In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
And the Mother of the Year Award goes to . . . . . ME!! Yep, I've definitely got it. You know that little issue of breathing my son has? And those all important medications, especially the newest inhaler we added? Yeah, the one that's made the huge difference since we discovered that his asthma wasn't being well controlled at all. That one.
The one he's supposed to have.
Guess what! We ran out of it. And I discovered it on Christmas morning! Oh, joy. I knew it was a little lower. And that morning when I went to give it, I thought, maybe I ought to check how many puffs are left. Zero. Not just one zero, three zeros. Zilch, nada, zip. No medicine.
That's okay. I always have back-ups. I try to keep extras of everything on hand because you just never know. Um, but apparently not this time, not this med. And not only is the pharmacy not open on Christmas, it's not one they usually stock. It was Friday morning before I could pick up more.
Now, I don't know why it was gone. Even if we hadn't been in the hospital in November, I shouldn't have run out before the end of the month, the very end. But that's neither here nor there, because it was gone.
The med we did have.
Fortunately, I did still have his previous maintenance med, the Flovent. The difference between it and his new one (Advair) is that Advair also has an albuterol component in it. So we went back to the Flovent and figured we'd probably have to do some rescuing during the time. And I was right.
Let me tell you, until you've stood over your child, giving a breathing treatment and saying, "Breathe, Kid!" and watching and praying that those oxygen sats start coming up, well, let's just say, it's a whole different kind of "rush." And frankly, while I'm not thrilled when my other kids' grades are hovering in the low to mid-70's ('cause I know they can do better), I'm much less impressed when Aaron's sats are there.
His rescue med, helps my breathing, too.
But we've got it now, and I think he's recovering from his mother's brain lapse. I did have to rescue him once more today, but he recovered really well. And while I pulled some really thick, nasty colored junk out of his trach at church, he's pretty happy and vocal in there right now. (Vocal is good, that means his throat's not swollen. That happens to all of us when we get sick.)
So onward and upward. I've labeled all his inhalers with dosing instructions in permanent marker. I'm hoping that's where things went wrong. Not sure what else it could have been, so I'm opting for the "honest mistake" possibility.
And I'm grateful that I had the education on how to deal with it, and he didn't suffer more because of my lack of oversight. And thankfully, life goes on.
As long as the world is turning and spinning,
we're gonna be dizzy and we're gonna make mistakes.
Christmas has come and gone. Or at least the wrapping and hustle and bustle seems to have. Today's been a quiet day, even more so because since many insurance adjusters took Christmas Eve off, I've been given today off. I guess that's the upside of a demand driven industry. Sometimes there's very large amounts of work (like the past few weeks) and sometimes you get more of a break. At least it's not boring, right?
Anyway, this year was another good one. I still need to put out a family newsletter. It's one of the ways I keep track of what's happened in our lives.
The big highlight yesterday was talking to David and Mary. They sound so happy! Most of the time I do just fine with them being gone. I think it's a product of several factors. They were already at school for a while before they left, so it wasn't as if we weren't used to them being gone. And there's the matter of preparing for another, longer, much more permanent "good-by." Plus, I know they're good people, they've been taught, and more importantly, learned well. It's said that a mother's job is to put herself out of work. I think they've got this one.
But, at Christmas, it's harder. I had to laugh when prepping stockings that it felt like there wasn't enough, I didn't have enough to do because there were only nine and not 11 to fill. It really did feel like I was forgetting something! And putting things out was also odd. Usually, William's and mine go under the tree since the kids take up all the couches and chairs. This time, we got the loveseat.
Each child has a Christmas bear from Grandpa Bear and Grandma Wiess, and that marks their presents. But this year, David's and Mary's really didn't have anyplace to go. So I set them behind the nativity scene. I think it was appropriate, and it made me feel a little better. Symbols of my children with symbols of the Savior that they have dedicated this time in their lives to.
Overshadowing all of this was news I received on Christmas Eve. See, Death doesn't take a holiday. He knows no calendar. On Christmas Eve, a friend's son went Home to have Christmas in Heaven. And he wasn't the only child to pass in the last week. They are now free of pain, but their mother's anguish has been magnified. A poignant reminder that this is NOT our home, our ultimate destination. And I thought of many other friends who have decorated graves of little ones instead of their stockings. And once again, I am overwhelmed and in awe of the goodness of our Lord. He knew this life would bring heartache and pain, but through His love, it doesn't have to end here.
And I think that is the true Christmas miracle.
May the spirit of Christmas bring you peace, The gladness of Christmas give you hope, The warmth of Christmas grant you love. ~Author Unknown
I keep meaning to post, to write, to whatever, but life (yeah, that crazy thing) keeps getting in the way.
I want to put up a post on how I made Aaron's weighted blanket for almost nothing. He LOVES it and the nurses and staff at Primary's raved about it.
Today, I borrowed an idea a friend put up about "snow tires" for wheelchairs and in about 5 minutes made Aaron's wheelchair much safer and easier to handle on the snow.
BUUUUUUUT, there have been concerts to attend (wonderful!) and bread to make for teachers and nurses. Plus, since I didn't ask for time off last July (seriously!) I still have to work. And someone forgot to tell insurance adjusters that they ought to take some time off. Instead, I think they're working overtime, so I have had HUGE work loads. At least it'll make for a better paycheck, right?
