The long recovery, the school visit, and loneliness at the edge of the spectrum

Janey is gradually, gradually getting better.  She spends less of her day in bed now, and walks much less hunched over.  She is starting to eat a little bit better, and we don't worry all day quite as much about her drinking enough.  But it's SLOW.  I'm very glad the surgeon warned us it would be, or we would be much more worried.

Yesterday, we went to visit Janey's classroom, to say goodbye to her teacher and pick up her stuff.  It was the last full day of the school year, although of course Janey's school year ended abruptly a month ago.  Janey was very happy to see everyone!  It took her a minute to take in that we were actually in her room, but once she did, she was all smiles.  It was wonderful to see.  Wonderful both ways---to see Janey happy, and to see her teacher and all the therapists and staff and aides that saw her so engaged with her, so happy to see her.  They all seemed to have a special thing they did with her, some kind of high five or dance or saying.  It was truly special to see.  We will miss Janey's teacher, Miss Jenn.  She was terrific with Janey, and so caring.  It was not an easy year for Janey, and she was with us every step of the way.

One thing that was interesting was how little attention Janey paid to the other kids.  They were happy to see her, and many of them ran over to hug her.  They had made her cards, which were great (and which made me see how Janey seems like the only kid in her class that can't draw or write)  She seemed to barely notice them.  I wonder if this is because many of them seem to operate at a lot higher level than her, or if it's just how Janey is.

Later yesterday, we visited with a woman and her daughter who we'd met because Freddy is friends with a son his age in the family.  The daughter is on the spectrum, although on the far other end from Janey.  Janey again paid not much attention to the girl.

Some day, I'd like to do a tour and meet in person many of the people I've met through this blog, to talk with them (wouldn't that be wonderful!) and to meet their daughters.  I feel like I've never met another family in person with a daughter like Janey.  It's a bit of a lonely feeling, that yesterday pounded home to me.  The autistic spectrum is very wide, and the edges of it are not as populated, especially's Janey's end, I am finding.

Another feeling hit me yesterday, a bit more positive one.  I realized how when I'm not around other kids, Janey just seems like Janey.  I don't spend a lot of time comparing her to where she "should" be.  It doesn't seem especially strange to me that she doesn't talk much, or that she screams a lot, or that she isn't toilet trained, that she can't read or write or draw.  Of course, I wish she could do those things, but that's not Janey.  Unless I'm face to face with others that can do those things, even though they have the same diagnosis as Janey, it just seems like---well, Janey is Janey.  I guess that's autism acceptance, in a way.  It doesn't mean that I don't feel sad that Janey's life is and will be very limited by what she can't do, but I don't spend a lot of time thinking how different she is from others.

The part that does make me angry is how there is so much less help for kids like Janey than there is for kids with less severe autism.  There is nothing for Janey except school, nothing.  No camps, no respite, no social skills groups, no friends, no lessons, nothing.  There is nothing.  That has been confirmed by talking with three social workers specializing in kids like Janey in the last month.  And it's why I am so grateful for her school.  I felt at home there yesterday---not quite as at home as I used to at her old school, but at home.  I felt like it was a place where Janey was accepted and loved. And there aren't that many places like that.  So thank you, Boston Public Schools.  You don't get enough love, but for our family, you've been wonderful.

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

Autism and Appendicitis Pain - A Scary Combination

Almost everyone with a child with autism has noted that they express pain differently than other kids.  This might seem like an odd little quirk, but the events of the last month have shown me it's far from that.  Janey's reaction to the pain of appendicitis almost certainly contributed to her appendix rupturing, and her post-surgical pain reactions quite likely make the complications she experienced harder to treat.  If I can get one message across ever through this blog, this might be the one...DON'T ASSUME KIDS WITH AUTISM WILL SHOW PAIN IN A TYPICAL WAY!

I keep going back in my mind to the night we thought Janey was having a seizure and we called an ambulance.  Of course we don't know for sure, but Tony and I both now think that Janey's appendix burst that night.  She had a high fever, and we were taking turns checking on her all night.  When Tony checked on her in the wee hours of the morning, her arm was jerking over and over.  She was burning up with fever.  The EMTs quickly told us it wasn't a seizure when they arrived, and the ER staff felt the same way.  But it was something.  I think now it was a reaction to the terrible pain she must have felt as her appendix burst.

