This Week, Plus a Favor

Aaron's doing well, although he's a little higher on his oxygen and has been retaining a little more fluid than usual. We'll have to see if he makes it to church tomorrow. It will depend on how he does tonight. Maybe his bath will help to start moving the gunk in his lungs. It's been a little while since I did a real update, and we have some news.

First of all, last Saturday, some of the kids and I went to see Rio. While that was fun, it wasn't the highlight. We also got to meet a family that lives in the area who has a 5 month old baby girl with full T18. Mom and Alayna weren't there because Alayna had been sick the night before, but we got to meet dad and her 3 older sisters and older brother. It was really neat to connect with them. I'll put up some pictures we took of everyone together in the next few days. Aaron essentially slept through the movie, which was nice because then I got to enjoy it too.

Second, we finally got approval for Aaron's circumcision. He needs to have it done because little boys with circs have slightly fewer urinary tract infections than little boys without. A UTI isn't good in and of itself, but he also has a grade IV urinary reflux (grade V is the worst) which means that instead of going straight down the urethra and out of the body, the urine also refluxes back up the ureters and into his kidneys. This means that any UTI can also easily cause a kidney infection too. So the doctor applied for approval, I think in January. It was denied so I sent in an appeal and the doctor also appealed with more information. Again, denied. So I asked for a hearing. On Tuesday, we were supposed to have a pre-hearing conference over the phone with insurance, me, and the doctor. Two hours before the hearing, I got a call saying that the insurance doctors had gone over the file prior to the call and decided to approve it. Yea for actually reading documents before automatically denying something. Imagine that, they decided it WAS medically necessary. Plus, since it will be done in conjunction with his lip repair, ear check, hearing check and bronchoscopy, it will only be a tiny fraction of the bill, less than it would be for a 24 hour inpatient stay. If he ended up with a kidney infection, it would be much longer than that.

Finally, I have a favor to ask. There is a baby girl in Gilbert, Arizona being born on Friday. She also has full T18. I've been in contact with her mom several times over the past few months and remember only too well the fear and pain of those last few days before Aaron's birth. I'm sure they will be fasting for little Sophie and her mom, but I'm hoping that anyone who knows Aaron and is fasting might include this sweet family too. They would so much like her to have the chance to live with them here on earth for as long as possible. While the gospel plan is wonderful, and the knowledge that they are ours forever is priceless, it is still an almost unbearable agony to contemplate losing your baby. So if you can, please join your faith and prayers with this family. I know they will appreciate it.

I Hate Rollercoasters

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...

Easter Thoughts

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.

What is the Answer? Are There Answers?

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. 

Ten Months Old!!

Aaron is 10 months old today! Ten more months than we thought we would get.

I got Superman cupcakes for his birthday today, because he's our
superhero. I love the look on his face when he saw his treat.

We let him have a taste of the frosting, and I think he gets a lot more out of it than we do.  Because he has never really figured out how to swallow, he rolls it around in his mouth for quite a while before it goes anywhere, usually out.  

We are so grateful for him and his wonderful spirit. He
has taught us so much. On this blog I put the words to little purple
pansies. I think it suits him. They are so tiny and appear so
fragile, but are really strong, sturdy flowers, just like him. While his body may be medically fragile, his spirit is as strong as any I've been privileged to know.  Love our little bug.

Comedy of Errors

I feel like this week has been a comedy of errors, except I'm not laughing yet. When we went in on Tuesday, it turned out that Aaron had outgrown his pulmonary hypertensive dosage and was shunting because of increased pressures. We adjusted, watched and came home on Thursday. If we'd thought earlier about how he's gone from 4.9 kg at his last dose adjustment to 5.7 kg, we would have realized earlier that he needed more.

Then Friday morning we went back in quickly because of significant increases of oxygen with desats. Turns out that was related to a problem with our concentrator, not Aaron. While the concentrator was reading 6-8 or even 10 l/min, he was only getting a tiny fraction of that. And I would have realized where the problem was if I had taken a minute to put him on a tank before calling 911. Oh well, live and learn. But we're home again. And he's doing great. And maybe someday, I'll laugh about it. After I get some sleep.

Feeling Like a Fool, But a Grateful One

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.

Prayers Needed

Hanging out, looking good, in the ED

We just got home yesterday afternoon. Aaron did pretty well during the evening, 1-2 desats with some plugging, nothing abnormal. When we went to bed he was at upper end of baseline oxygen at about 3 l/m. I got up to find 6 l/m (The nurse didn't get me up???) and was told he spent the night between 4-8, once @ 10!! I watched for about 10 min & that was enough when he went to 8 l/m, so I called EMS. They came in and he continued to drop, once he was way down, although I'm not sure how far because his wave pattern on his monitor was almost non-existent. At that point we took him off he ventilator and started bagging him with 100% oxygen. Now we're in the ED & he's looking really good on his baseline oxygen, but white blood count is really high. X-ray, blood gas are fairly okay. Because we don't live around the corner, and he's so complex, they're going to keep him for observation.

I half think his concentrator was malfunctioning even though it appears to be working normally (no alarms etc). I called our home equipment company for a new one to be delivered. But this back & forth is killing me & I'm starting to wonder if he may be declining. When he's good, he looks great, but our admits are getting closer & more frequent. Any ideas? Please pray for us, all of us.