So where's this going? (I'm still behind, you know.) Well, this afternoon, I took a quick break to plow through some emails that have been sitting. I clicked on one, just to check it out before deleting it, and found that a picture of Mary and Aaron that I submitted had been selected to be part of a Christmas slide show the Mormon Church put together.
What a tender mercy. As I stopped and took just three minutes to watch this video, I felt the Christmas Spirit fill my heart. I relaxed and let the love flow in. And I remembered, remembered what is REALLY important.
Yeah, I still need a minimum of 30 hours a day to get done what "ought" to be done. Work is still piling up and nothing has been wrapped for Christmas. But that's okay. What will happen, will happen.
I remembered how sweet last year was, the last time we get to have all our kids home for Christmas for many years. And precious Mary helping Aaron open his presents. See, with his challenges, we don't know how many more we get with him. And this last year has been pretty rough on his health. This is a picture that I will always, ALWAYS treasure. And now we get to share it with the world.
So sit back, and take three short minutes to let the Spirit of Christmas fill your heart. You might find yourself smiling a little bit more, too.
Christmasis not as much about opening our presents as opening our hearts. ~Janice Maeditere * It seems that not everyone's browser downloads the video. So here's a link that should take you directly to it.
Okay, so I almost always find time to write on Sunday. Not this last one. I was grumpy, cranky. I mentioned to a couple of different (pretty close) friends that I just couldn't write that way. They both told me that was a great time to write. That no one believes I ever get grumpy.
Um, I think I can hear a couple of my kids laughing about that one from several hundred miles away. Not to mention my siblings and my parents. I haven't even mentioned those conversations to the ones that live in this house. Not quite ready for the chortles and falling down in disbelief. Yep, I can do grumpy really well.
The back yard
See, I'm not real fond of winter. Not thrilled with snow. Downright dislike the cold. Yeah, I know I split my high school years between Alaska and New Jersey. Neither of those places is known for balmy winters. But this is the time of year I have to keep reminding myself that I willingly left California because we were just too cramped there. This is when I have to remember that all of us squished into a home smaller than my basement would be a bit tight. And winter, while a bit later in coming, has shown up with a vengeance.
Part of our driveway.
See, I actually am okay with snow, if I can sit inside watching it, while reading a novel and drinking hot chocolate. But that's not in the cards for this girl's life. We have a big driveway, five (as of today, four, one broke) snow shovels, and a child that needs to have safe passage in a wheelchair. So guess what I found myself doing Sunday morning. And to top it off, it had been COLD! Like, the kids will count down the temperature on the car as it goes from the garage (23 degrees) to the school (4 for the early morning high school run, only 2 by the time the junior high kids went). And it's stayed cold, All. Week. Looooooong.
Add to that, I had to drop out of our Christmas choir. See, they ask that you don't miss more than two
rehearsals, three is the very outside. I missed my first when I went to help my mother-in-law following her surgery. No biggie. I wouldn't be missing any others. Then I got sick, over a Sunday of course. Then Aaron spent two more up at the hospital. I probably could have pushed it, and they would have let me in. But I didn't feel comfortable missing so much rehearsal and being confident in my parts. So yeah, grumpiness abounded.
But a friend has inspired me to do some "work" in my own head, to look inside, to find the joy in the moment. To see that all things work for our good. And it has been work. I've had to look hard and actually physically do things to help me get out of my slump. Sometimes things I had no desire to do, in the beginning at least.
The kids saw Santa at the church Christmas party on Saturday. It was nice, but I wasn't thinking too much about it. Michael tried to ask Santa for an iPod. Yeah, like that's going to happen. Bless him, Santa told him he'd have to have a talk with Mom and Dad before he could promise that one.
Not sure what Andrew asked for, but Santa had fun tickling him.
But when I handed Aaron over, Santa was very still. He looked at me with the warmest smile, and then at Aaron. And said, "Aaron, it is such a privilege to hold you." And he even made a point to tell me later how grateful he was that I had let him do this. Wow, really touched me.
We put up the Christmas decorations (late, I'm sure that helped play into my nasty mood). The stockings are hung, and two aren't up. That tugged at my heartstrings a little bit.
But all the bears are out, every one accounted for. And yeah, they're kinda jumbled up, with the Nativity scene having been played with. But that's pretty much par for our lives, so that's okay.
The poinsettias aren't quite as nice as when Mary and Jonathan have done them in the past, but they still look pretty good. And Aaron's angel tree is decorated, with a butterfly on top for his angel friends.
Tonight, Andrew and Michael and I made candy sleds for a "store" project that the 5th grade does. I'm afraid I haven't been a very good mom about this in the past. Andrew's the 5th child we've had do this. I think the other kids were pretty much on their own. One of them sold "desk clean-out services." Yeah, I guess the 5th graders had similar feelings about their desks that my kids do about their rooms. It didn't sell so well.
And I didn't much feel like doing the project tonight. But it was important to Andrew, and once I got into it, it was actually a lot of fun! And they even turned out really cute! The "work" is working.