Neither Tony or I can remember for sure if the ER staff checked Janey's belly (I have learned "belly" is the technical terms for what we untechnically call "tummy") for pain.  Janey was not presenting like someone with appendicitis, and she wasn't being co-operative.  It took 6 people to get a throat culture on her.  The ER doctor assumed she had some kind of virus, and sent us home.  Her blood wasn't tested, but even if it had been, that might not have shed any light on things, as when it was tested the next night, her white count was normal.  The key here again was how she was showing pain.  If she had been screaming, or if she had been able to say "My tummy hurts!", I think some red flags would have gone up.

Even once Janey was admitted to the hospital, after we took her back the next night, she wasn't showing the pain you'd typically see in a child with an appendix that had already burst.  Tony and I could see she was far from herself.  The big thing we saw was that she wasn't moving.  She lay in the bed in a very, very fixed position.  I think moving was extremely painful for her, so she just didn't move.  I remember a group of doctors coming in and one of them shaking her bed a bit, and when she didn't react, saying something like "Well, she doesn't have peritonitis" (an inflammation of the wall of the abdomen) because she didn't react to the shaking.  She didn't react, I think, because she was determined not to move at all.  She had on her face what I call the stoic look.  It's a look I see a lot on her, a look where she seems to just be retreating into herself and doing everything not to let the outside world affect her.  It's not a look that betrays pain.

This is an example of how typical kids are asked to measure their pain.

Thankfully, so thankfully, the CAT scan done eventually on Janey showed her burst appendix clearly.  But her atypical reactions to pain were still an issue after the surgery.  At first, she was just given morphine around the clock, but the days went by, sometimes nurses would ask me "Do you think she's in pain?"  I knew we didn't want to give her too much morphine, that too much could slow her recovery.  But so often, I just didn't know, even myself, if she were in pain.  It was so hard to tell if she was crying because she hated the IVs, or was upset to be in the hospital in general, or if a video had scared her...it was so tricky.  We could ask her "Do you have a hurty feeling?" and she would echo it back "Do you have a hurty feeling?"  If we asked her to point to the hurty feeling, I think she often took that as a cue she was supposed to point to SOMETHING, and sometimes it was her belly but other times the pointing just seemed random.  Thinking back, I wish I'd worried less about how much morphine was getting and erred more on the side of assuming she was in pain.  But I wish even more she could express the pain in a way that was easier to understand.

I am glad Janey and all of us have only one appendix.  I will not be faced with this particular situation again.  But speaking to all the families of an autistic child still possessing an appendix, my advice would be this----If there's a chance it's appendicitis, push for imaging to be done.  Ultrasounds didn't show the problem for Janey; she needed a CAT scan for that, but that might just be her.  Make sure the medical professionals know that how much pain your child seems to be in should NOT be used to rule out appendicitis!  This would also apply, I am sure, to any other potentially serious cause of pain.  I hope none of you ever have to use this knowledge.  Best of health to all of you.

HOME!

Yes, indeed, after 18 days at Mass General Hospital for Children, Janey is finally home.  It's wonderful to have her here.  I'm not going to write much tonight, but I know in the coming days, weeks, months and probably years, I'll be reflecting on this whole experience.  For now, I mostly just want to write a few thank yous.

Janey, right before heading home!

First, to my family and friends for being so supportive during this whole ordeal.  It was wonderful to have everyone at the other end of a phone line or an internet connection.  I loved the cards and even a few packages sent to me by people I don't know in person but know through this blog and feel very close to!  My local friends were great, and I most certainly could not have gotten through the combination of Freddy's graduation week and the hospital stay without them.  William and Freddy held down the fort at home and visited Janey often, and were their usual terrific selves.

The main entrance to Mass General

Next, to all of the staff of Mass General that worked with Janey.  It so very much shows that the whole hospital has been trained in autism, but beyond that, that the hospital seems to have a special air about it.  We've spent time in other hospital, but there was something about this one---a feeling of caring on a personal level.  Janey's surgeon, Dr. Cassandra Kelleher, took so much time to talk with us and to explain everything, and to show she saw Janey not just as a case but as a child, one she cared about.  The nurses---wow!  So many thanks to Karen, Daisy, Katie, Jenny, Vicky...and all the rest whose names escape me just now but who I will always be grateful to.  I never once, not for a minute, felt like Janey's autism was something they found difficult to deal with.  They listened to what we said would work best with Janey and did everything they could to make every procedure and test as easy on her as possible.  Everyone else at the hospital---the people who brought the meals, the staff in the playroom, the OT who wrote an autism plan for Janey, the CT scan people---everyone was respectful and kind to Janey and to us.