Updates and Thoughts from This Week

Well, his echo showed no change from January.  Meaning no improvement, but more importantly, no deterioration.  X-rays and labs were also good.  The thought was perhaps, he was outgrowing his sildenafil.  So we watched last night.  He came down a bit on his oxygen, but not to baseline.  He had two significant desats during the night, but slept for most of it.  This morning, he was awake from 7 to 11 and had at least six significant desats.  Then he fell asleep and did much better, but still with more oxygen needs than normal.   By noon, his doctor consulted with cardiology who agreed that he had probably grown enough that he needed more sildenafil, so they increased his dosage.  His last dosage was calculated in January based on a weight of 4.9 kg.  Yesterday he weighed 5.7 kg, a significant increase.  He got his new dose at 2 pm and it has been smooth sailing ever since.  We’ve had a couple of very small desats, but he’s come back up quickly without any increase in oxygen.  We’ve also come down quite a bit on his usage.  It looks like this was the problem and we’ll be home tomorrow. 

Rainbow Kids is a pallative team here that is available for families with "adverse diagnosis." (Wonderful term, huh?) Anyway, he's wowed them as much as the rest of the hospital staff. Aaron usually has a nerf football that hangs from the beads across his bed, but this time it got left at home. So this afternoon, they brought him another one. He's been happily playing with it for quite some time. This little guy has so much love in him that he just can't help reaching out and touching others. I'm so grateful he decided to come to our home.

 

When Aaron was two months old, we met with Dr. John Carey, a renowned medical geneticist who has a special interest in Trisomy 18 & 13.  He told us that if Aaron lived very long, there would come a point where we would stop waiting for death and start planning for life.  I thought for sure I would recognize when I crossed that line.  I knew I hadn’t then.  When the hospital made that appointment for us, I let them because it was easier than trying to explain why I didn’t want it.  I just really hoped that someone would be kind enough to call, or that there was a system in place to notify Dr. Carey when Aaron died.  Because I really didn’t want to get a reminder call about an appointment for my dead baby.  Dead baby.  Who can even think of such a thing?  It’s not natural.  But somewhere I crossed that point.  I realized I had a few months later when I found myself wondering about the logistics of transportation to school for him.  And I realized that if I was worried about school buses and car seats/wheelchairs, I was planning on him living for a long time.

I sometimes feel like Janus with his two faces.  But his look to the future and the past.  Mine looks to the future, but also the immediate present.  I find myself trying to figure out logistics of taking him to a family reunion in Heber for a few days in June, and wondering if it’s possible to take him to Arizona to visit my family in a year or two.  And then he starts acting up like he did on Monday, and I wonder if I’m about to get a real Easter lesson to grow from as I experience Good Friday in my life.  The day when it feels like my whole world crashes down around me and all is dark and hopeless.  I know Sunday will come.  It will come with all the joy and promise of the resurrection.  But I will have to pass through the pain and anguish of a shattered Good Friday to reach that day.  There is no other way than to go through it and work towards the resurrection Sabbath.  And I don’t want to.  I want to put it off as long as I possibly can.  I’m not that strong.  I am not ready.  I don’t know if anyone can ever be ready for it. (ref  Elder Joseph B. Wirthlin “Sunday Will Come” Ensign, Nov 2006.)

What a Difference a Few Days Can Make

What a difference a few days can make.  Last week we had a lot of fun.  Wednesday we spent the day at Shriver’s Hospital for Children having Aaron’s hands, feet, & spine evaluated.  We made some cute splints that look a little like biker gloves to help stretch his hands out a bit more.  His spine looks okay for now and his foot needs some help.  He actually has the opposite of a club foot.  It’s called a calcaneovalgus.  A club foot bends in and down.  Aaron’s foot bends up and out.  But essentially the same idea.  We’ll come back in the summer to have it cast.  He’ll need new casts every week or two and I thought we’d just make a day of it each week.

Thursday, Aaron made it to the library for story time.  BIG SMILES.  He was so excited to be getting out with his brother. 

Friday was a gorgeous day and Andrew and Michael helped me take Aaron out on a walk around the block. 

Saturday was General Conference, or jammie church.   We brought Aaron in to watch with us.  Such a great experience to have him here.  One year ago, I was making his blanket and hoping and praying he would have a chance to use it.  Six months ago, we were inpatient with increased oxygen needs.  Looking back (you know, 20/20 hindsight) he was probably collapsing his airway but we didn’t know it yet.  This time, he got to be part of the experience with us.                                                                                               

Then Sunday, his heart rate increased a little bit.  Monday, it increased  more and so did his oxygen needs.  By last night, he was having more desats than normal and taking longer to recover.  It didn’t seem like it was related to plugging in his lungs.  Three more significant ones over the night, and I was wanting more input this morning.  I called our pediatrician and he called cardiology and now we’re back up at Primary’s.  They’ve pulled his blood gas and taken x-rays.  He’s actually looking okay on 3 liters now, but did have a brief desat about one hour ago.  I’m worried that his pulmonary pressures may be increasing.   When our pediatrician called cardiology this morning, they were talking about wanting a sedated echo.  So now we’re waiting.