Then I went to do Aaron's cares. I have no idea what was so funny, but this kid was busting up. And any doctor out there who thinks these kids are vegetables? Well, let me just invite you over to help with those cares! If he's a vegetable, it's some kind of crazy Mexican jumping bean!!
And I'm starting to find it again, the peace and comfort I know is there. It's not all rosy. There are still going to be issues, challenges. And I'm going to have to work on that, hard, probably every single day.
Like I said, I don't do winter well. The dark and cold have a way of making me feel dark and cold. But spring will come. And in the meantime, I have a warm home, a wonderful family, and even cars that warm up (eventually). And I'm not the only one out there wielding the snow shovel. So we'll make it work. After all, isn't that what life is about?
I may not be there yet, but I'm closer than I was yesterday.
We're home, and apparently just in time. There's a big snowstorm blowing in tonight (which will make Aaron's asthma oh so fun) and about a million things going on here.
The next couple of weeks are full of medical-type appointments, but the funny part is, I don't think even one is for Aaron. Joseph had fillings today, Matthew has a dental check-up Friday, and Jonathan sees an oral surgeon on Monday to see if he needs his wisdom teeth out (or if they're even there!). Next week, Joseph has a follow-up from his tonsillectomy and Michael gets to go meet Aaron's plastic surgeon.
Yeah, that's a fun story. Seems that on Friday, he, Matthew, Joseph and Andrew were playing football in the backyard. Michael went to tackle Joseph, Joseph moved out of the way, but the rock wall stayed put. Michael vs rock wall. Rock wall won.
I got a call from William saying that he had a gash more than an inch long and very deep on his cheek and assorted other abrasions. They came up to Primary's for the stitches. Plastics was in surgery when they got here, so all in all, it was about five hours before he was sewn up. And while the edges came together well so it was bleeding badly when bandaged, when they took the bandage off, it flowed freely. Yeah, it was pretty bad.
Add in carpools for school and other activities, plus I haven't even started decorating for Christmas, well, I don't think there's much chance for boredom to set it.
Please, please, keep Aaron in your prayers. He's still not 100%. We're still going to be using his albuterol and he'll be on higher oxygen amounts for the next little while. I think I've had enough of our vacation home in the north.
Love the Christmas season. Even love the snow, when I can sit inside, read a book and drink hot chocolate. (Don't think that part will happen right away.)
There is nothing like staying at home for real comfort.
So yesterday we almost had our walking papers in hand when he started acting up. Little higher heart rate, higher oxygen needs, soggy face, you get the picture. So we decided to watch and wait a little bit longer. I had some things that needed to be taken care of at home, so I left for a little while.
Just before coming back, I called up and spoke to the nurse. Should not have done that. It jinxed us. Everything was going great! No issues at all. Happy and playful or sleeping peacefully the whole time.
I knew by looks on the faces when I got here that something changed. That plus the respiratory therapist was standing in the doorway taking off the cover gown and gloves (used to keep his germs from traveling with her to other patients' rooms). And it was exactly halfway between his treatment times.
He'd had a big mucus plug in his lungs, dropped his sats, and ended up on ten liters of oxygen. Yes, again. He was coming down when I got here. It was either six or eight by that time and he was doing well, but yeah, it kinda put a crimp in things.
Then he did it again this morning at 7:00. Plus he's got some really thick, copious, nasty snot in his nose. But in between these episodes, he does pretty good. Like one to three liters, happy, smiley good.
So the big question is: is this the last hurrah for his cold, just going out with a party? Has it turned bacterial (that one's got my vote, antibiotics and we're good to go, right?)? Or has he picked up something new all together? All are distinct possibilities. And he's not telling which one it is.
Not sure where we go from here. If he doesn't do it again, I may take him and run tomorrow. If it crops up again, I think we'll look at repeating labs and tests. And we'll keep on plugging on.
Fall seven times, stand up eight. ~Japanese Proverb
Just a quick update here. Aaron looked really good for most of yesterday. We had a few bumps, but nothing too terrible. He had a rougher patch during the night, but that also may be a bit of my own perspective.
He had been alarming, although not with the greatest wave form (way to tell if it's "real" or not) for quite a while. His nurse wasn't checking on him, just hitting the "silence" button out at the desk. I finally told her, very directly, that she had a responsibility to actually check him. Yeah, I wasn't real impressed, but I'm sure sleep deprivation played into it.
Anyway, this morning, his heart rate has climbed a bit, and his face is kinda "soggy." We've pulled out some thicker yellow gunk from his trach, too.
So rather than take him home and risk turning around and coming back in a couple of days, we're going to watch him for another 24 hours or so. Lots of fun.
Please keep us in your prayers.
Fortune knocks but once, but misfortune has much more patience.
This is the view I woke to this morning, the sun touching the tops of the mountains across the valley from us. The view inside was even more beautiful!
Somewhere in the night, someone (probably Aaron) found that magic switch and flipped it. He was on one liter of oxygen.
I know we've been down this path before. And obviously, he's found his way back each time. But towards the end, when there's days in a row where it seems that no progress is being made, it can become discouraging. You begin to wonder, how long will it take? Where is it going? Will there be changes we really don't like? And by the way, I stopped praying for patience a long time ago! See, I've noticed that when I do, the Lord gives me opportunities for patience, not necessarily the patience itself. He seems to think that's a muscle I need to exercise a bit more.