Janey is nervous in the elevator, but Daddy is right there as always

My biggest thank you right now is to Tony, my husband.  I think sometimes I don't mention often enough here what an amazing father and husband he is.  This was one of the toughest times we've ever gone through in our lives, and he was so wonderful.  He put his stressful job totally aside and took the last two weeks to just be with Janey, at her side.  He let me keep my sanity, and his presence helped Janey stay calm.  She loves Daddy like no-one else on Earth.  It's not an easy gig, being Janey's father, but he excels at it.

So---now on to recovery at home.  With everyone's help, I think we will make it.

Drink, Janey, Drink! Part 10

I most sincerely  hope part 10 is the last part of this saga written in the hospital.  Janey is ready to go home except for one thing---her drinking.  Talking with her surgeon on Friday night, she explained her eating, although not good, is not nearly as crucial as making sure she drinks enough.  You can go a long, long time without eating---Janey went about 10 days without anything but IV fluids---but you can't go long at all without drinking.  And Janey is drinking very little.  She did  better today.  She had about 20 sips of water, and quite a few times, she let Tony fill a straw with lemonade and then put it in her mouth.  All together, her fluid input by mouth was maybe 4 to 6 ounces, and that was with extreme effort.  That isn't enough.

Part of why Janey isn't drinking is the thrush in her mouth.  All the bacteria pretty much in her digestive system was killed by 2 weeks of three strong antibiotics.  So yeast was able to take over.  She has a terrible diaper yeast diaper rash and the thrush is also yeast.  It probably hurts her to drink, although she does seem able to eat things that aren't super easy to eat, like salami and onions.  Part of it might just be that she is sick of us trying to force liquids on her, and she is sick of the whole hospital routine.  I think if she were home, she'd drink more, but Tony isn't as sure, and I trust his judgement.  He's the best at getting her to eat and drink.

There was talk today about putting her on something to stimulate her appetite, but we have learned that not much seems to happen  in hospitals on the weekends.  Despite that, I am hoping tomorrow might be the day we go home, but it would more likely be Monday.

How do I feel about going home?  Mixed feelings.   I am scared, partly.  I'm scared because I now see how very much I don't know about Janey's health, and how quickly and scarily things can go downhill.  How will I know how serious things are, if a top-notch hospital first saw her very early Wednesday morning and didn't finally realize she had a burst appendix until Friday afternoon?  They know a lot more than I do, and they didn't see what was happening until things became hugely serious, leading to a recovery fraught with complications.  That is Janey.  She is hard to read, I know, and I am realizing it goes further than I ever even knew.

I am scared also because Janey is still tough in the ways she was before this all happened.  She has been, ironically, easier in a behavioral way during the whole ordeal than she has in years, but of course not for good reasons.  She has been in pain, on morphine a lot, out of it.  Now, as she starts to come back into herself, we are again seeing some self-biting, a little aggression.   And we have no more help, no more solutions, than we ever did.  In fact, we are more sure than ever there really isn't any help out there.  I talked to two separate hospital social workers and the hospital OT who is the autism specialist, and neither of them knew of a single source of respite or a single program that would help Janey.  I am satisfied, if that is the word, that none exist.  Except school, and school for Janey is over until maybe summer school.  There are two weeks left of school in Boston, but Janey will be home.  She is still too sick for school.

The good feelings about going home are, well, that I will get part of my life back.  I got into gardening in a big way this year.  The garden has been left almost all to its own accords for weeks now.  I hope I can salvage some of it.  Janey may be easier to entertain at home, or not.  I will be able to spend more time with my boys, and see the cats, and just not be in a hospital all the time.

In many ways, I feel like I haven't really even fully processed what has happened.  It feels unreal in a lot of ways.  Of all the things I worried about with Janey, the idea of her becoming seriously sick was right up with the last of them.  Life likes to do that to people, and sometimes when I am feeling sorry for myself, which has happened a bit more lately, it feels like it likes to do it to me in particular.  I don't like that feeling.  I don't like feeling sorry for myself.  I am working to get that out of my head.  But it sneaks back now and then.  Maybe I should just take a while to feel it, and then move on, because that is all I can do.  It's all all of us can do.

