but really haven’t had any information since then. I almost feel like I’m coming out of hibernation. So then there are the questions. And they are mean well, but I don’t know how to answer them.
Last week I ran into one of my soccer mom friends at the hospital, as we were taking Aaron in for an echo. Now, to transport Aaron in the hospital, it requires a respiratory therapist, a nurse or tech, his IV pole, oxygen, suction, monitor, and emergency go bag. It’s a good thing he’s so tiny, because there’s a lot of equipment on that full size stretcher and there’s not a lot of extra room with all of it. So I imagine it’s pretty intimidating as we come down the hall. I don’t usually think much of it. It’s our normal, but every so often, it hits me how it must look to someone new. Anyway, she was there, painting a mural on the hospital wall to help make it cheerier. And doing a great job. I haven’t seen her since last spring, when I was still pregnant. She asked if it was my baby, and if he was going to be okay. I had no idea what to say. I wanted to stay and talk with her. We used to have a lot of fun, over several seasons, visiting while our sons played soccer. But I had to keep going with Aaron. So it was a quick, “Um, no, not really.” Because for so many, and me too before this past year, okay means able to run and play and get into trouble. To grow up healthy and strong. He is his “okay,” but not that “okay.” So what is the answer? How do you answer questions like that?
People who know what’s going on ask, “How is Aaron?” And that’s easy to answer. “He’s doing great.” Or, “He’s kinda squirrely right now.” Or, “I’m worried and really not sure.” It’s the others who ask, “Are they ever going to be able to fix your son?” Or, “Do you know how long he will be like this?” Because as wonderful and blessed as we are to have him, the doctors can’t fix his tiny body. And although I’d love for him not to need his life-support equipment, I really hope he’s going to have it for a long time, because if he doesn’t need it, he’s probably passed on. But how do you convey that although you’re heartbroken at his challenges, you feel so overwhelmingly blessed to have him part of your life?
I’m thinking of taking Aaron to church tomorrow. I’m not at all worried about him, or taking care of him there. If there was any question about him not doing well, I’d just stay home. It’s actually the others I worry about. Babies and children make noise in church all the time. It is no secret that sacrament meeting is not really a quiet meeting. But we generally tune out the whispers and cries, and sometimes loud comments from toddlers still learning. Aaron won’t do any of that, but he will beep and alarm. That’s what he does. And I can’t turn those off. I can’t suction him in the meeting, but I worry that leaving may cause others to worry. But it’s nothing to worry about. It’s really a lot like taking a kid out for a diaper change. It’s not a big deal, but not something you would do on the church pew. But while it’s my normal, it’s not other people’s normal. And I don’t want to cause them to focus on me instead of on the Savior and the reason they’re in church. Oh, I’m not self-conscious enough to feel like I need to hide, or stay home, but it does give me pause for thought. I just hope in time that his beeps and bells become like the other kids’ cries: something to tune out and not even realize are there.
So this is where my mind goes. This is what I’ve been wondering about. Which, I guess is much better than wondering if he’ll be able to leave the hospital. I can do without having to think about that for a long, long time.
Wednesday, April 13, 2011
Friday, April 8, 2011
William just called and I feel like a fool, but a grateful fool. The green "tree" on the concentrator (where the O2 hooks in) was really loose and caused most of the oxygen to be lost before getting to the ventilator. So it was probably all mechanical, but a simple fix - tighten the stupid connection. I've gotten used to tracing his oxygen line when he struggles to make sure it's all plugged in, but never thought about the connection. One more thing to put into the checklist.
But some of his labs are a bit squirrley so they're going to watch over night. They want to make sure the skewed values are related to the stress of trying to get enough oxygen last night and not something else brewing.
|Hanging out, looking good, in the ED|