I don't know what changed things. Nobody does. But like in times past, something finally clicks, his heart vessels and lungs open up, and he does so much better.
We did have a bump this morning where he needed six liters, but only for about 30-45 minutes. He may have another (coming up now, actually). But that's okay. Those can be dismissed as long as they don't go longer than an hour. And while he may not be quite ready to go home tomorrow, if we don't, it won't be long after that.
In fact, you can see for yourself how he's doing. Here he is. I apologise for the lighting. He wasn't interested in turning the other direction.
Right now, this very minute, what he needs is a nap, a good long one. He's been up since about 8 p.m. last night. Yep, my little night owl. Love him so much.
You can only come to the morning through the shadows.
Boy, this year's Thanksgiving is a far cry from last years, or any that I've known. But different is okay. Different can be good.
Last year, I knew it was the last time for a long, long time that we would have all our children under our roof for the holiday season. I've had friends who thought that it was so sad. Not me. I've gotten to know many people over the past three years (and if you stop and think you know some, too) who had "lasts," birthdays, holidays, whatever, and had NO CLUE that it was the last. Knowing made it easier to keep things in perspective, to focus on the important things, family, fun, spending time together.
Sunday morning, I woke at 2:30 a.m. to the Code alarm on the unit. I sat there and prayed. There were only five patients on the floor, and one was in trouble. I tried and tried to hear the sounds that come creeping back when it resolves successfully. I tried to rationalize that with it being the middle of the night, and so few patients, that maybe I just missed them. But that wasn't the case. I found out Sunday afternoon that it was a friend's baby. Her beautiful, perfect soul escaped from her tattered body and went Home, leaving a huge gap in her family. I ache, I ache so badly for them.
So today, we're still at the hospital. But that can be good, too. See, we still have Aaron. And my priorities have been socked right back to where they should be. Saturday evening, I was impatient, wanting Aaron to hurry up and get better so we could be home, slightly irritated that my schedule was being interrupted. There was so much to do!
Sunday, I remembered that this is what I need to be doing. And yeah, it's taking time to get him back to where he'll be safe at home. But that's okay. It's the look on his face during a rough IV poke, when he sees me that reminds me I'm choosing the best from the pile of good, better, best. It's the change in his eyes when I take his hand from "I just can't do this, it's too much" to "There you are, Mom, okay, if you're there, it will be okay." I remember, oh too vividly, standing over his cradle three years ago, sobbing that I just wanted one Christmas, please, just one. He wasn't doing well. In fact, less than 24 hours later, they Lifeflighted him from our home. And we got our Christmas, and two more have gone by since, and yet another approaches. We are so, so blessed.
Happy Thanksgiving, everyone!
This year, Mary and David are serving the Lord, teaching people about His goodness and sharing the gospel. William and the rest of the kids will have Thanksgiving breakfast with his mom. Then they'll come to the hospital for a traditional dinner here. The good people here provide a traditional dinner for the immediate families of those patients who are here. Then they'll go home and have a "Charlie Brown Thanksgiving" tonight. And frankly, if giving thanks is what it's all about, my guess is they will be very thankful for that. I mean, they're kids. Toast, pretzel sticks, jelly beans, and ice cream sundaes on regular dishes are more up their alley than china and crystal goblets. It sounds like a winner of a day all the way around.
George Washington declared Thanksgiving Day as "a day of public thanksgiving and prayer to be observed by acknowledging with grateful hearts the many and signal favours of Almighty God." He didn't say anything about turkey or sweet potato casserole or pumpkin pie. It was a day for remembering blessings. And blessed we are.
We can only be said to be alive in those moments when our hearts are conscious of our treasures.
Well, we did it! He made the jump to his home vent and even made it to the floor. But the floor part was a bit dicey, and still is a tiny bit.
When I woke up this morning, a resident who doesn't know us well (yet) asked if I wanted the floor or home 'cause he was only on 5 liters. That would have been great to go home, except our parameters are three liters or less for 24 hours. And those are in place precisely because of what's happening now.
By 10:00 a.m. when she came to say we had a bed assigned on the floor, he was awake and needing 12 liters. Yeah, our home concentrator doesn't even GO to 12 liters. By 11:30, his assigned time for transfer, he had managed to get back down to 8-9 liters, so we came on up.
Since then, he's sat between 9 and 12 pretty consistently. At this very moment, he's using 15 liters, the maximum for the hospital meter. I'm sticking pretty close to his room and it won't surprise me at all if we end up having to bag him out of a pulmonary hypertensive crisis. (In other words, he's going to need some significant intervention to open up his lungs and keep the blood flow processing correctly.) But as long as it works fairly quickly when we do AND it lasts when we put him back on the vent, we should be able to stay on the floor.
And once he goes to sleep, we should be able to turn his oxygen down and give ourselves more wiggle room. So here we go. Pulmonary hypertension has reared his ugly head again, right on schedule. Yuck.
It's not easy taking my problems one at a time when they refuse to get in line.