Eat, Janey, Eat! Part Nine

That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food.  Just now, as I started to write, we had a little breakthrough.  Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites.  She actually asked for it when we thought she was done and took it away.   It's the first she's really eaten without being seriously urged.  This morning, she ate a slice of onion---one of her favorite foods, and she's  had a few slivers of salami.  But that's about it for today.  That isn't enough.  She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry.  I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.

Otherwise, she is mostly okay.  Today is the last day of her antibiotics---day 14.  It's hard to believe this is day 15 overall in the hospital.  In today's drive-through hospital stay world, that's a long, long time.  She is walking with a lot more ease.  She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.

That's the physical part.  As Janey gets feeling a bit better, it's getting harder to keep her happy here.  Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything.  Now, she is getting bored, I think.  Thank goodness for the iPad.  For years, we resisted letting her use the iPad as an alternative TV.  The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn!  I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too.  Well, of course that is no longer the case.  We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock.  She loves the control, so she can watch as little or as much of a show as she wants.  I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.

I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed.  But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.

Thank you for reading, for your love and thoughts and prayers and support!  We have needed and will be needing it badly!

Part 8----Healing Slowly

Today, the surgeon said Janey's bowel sounds were NORMAL---a wonderful thing to hear.  It was the first time in two weeks that has been the case.  It was also the first time we heard the work "discharge" in terms of her going home, not with a date attached, but she  said something like "Now we can think about discharge someday!"  We are feeling cautiously optimistic, although the surgeon made sure we understood it's still a long, long road to recovery, and Janey would not be herself for a long, long time.  She  said Janey has had one of the most serious conditions that a child patient can have in a hospital, in terms of length of stay and time to recover.  But we are finally talking recovery, not just crisis after crisis.

Maybe with the getting somewhat better, Janey is acting more unhappy.   When she was so sick she could barely move, she didn't seem as sad as she does now.  I can think of only two  times she has smiled since she's been in the hospital.  She spends a lot of time just saying "Mama!  Daddy!" and making a sad whining sound.  It's hard to hear.  The big challenge is knowing how much of this is pain.  I feel like she's shown us that she has a huge tolerance for pain, and doesn't show  it in normal ways.  So it's up to us to figure that out.  She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly.  We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.

We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent.  We  walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly.  Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms.  It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.

Eating is the other challenge.  Janey is finally on a non-restricted diet.  She  can eat anything she wants.  She is still getting the IV nutrition around the clock, but of course we want to get off that eventually.  We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks  from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her!  Eating is an area where I think a misunderstanding of autism is common.  Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one.  But she isn't.  She likes to eat a very lot, and eats a huge variety of foods.  As we have found to be the case here, everyone listened to what we said.  They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.

My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy.  Seeing her have trouble even walking, or seeing her not enjoy food--it's sad.  Those were her "normal" joys.  I have to admit I've had some moments of thinking this all just isn't fair.  Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons.  Wouldn't one or another be enough?  I try hard not to get discouraged, to feel put-upon, to cry much,  at least until I have a day alone, but at times, I am having a hard time with it all.

The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015.  It was a wonderful ceremony, and I am so proud of my newest high school graduate.  Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him.  It is not how I ever pictured his graduation night being, but life is often not what we pictured.  Watching him get his diploma was one of those moments when life was more than I ever expected.  And Janey is getting better.  She will get better.

Part Seven---Drain, drain, go away

Of the days we've been in the hospital, yesterday might have been the least eventful.  Janey ran a fever a bit, had some pain and got some morphine for it off and on, took some good naps and just hung in there.  The down side of yesterday was that she noticed her drains, and started to try to touch them and pull at them.  They are tubes coming out of her belly, with bags attached.  They drain out fluids (if you've stopped reading by now because you are a little faint, you are like I would have been before going through this).  Twice a day, a surgeon injects them with the same substance given to people who have had  a stroke.  This is to break up clots and keep them flowing.

Janey is trying to get at the drains off and on all the time now.  When she really gets going, we have to put a soft restraining thing on her arm with Velcro, which keeps her from using her elbow.  She always has one of these on the other hand, to cover the PICC line, as it would be very, very bad if she got at that, so I hate to cover her free arm, but I would more hate for her to infect the drains or pull them out.  The nurses are so wonderfully reluctant to use any restraints.  They try everything else first.  But at times, it's more important than anything else to keep her safe and healing.

This morning, we took Janey for a walk around, which is quite an operation as it's hard to get her to standing without causing her pain, and she gets tired very quickly.  But we walked to the child life room and she enjoyed looking at the fish, then we got a wheelchair and walked to another fish tank.  Then she was very tired out and we went back to the room.  It is hard to see that Janey is that sick, that a simple walk is almost more than she can do.

I slept the most last night I have in a while, thanks to Tony staying awake a lot.  It's strange that this makes me feel more tired today.  I think when I get a little rest, the adrenaline or whatever keeps me going stops pumping out, and I am not as able to run on fumes.

Talking to the surgeon this morning, we decided it was better that one of us be here for Janey during Freddy's high school graduation tomorrow.  I wish we could both be there, but Freddy understands, and we will have other friends and family there.  Tony is going to stay with Janey.  I keep thinking how Janey was born on Freddy's seventh birthday, and in some ways, he's been sharing the time for his big events since then.  He is an amazing brother to her, and we are so proud of him and of William.

So the story goes on.  It's a story that if you had told me two weeks ago we were about to start, I'd have not believed you.  And I do hope before too too long, it all again feels like a long ago, unbelievable dream.

Janey's burst appendix story---Part Six

When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses.  The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses.  That wasn't exactly what we wanted to hear, but I am so glad they did look for them.  Her head surgeon came in a bit later and explained things to us more.  Janey had 5 abscesses.  She was going to need interventional radiology to put drains in them.  At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication  and draw blood, without having to do lots more IVs.

Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery.  We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).

The big question last night was whether I would go to her brother Freddy's Prize Night.  The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday.  I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery.  After talking to the surgeon and to the nurses, I did decide to go.  Tony stayed here and promised to keep in touch with me by text, which he did. 

The night was wonderful.  It was held at an old church building on the campus of Harvard, a beautiful venue.  There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy.  My emotions right there were about as intense as emotions get.  Watching the prizes get given out was so interesting.  Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.

Then it was back to reality.  Janey had come back from surgery while I was gone.  I saw her drains, which are a little scary to look at but not that bad.  They were able to drain 4 of the abscesses with 3 different drains.  One was too surrounded by bowel to be able to drain.  Hopefully that one will resolve on its own.  Janey was doing remarkably well.

Today, Janey isn't feeling quite as good.  Her fever is up a bit, which was sort of half expected, and she was in a bit of pain.  They authorized clear liquids, but she had just a sip of apple juice and later threw up.  Her stomach just isn't ready yet.

I have to say here how wonderful almost everyone at this hospital is.  The nurses on our floor are just plain amazing.  They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow.  The surgeons have also been great, especially the surgeon who did the original surgery on Janey.  She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.

And---Janey has been amazing also.  Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in.  She is alert and watches everything, and is learning new terms.  Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.

Sleep is the toughest thing.  We got some last night, but I am living in a constant state of tiredness.  Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat.  This may be the most effective diet I've ever been on.

Writing in this blog and hearing from all of you truly is keeping me going.  I need this writing more than anything.  I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story.  I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little.  So I will close for now, until part seven......

Janey's burst appendix story----Part Five

I very much hope this story doesn't get more than a few parts longer.  Yesterday, that was looking more likely.  Today, not so much.

Janey got moved back down to the regular ward yesterday afternoon.  We were very hopeful when that happened.  Her surgeon thought her belly felt much better, and had digestive sounds, and although she had originally planned on getting a CAT scan, she cancelled it.  There was also a lot of talk of getting her a PIC line for nutrition, but with the belly seeming better, it was decided to give her a day to try to start eating, and she was allowed clear fluids.

However, she didn't have much interest in eating (or drinking, really).  She did have some ginger ale and a bit of lemon ice, but mostly she pushed away anything we tried to give her.  She also seemed to be in more pain, although she hasn't had a fever in almost two days now.  She was restless.  The room we are in has two beds, and she was determined to move to the one she wasn't on.  So determined that she knocked out an IV trying to move once and then loosened one another time, sending out blood.  She also is still having diarrhea, lots of it.

So this morning, her surgeon decided to order the CAT scan after all, and she is there now getting it (with Daddy)  She thinks she has an abscess forming, and that would need to get a drain.  They also are going to finally get the PIC line, as Janey is getting thinner and thinner.  She is looking bony.  She hasn't had real food for 11 days now, which is just way too long.

It's hard to believe all this is still going on, but in other ways, it feels like it's been going on for a lifetime.  I feel like I can barely remember life outside this hospital, at times.