~Ashleigh Brilliant
This is the vent that he's been on in the PICU. The superpower, got a brain, think for itself ventilator. (Yeah, there might be a bit of vent envy here.) But look at what it says! STANDBY, baby!!
Yep, he's (hopefully??) making the jump back to his vent. This morning we turned down the settings on this beast to his home settings. He wasn't quite sure which way to go with that. And after a little while, one of the docs asked if it was going great. I told him we still weren't sure. I figured that one of two things would happen in the next few hours. Either he would get it together and pull it off, or he would get tired, say, sorry guys, and need to go back up.
And it did take about another five hours before it looked good for long enough that we were all comfortable with things.
So here we go again. He's doing what he did this morning when we made changes. His heart rate is a bit higher, he's really tired. He's needing a TON of oxygen. And now we wait to see what he does. But I kinda think he's going to do it. If he can stabilize, we'll go to the floor tomorrow.
Right now, he's resting, sleeping peacfully, which is the best thing for him when he's trying to work hard to adjust. Besides, he stayed up all night last night, playing hard. Let me tell you, this super-vent, the ICU vent, doesn't have a clue what to do with a kid who blows raspberries. It's used to holding still, sedated, intubated patients. We just laughed.
He still has a ways to go before he can go home. He's on almost nine liters of oxygen and he has to get to three for at least 24 hours. But he'll get it. So sleep tight, baby boy. Love you.
A good laugh and a long sleep are the best cures in the doctor's book.
Sometimes I think we just stumble into our roles. I mean, yeah, you've got nine months to "prepare" (whatever that means) to become a mom, but then what? I guess some have a pretty good idea of what "kind of mom" they want to be. Me, I've pretty much been a fly-by-the-seat-of-my-pants kind of person.
I mean, the biggest reason my kids didn't go to preschool was that it would add in another schedule we had to keep. I did worry a little about that, especially since writing their own names was about what they could do when they started kindergarten, as opposed to the kids who were reading already. But you know what? I think they've done okay anyway.
I stumbled into the soccer mom thing, totally by accident. And that ruled my life long before I realized that it did. I mean, in the beginning, it was a cute activity for the girls, about their only one outside of school. It was a 45 minute practice once a week for a few weeks and then a 50 minute game once a week. Easy peasy. I didn't look far enough into the future to see the three two-hour practices plus two games a week scene, multiplied by multiple kids.
And then this last fall, I had another "ah-hah" moment. Someone asked if I was a "heart mom." Nope, I'm a Trisomy mom, trach mom, vent mom, . . . um, because of his heart. Uh, yeah, actually, I guess I am. 'Cause while trisomy can (and does!) cause a host of challenges, Aaron's heart is actually probably his biggest single challenge. So yep, I'm a heart mom. And knowing some of these other ladies, I can say I'm grateful to be part of them. They're a pretty incredible bunch.
But those labels, what do they really mean? Soccer mom, dance mom, baseball mom. Trisomy mom, heart mom, vent mom, special needs mom. I think the most important word in there is the one they all have in common: MOM. Yeah, those three little letters, M-O-M.
Those letters say so much. They say, "I'll love you forever." "You are my reason for living." "I'll always try to do the very best for you, even if, sometimes especially if, you don't like it." And I think that is what a mom is.
It's staying up Waaaaaaaaay later than you really wanted to helping with a homework project. It's getting up and driving to school much earlier than you'd like, in the freezing cold, because they want to take a zero period class. It's trips to the ER with a broken arm or a towel held on a bloody forehead when you'd rather be making dinner. It's listening to the frustrations or the excitement of what happened at school. It's laughing with them and crying with them, and sometimes even yelling, too.
It's learning a new language, holding your baby while they try again and again to get IV access into tiny veins that don't want to cooperate. It's pushing your fear aside and learning how to keep them breathing, learning what you can handle and when you need back-up, and waiting to fall apart until after the crisis has passed. It's comforting and reassuring your other kids and family members that, even though this is hard, you know them, and they can do hard things. Letting them know that it hurts, and it's okay that it hurts, and it's okay that they hurt, but together, you'll get through it all, somehow.
See, I often have moms say to me, "oh, you're so amazing, I could never do what you do." But they could, and they would, if they had to. 'Cause that's what a mom does. That's who she is. She's a Mom.
************************
Aaron update: He's improving, just very, very slowly. Yesterday we took his PEEP from 13 to 12, and today we're trying 12 to 11. He needs to get to 10 on the hospital vent and be stable there in order to try to get back to his home vent. But so far, it seems to be fairly steady progress. He's been asleep all morning, so we'll see how he does when he wakes up. If he wakes up and does well for a few hours, then we'll drop again. But as always, it's all in his court.
"Motherhood is near to divinity. It is the highest, holiest service to be assumed by
mankind. It places her who honors its holy calling and service next to the
angels."
First Presidency of The Church of Jesus Christ of Latter-day Saints.
You know when you get sick and you take medication and think maybe you're not so sick after all? And then it wears off and you realize, yeah, you really are? Yeah, I think that's what's happening here. Except instead of being able to take a decongestant (which would cause really bad things for him) we increased his ventilator support. And he looked pretty darn good!