Last night, Tony slept here where I slept in the extra bed.  Usually, I have him sleep at home or in another room, because he is a heavy sleeper and I am not, and we want to hear what is going on.  That was the plan yesterday, until I just felt I'd hit some kind of limit.  It wasn't tiredness---I've almost gotten used to that.  It was a feeling that I could not longer make decisions.  I could no longer tell if Janey was having an issue I should call the nurse about, if she were fine or not fine.  I think I'd had so many days of total vigilance that whatever brain system handles that was no longer working.  So Tony took over that, and I went and ate some dinner and sat in the parent room and read.  It helped.

My mind is still too much of a whirl at this point to be sure, but I think I know what I need to do when this is over.  I need to reach out to those in medicine that deal with autism.  I need, in some way, to educate those non-autism specialists what autism looks like, and crucially, how to proceed when dealing with a child that might be critically ill but doesn't show it in typical ways.  I talked yesterday to a woman here who is kind of an autism liason with the hospital, and she mentioned I might want to try to join the parent board of the hospital, as she thinks they don't have a special needs parent.  I am far from a joiner, but that might be something I have to try.

So---we'll be here for a while yet.  Yesterday there was talk of us getting home by Monday, which is Freddy's graduation day.  Today that talk seems to be gone.  Of course, that could change again tomorrow.  I've figured that much out there---it's an hour by hour thing.  You can't really make plans, because Janey's body is the one making the plans.  I hope it's planning for a full recovery in the fairly not so long future.

Janey's burst appendix story---Part Four

The story continues.  There isn't as much to report this time.  Janey is still in the PICU.  Yesterday, she had the ultrasound to see if she had an abscesses, and thankfully, she didn't.  It did show she is still very affected by the horrible infection she had after her appendix ruptured, and that her intestines are very stretched out.  But she didn't need to have drains put in, so that was great.  She has had a fever most all the time---it goes down when she gets the IV Tylenol, but then goes back up as it wears off.  It's not a high fever, but it's not great she keeps getting it.

We were waiting a lot yesterday for her to have a "pick" line put in.  I am not sure that's the right term, but it's a special IV line which she can get nutrition through, as well as all her antibiotics, and it could be used to draw blood, too.  As I've figured out about the hospital, there is a lot of waiting, and plans change.  From what I can gather, there is sort of an argument about whether she should have this line.  She needed the nutrition, so they are giving her a different kind that can be put in a regular IV.  She has a big bag of cloudy milkshake looking stuff going into her.  I guess the worry is that she might have a blood infection of some type, and that would not be a good thing with the pick line, or on the other side of the story, she might start being able to eat soon and the pick line would be overkill.

She did start moving her bowels yesterday, over and over and over and over.  It's amazing what she put out considering she hasn't eaten now for 10 days.  At first we were excited she was going, as it meant her digestive system might be recovering, but now the thought is that it might be a bit too much, and they are going to do tests regarding that.

She slept fairly well last night, after finally getting to sleep around 1 am.  I slept better too, at least in terms of a hospital sleep.

So---it goes on.  I did go home yesterday for about 4 hours in the afternoon and evening.  Tony and Freddy convinced me I just had to.  It was probably good I did, but I didn't sleep at home, and taking the subway and train both ways resulted in my net rest being far less than it would have been if I just stayed here.  But I had a few bills I really needed to take care of, and it was good to see my garden, which with our recent rain has gone from being very dry to being overcome with weeds. 

The boys have been incredible.  They have visited a lot, held down the fort at home,  and just been so much support to us.

Janey is a bit miserable this morning.  I think she's just tired of being here, and her stomach is hurting, and she's just not having fun. I can't blame her.

The plan for today is to see if she can eat, and to try to figure out if she has an infection.  Yesterday the plan was to get her back to the regular ward today, although I'm not sure if that's still the case.  I've figured out everything happens in the morning in hospitals, when doctors come around, and the rest of the day seems to be mostly waiting for things and just healing, which is fine.

I very much appreciate all your thoughts and prayers.  I am not much of a prayer myself, but I have done a bit of it too.  I would probably call myself an atheist, but the last few days I'm more of an agnostic, the kind of agnostic that hopes somehow someone is out there hearing my pleas for Janey.  But it's wonderful knowing how many people are thinking of Janey so much.  Thank you.

Janey's Burst Appendix Story---Part 3

If I could make wishes come true, this part of the story would be featuring us getting ready to go home, Janey almost all better.  But I can't make wishes come true, so I'll have to tell the story as it is happening.

Yesterday morning, Janey's oxygen was still a big issue.  The plan was to get her up and walking around more, to try to get the fluid that had built up in her lungs down.  She had gained 13 pounds of water weight in 5 days, without eating literally anything at all.  So the swelling was pushing on her lungs, as a chest x-ray showed.  We tried a walk around the floor, followed by Janey sitting up in a chair.  She got very, very tired from this, and when she got in bed, she went into a sleep that was very hard to wake her from.  If the oxygen mask left her face even for a minute, her oxygen went down, sometimes as low as 77, which is very low indeed. 

One of the doctors on her surgical team came to see her, and it was decided it was time to take her to the the PICU, the Pediatric Intensive Care Unit.  It was too hard to wake her and her breathing was too compromised to stay in the regular unit.  So around 2 pm, we were moved to the PICU. 

To work on getting Janey's fluid down, she was given a diuretic drug.  This worked pretty well.  Her swelling went down quite a lot, and gradually, as the evening and night went on, she was requiring less oxygen and was breathing better.  By morning, she was on room air.  Her oxygen levels now are around 93 or so, without oxygen---not perfect, but okay.

I got to listen in on her rounds this morning, where her case was discussed.  At that point, people were feeling better about things, and it was decided that if she stayed stable, possibly she would be able to go back to the regular floor this afternoon. 

Janey hasn't eaten really anything since last Monday, 8 days.  She's had IV fluids, but no food and most of the time, not even any water in her mouth.  The doctors said today she could have water, and clear liquids.  We offered her a choice, and she decided on a juice box.  She drank literally one tiny sip of it and threw up.  An hour later, she threw up again, far more than she had drunk.

By chance, the surgeon that had done her surgery was walking in the door as Janey threw up.  That started a discussion.  Janey's fever has never gone totally down for more than a few hours.  Today, it is higher than yesterday.  So, since she has shown her gut is still not working at all, the surgeon, Dr. Kelleher, said she might have an abscess in her digestive trait, as she had warned us could happen. 

So---tomorrow she will have an ultrasound to see if there's an abscess.  If there is, she will have a drain put in to work on clearing it.  That will not be fun.

Either way, it's probable that tomorrow she will have a special IV put in to allow her to get nutrition in an IV.  I think this is called TPN.  Her water drinking privileges are over for now.  She will stay in the ICU for at least another night.

Those are the facts.  My feelings---well, I will hold off on getting  into a lot of those.  It's all too raw right now.  I'll just say that just after she came to the ICU yesterday, I went to get something to eat while Tony was with Janey.  Somehow, my mind was such that I went outside and got lost.  I walked around the huge hospital complex aimlessly, unsure how to find anything, and pretty much not caring.  It was raining hard and I was numb to that and everything else.  When I finally ran across the front entrance, pretty much by change, and found my way to the cafeteria, I felt like I had forgotten how to do the most basic things in life.  There were lines to get hot food, but it seemed far too complicated to do that.  I grabbed the first sandwich and soda that hit my hands, and sat down to eat them.  I was mostly done with the sandwich when I realized it had olives in it.  I hate olives with a passion.  Then I looked at my soda.  It was Sprite Zero.   I hate diet soda.  All this to say---I was completely, totally, absolutely out of my head overwhelmed.

I calmed down after that, and today I am feeling back like myself, in reality.  Not to say it feels like any reality I expected to happen.  I would not have been surprised at many things that could have happened with Janey, but this?  She has barely been sick a day in her life. 

I was thinking how it would feel in the pre-internet world to be here.  As scary as this all is, I don't feel alone.  When I was awake in the middle of the night last night and wrote a post on Facebook, people saw it and commented within minutes.  That's an example of the miracle of having friends all over the world, people I have never met in person but that I have met with my heart.  Thank you, friends.

Janey's burst appendix story---Part 2

It's about 5 in the morning here at Mass General.  Janey is finally settling down after an ordeal I'll write about later, Tony and Freddy are sleeping and I am feeling rested after about 3 nice hours of sleep---not even being sarcastic there.  So I thought I'd write more of Janey's appendix story.