So the next step was to decrease the support back to his home settings, since he was soooo stable (and he really was!). Right off, we started seeing a slightly higher heart rate, and then a little more on top of that. Then more secretions, higher oxygen needs, and so on. Can you see where this is going?
We thought too far ahead. About 4:00 p.m., they decreased his vent settings (still on the hospital vent) and wrote orders to try his home vent at 8:00 p.m. Yeah, but at 8:00 p.m. he was on a lot more oxygen, heart rate climing into the 150's (low 110's would have been normal) and he was running a fever again. Oh, and don't forget all the junk we were pulling out of him. He was pretty miserable.
I think it was about 10:00 p.m. that we gave up and increased his PEEP again. And again at 4:00 a.m., so now it's at 13, which won't mean much to many people, but it's a lot of support. However, that support is what is keeping his lungs wide open so he can move the oxygen through. So think of it as your really classy drugs for that lousy cold that otherwise would have you moaning in bed.
And he kinda likes it. Right now, he's asleep, and his heart rate is 99. He's not working hard at all. And earlier this morning, he was blowing raspberries. Let me tell you, the vent didn't know what to make of that one. We just laughed.
So now we're watching and waiting. When the team rounded this morning, the consensus was that we had pushed too hard too soon. He does have a cold, rhinovirus. And it's going to have to run it's course, darn it. But at least we can keep him comfortable while it does.
I've got thoughts running around in circles inside my brain right now, trying to sort themselves out. Thoughts on the different roles we take on, the different hats we all wear. I'm hoping that by tomorrow they make a little more sense. You've been warned...
“I’m here. I love you.
I don’t care if you need to stay up crying all night long,
I will stay with you.
There’s nothing you can ever do to lose my love.
I will protect you until you die,
and after your death I will still protect you.” ― Elizabeth Gilbert
Cute art project that Child Life did for him.
The turkey body is his footprint. Love my
kiddo's chubby foot!
It's funny how time is so fluid. It crawls at a snail's pace and then races along. So please forgive me if I'm not too exact on how things happened yesterday. It was a bit crazy.
All afternoon, he kept creeping up in his oxygen needs. I mentioned that the Trach Ninja had been in and not impressed. I think that was about 3:30 or so. About 4:00, he looked worse still. Just before 5:00, he dropped again. I was standing bedside and his nurse asked if I wanted to bag him. No, she wasn't asking if I wanted to bag him versus her bagging him, but if I thought he needed it. But guess what, I'm pretty darn good at bagging him. So I asked her to hand it to me and plug it into the oxygen.
And it started. She also called respiratory in, telling them what we were doing. So we bagged, and tried the vent, and bagged again. Also involved were phone calls to the PICU, and yeah, the attending had been "attending" a whole lot more the whole afternoon. In fact, he stepped away because he had a care conference for one of Aaron's little friends, but was in and out of that to come check on us. (Funny part was, even though nothing was said because of HIPPA, her mom and I each knew who the "other" patient was that he was so involved with.)
PICU wanted to increase some vent settings to see if it helped. Nope, not happening. All in all, he was probably being bagged for close to an hour or more, and yep, he landed in the PICU. We got down here right about 6:00 p.m. They put him on the hospital vent which lets us give him much more oxygen and he settled right down.
He's been peaceful ever since. Well, except when we suction out his nose. Don't get that one. Doesn't every three year old love to have their boogers sucked out?
The PICU has increased some of his ventilator settings to open his lungs and let us use a little less oxygen. If you look back to his September fun, he really, really struggled the first few days. Like needing 100% oxygen and having a hard time keeping 80% in his blood. (We usually sit in the mid-high 90% without any extra oxygen.) I came back from dinner last night and he was only using 60% to stay above 90%.
Right now, he's down much, much lower. I think the next step is to reduce his ventilator settings back to his home settings. His labs have all come back now, and the only thing that showed up was rhinovirus. His white blood count, which measures how hard the body is fighting against illness, was very low. So we're not worried about a bacterial component (and hoping one doesn't show up later).
It's just support that he needs. While his vital signs are so much better (and yep, "vital" means exactly that, absolutely necessary, essential to life) he's still pretty sick. His fever seems to be gone. He still been a bit warm a few times, up to 38.3 (100.9) a couple of times today, but it's resolved on it's own without medication. He's also still really, really goopy, with tons of stuff coming out of his nose and his trach. And he's not playing or smiling a whole lot yet either. Yep, sick.
However, it's almost 1:00 p.m. and they still haven't rounded on him. I like being low priority in the PICU. He's been high priority before, he's been very unstable. I've seen three attendings at his bedside at 2:00 a.m. before. Yeah, I like where we're sitting now much better.
“I took a deep breath and listened to the old brag of my heart.
Aaron was doing great, really great, right up until
Wednesday morning. As he left for
school, he sneezed out a huge green booger (TMI?). His nurse said that all day they were mopping
up yellow and green junk from his nose, but nothing from the trach. Wednesday evening, I started pulling it out
of his trach.
By Wednesday night, he was running a fever, and much junkier. He was still okay on his oxygen, but I
started albuterol anyway, hoping to head off things. Didn’t happen. He did Okay
through most of the night, but by 4:45 a.m. he was struggling quite a bit.
We had a new nurse last night and I guess he figured he had
to break her in. He was in the mid to
high 70’s with his oxygen and really retracting and junky and frankly, a mess. She had been suctioning several times an hour
most of the night.
So we gave Tylenol, got the bag mask out, and started bagging
him. Once he came up a bit, we switched
back to give him albuterol through the ventilator. When that was finished, we went back to
bagging for several minutes. Since he
was able to be somewhat stable, it was time to watch and see if things improved
with the albuterol. Um, not really. We watched for about 45 minutes to an hour,
plenty of time for things to kick in. He
wasn't budging on his nine liters of O2.
So it was time to throw in the towel and call for backup.
But hey, we let Lone Peak Fire sleep through the night! And I almost did. When we got here, he popped another fever,
38.something (I can’t remember) even though he’d had Tylenol only three hours
earlier.
We’re pulling all sorts of
nasty, thick, sticky junk out of his lungs.
His x-ray looked good and they’ve pulled a bunch of labs. The only thing
positive at this point is his viral panel.
Good ol’ Rhino, his nemesis.
Right now, he’s kind of on a bubble. If it pops (and it’s looking a wee bit fragile) he’ll go downstairs to
PICU. His fever is back, up to 39.7,
even with Tylenol. We’ve given Motrin
again, rechecked the gasses in his blood to makes sure he’s oxygenating well
enough. They’ll repeat it in a couple
hours and we’ll go from there. But I’m
afraid it’s a bit telling that the Trach Ninja was in and was not happy with
how things were going.
So for now, I’m not getting too comfy and settled in the
room. It would be great if we can stay
here and not need the extra support downstairs.
And so much for getting the ramp built this weekend. I do love power tools.
For now, please say some extra prayers for our bug. He’s hanging out on ten liters of oxygen and
satting in the high 80’s. This bug is
kicking his tail.
To array a man's will against his sickness is the supreme art of medicine.
I'm not sure where this is going, so either bear with me, or click away. But once again, I've got a jumble of thoughts floating round and round. Perhaps I ought to find time to write more than once a week. Maybe then I wouldn't get so confused. It's been a busy week, a good one, but busy.
On Monday, we got to go to a wonderful Veteran's Day program at the grade school. As part of it, they had all the veterans present stand and introduce themselves, and then they sang the fight songs for the various branches. That, along with the pledge, the National Anthem, and some other presentations guaranteed that I was teary-eyed through most of it. As we left, I overheard an older vet say to the woman with him, "With kids like that, I don't worry about the future of this nation." Yeah, it was that good. If you want a taste of it, here's a slideshow that they sang "Thank you, Military" during. Even downloading it, I was in tears. Blame my own military upbringing. Air Force brat, all the way.
Tuesday was Joseph's surgery. He's been a real trooper, but still suffering quite a bit. We had to go back in last night to the ER because he had some bleeding (the tonsils are located right by four different arteries). Fortunately, while we could see the source, it had stopped by the time we got there, so they just watched him for a while.
Wednesday was Aaron's "all-you-can-eat" doctor's appointment where we see Special Needs, Social Work, ENT, pulmonology and respiratory. Everyone was sooo impressed with how good he looked. Now the goal is to not go back there until our next one in about six months or so. Gotta love goals, right?
But here's what's been on my mind, the need for support, for contact with other families. It's something I've been thinking of since a leader of one of my support groups asked if the weekly lunches they hold for families who are inpatient were helpful. The responses? Most definitely a resounding YES!
See, here's the thing, when you become pregnant, whether it was "planned" or a "surprise," you have certain expectations. Birth about nine months later, walking somewhere between 9-14 months, babbling, kindergarten, maybe dance or soccer practice, high school, driver's license, prom, graduation, maybe college, and so on.
NOBODY plans of NICU, PICU, becoming so familiar with life-saving measures that you can almost do them in your sleep. Nobody expects to plan their child's funeral, or to have to figure out how to teach a child how to roll over.
My sister has an extensive background in special ed and special needs. In my anguish and fear (and yeah, fear was a very big part of it) I once told her that this baby I was carrying was supposed to be hers, not mine, because I didn't know ANYTHING about special needs. Bless her heart, I don't know if it was her natural compassion or her psych training kicking in, but she just listened. She probably should have reached through the phone and slapped me. She had her own challenges that I well knew.
So when you do get that diagnosis, even if it's an "unknown, just something is wrong" diagnosis, it's paralyzing, isolating, lonely. All of a sudden, it seems that everywhere you go, everywhere you look, there are happy pregnant women, cute active toddlers, poised accomplished teens, and while you love your child with every fiber in your body, that's just not you anymore.
Instead, you come to be on a first-name basis with your local paramedics, and they don't even consult a map when they hear your address. You learn to live with tubes and wires and alarms, and welcome into your home and your family strangers who will keep your child alive while you catch a few hours of sleep. You learn a whole new language, one that you must know in order to be able to communicate effectively and exactly with the medical world. Because knowing it is crucial for your child's life.
Last Tuesday, during Joseph's surgery, I slipped into the lunch that was being held. We laughed and we commiserated. There was a wide variety of challenges being faced there, but this particular group caters to families whose children have life-threatening illness, and it bonds us.