When Janey came back to her room after her surgery, she was of course very sleepy.  She also was having trouble keeping her oxygen up, so she was on an oxygen mask.  If she took it off, which she did sometimes, even in her sleep, her levels of oxygen would go way down.  If they got lower than 90, an alarm would sound.  That was eventually changed to 85, as the alarm was going off so much she couldn't sleep.  We got through that first night---Tony went home for a bit to sleep.  I got maybe an hour's sleep, but I was hyped enough that it was okay.  Our plan was for my friend Maryellen to pick me up in the morning and take me home for a while, probably until 4, so I could sleep at home and do a few vital house things.

I went home as planned, and didn't sleep right away, because I just couldn't.  My mind was racing and I had to do something to rest it---so I watered all my plants and planted some new hostas I had ordered.  I have found I always need a fairly obsessive hobby to keep me from going crazy.  Right now it's gardening, and it felt good to just indulge myself a bit.

Then I went inside and called Tony, and found out all hell had broken loose at the hospital.  Janey's fever had spiked to 105 under her arm, which is more like 106.  Way too high, obviously.  So they did an emergency chest and stomach x-ray, right in our room, to make sure there was not some big issue there.  There wasn't, except for expected things, so they put her on IV Tylenol (which for some bizarre reason is the most expensive IV drug you can imagine, and which my sister tells me many hospitals won't use at all, and which they had to get special permission to use here, and the IV nurse had never even heard of it), which worked to bring down the fever.

Maryellen drove me straight back to the hospital after hearing what was going on.  I am very grateful to her.  Janey had calmed down some by then, and was happy to see her   Except for some more fever spikes, not as bad ones, and some more struggles with her oxygen levels, the rest of that day was okay.  Tony went home to sleep, and I tried to sleep, but that night her oxygen was constantly going below 85 and setting off the alarms.  The nurses would come, but I would of course wake up and fix her mask.   I didn't sleep except for an hour or so.  I called Tony about 2 am and asked him to come back at 4, and when he did, I caught some sleep.

When I woke up, once again crisis had brewed, as her oxygen problems were concerning enough they did another x-ray, to see if she might need the ICU.  It was about the same as the day before, so they didn't.  My friend Christine came to help, and that was great---Janey was so happy to see her.  I was too, as I slept a bit more!  Then, again, crisis, as when Janey woke from a nap,  her pain was so much it was overwhelming.  She screamed in pain, and started gagging like she was going to throw up, and just looked like something very, very bad was happening.  It was so scary.  She was given some morphine and finally she calmed down and slept some.  We had another episode like that when she woke again.

Because her oxygen was being such an issue, it was important for her to sit up and to walk.  So even with all the pain, a few times we got her sitting in a chair and we once did a walk (with tons of help) to the Child Life room down the hall.  She got worn out by that and we took the wheelchair back.  The Child Life room was amazing.  When Janey is better, I think she will love it.

Freddy came last night to help out in the night.  We all three stayed here.  But even with that, Janey constantly took off her oxygen mask, and when she did, the levels would drop to scary levels---as low as 77, which if you have a child with asthma, as I had two, you know is one very low level.  A few hours ago, Janey got enough of her old spunk back that she was fighting the mask extremely hard---taking it off and tossing it, pushing it off constantly.  The great nurses tried everything---using nasal canulas instead, trying different way to put on the mask, but it just wasn't working.  Janey was getting dangerously little oxygen.

So, finally, we had to put her in restraints.  That was hard to do.  By the end of the about hour it took to get that done, the nurses had gotten an advanced degree in Janey Strength and Determination.  She managed to get out of the restraints several times before we got them right, she turned her head quickly to try to bite a few times---one of the nurses said "You have a special kid there"  He wasn't saying it in a bad way---just saying what is true.  Janey is not easily kept from what she wants.  Now, though, at last, she is getting the oxygen she needs to recover.  One of the surgeons came in to tell us how sorry he was they had to use the restraints.  I told him, and meant it, that we know they did everything they could to avoid it.  Janey's recovery comes before anything, right now.

And here we are, for the foreseeable future.  We will not being going home very soon.  She can't eat yet, she can't walk without support, she can't breathe without oxygen help.  She is in a lot of pain and still spiking a lot of fevers.  This is going to be a long haul. 

Janey's autism is affecting every part of this medical journey.  It made it hard to diagnose what was wrong, and it is making it challenging to treat her.  I am so pleased still with the care we are receiving.  Mass General will be Janey's hospital for life, I am pretty sure.

We are tired, we are still in shock but we are grateful, to still have our Janey, to have all the great care here and so very much, for our friends around the world that care about Janey and support us so much.