During lunch, a strident alarm blared out. All conversation ceased as we looked at the speaker. Then the words, "Code Red" followed by some place came out, and we all breathed again. Some didn't even know what a "Code Red" was (it's a fire). We went back to laughing and talking. Because it was just a fire in the hospital, no biggie, right? But it wasn't a Code Blue. Because we knew, everyone of us knew, what a Code Blue was. And some have
had it called on their children. It was as if breath and hearts stopped
in our little room while we waited those few seconds to hear. And once
again, we were all one. One in our hopes and our fears.
As special needs parents, we do laugh and talk. We have to. And we joke about alarms and hospital visits and long stays. We tease about who wants the extra attention from the PICU staff and who is content to stay on the floor. Sometimes, in our Trisomy family, we joke about forming a physical community. We would have roads like Hug Boulevard and Angel Way and Warrior Path. Because we need these connections. We need to feel a part of things. We need to know we're not alone, and we're not. And that is what's so special about a special needs family. We are not alone, and we will reach out in love and faith and prayer, and let each other know that they are not alone. We have each other.
"Stellar spirits
are often housed in imperfect bodies. The gift of such a body can actually
strengthen a family as parents and siblings willingly build their lives around
that child born with special needs."
Friday, a typhoon hit the Philippines. I have my own memories of being in one when we lived there. We weren't in danger, but let's just say as a four year old and afraid of the dark, I was plenty scared.
Today though, there are moms and dads who put my fear in a different light. There are still several missionaries unaccounted for, and I can not imagine the aching feeling of not knowing where my son or daughter was, or how they were doing. I can not imagine the exhaustion that comes from that kind of worry. For me, it's the unknown, the lack of ability to do anything to help that's the worst. The very, very worst time for me in Aaron's journey was the time when he was in the NICU and I couldn't be there all the time with him. That was worse than heart failure, pneumonia, and the major issues we've seen this summer. Not knowing, not helping, not being there. And that's where these moms and dads who have sent their children out to help others are currently sitting. Please, please pray for them, for their children, and for all the others who are suffering over there.
Aaron is doing well here. He's back to his old tricks: staying up until 4 a.m. (last night), sleeping through school most of the week. On Friday, he was making some really weird breathing sounds. And they were loud enough that I could hear them in the next room. Generally, that's not a good thing. I went to investigate and found him blowing raspberries! Yep, he was thinking it was pretty funny. Last night, he was laughing around his trach. We haven't had this for so, so long.
I remember a conversation with Dr. G. when we were getting ready to bring him home from the NICU. I was still trying to get a feel for how long we might possibly have, and how to tell when it was drawing to an end. He told me that he had seen many do well for a while, six, 12, 18 months, and then their bodies would just be fighting too hard. I asked him if I would see it coming. He assured me that yes, I would know, I would see it happening. It was more rare for it to be sudden in a case like that.
And that's what I've replayed over and over as our hospitalizations have gotten more frequent, longer, and with fewer options. That's the conversation I heard again in my mind when cardiology started talking about needing to have a new, higher oxygen flow baseline for discharge from the hospital. That is why I have been so thrilled with the idea that his asthma is contributing more than we thought it was.
He still struggles to lie flat for long periods of time, but we all breathe better when our heads are up a bit. And we've used his albuterol a couple of times since discharge. But his demeanor, his energy level, and even (or especially) the noises he makes now that he's got more energy all point to very good times ahead.
One last note, Joseph's tonsillectomy has been moved to this Tuesday. He's pretty nervous about dealing with the pain afterwards. Can you please keep him in your prayers as well?
You are not alone on this journey. Your Heavenly Father knows you. Even when no one else hears you, He hears you. Dieter F. Uchtdorf
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November 4th - I'm grateful for Michael's enthusiasm. He is so excited about just about everything. He brings a freshness, a newness to simple joys.
A quote a day from 2013 conferences with space to jot a thought or two.
November 5th - I'm grateful for helpers in the insurance world that will work hard to figure out how to get Aaron the care he needs. The hospital dentist isn't listed as a provider for our insurance, but the representative took my name and number, GAVE me HER name and number and promised to figure out something. Then called back bright and early the next day to say it was all fixed.
November 6th - I'm grateful for home computers and the internet that let
me put together meaningful, lasting gifts for my children.
November 7th - I'm grateful for Matthew and Jonathan, and for their quirky sense of humor. These boys make me laugh. It's so fun to have "almost adults" around.
November 8th - I'm grateful for my kids' overall good health. When I went to fill out pre-proceedure paperwork for Joseph's surgery, I was dreading it. Aaron's takes a good 45-60 minutes. Joseph's was simple, less than three minutes, start to finish.
November 9th - I'm grateful for our special needs community. In happiness or sorrow, we "get" it. And it was so much fun to take "hero" pictures yesterday for a fundraising calendar. Michael was my hero yesterday as he worked hard to help Aaron in his pictures. Both dressed up, and Michael played a star role as a supporting (literally!) actor.
November 10th - I'm grateful for the gospel, for the peace and understanding it brings. There are simply not words to express. I would not be me, I could not do the things I do, without it.
