One year ago today

A year ago today, Janey had emergency surgery to remove her burst appendix.  The surgery was preceded by days of extreme sickness (the surgeon estimated it had been burst for 3 days before it was removed) and was followed by weeks of complications----a stay of three days in intensive care for breathing problems, another surgery to place tubes due to abscesses, being fed by TPN into her bloodstream for quite a while, much weight loss---it's hard to believe it all happened, looking back.

In a lot of ways, the health crisis changed how we look at life with Janey. To put it in a slangy way, we don't sweat the small stuff as much.  We focus more on making Janey's life happy and calm.  I think it's safe to say we decided to change our behaviors instead of trying to get her to change hers.  We did this at first because for several months, she was still very affected by the hospital stay.  She was, as the surgeon told us she would be, debilitated.  It was important to focus on very basic things, like making sure she ate and drank.  

To our surprise, life with Janey got easier, overall, when we tried less to change her and more to change ourselves.  That's not why we did it, but we realized that if she's happy, everyone is happy.  If we keep her calm, we all can live our lives a bit more.  

Of course, there's no miracle change.  There are still days when Janey screams a very, lot, cries constantly, gets frantic for reasons we don't understand.  But there are less of them, and they feel less desperate.  They don't seem to last as long or usually be as intense.

In the hospital, Janey watched "The Spongebob Squarepants Movie" about 50 times.  Since then, she's watched it maybe 100 more times.  That's a good example of a change we've made.  I used to always try to get her to watch new things, or, heaven forbid, not watch anything when watching TV was what she wanted.  Now, we let her watch what she wants, when she wants.  She doesn't watch more TV, I wouldn't say, but we relax and let her enjoy it, and enjoy the time it gives us.  Believe me, that was a breakthrough for me.  I always pictured myself with kids that shunned TV and instead played with wooden organic toys and begged me to let them get one more library book.  But that was me---my dream, my vision of parenthood.  

Janey sleeps every night with a pillow covered with a flannel pillowcase she got in the hospital.  I looked up just now to see the name of the charity that makes pillowcases for children's hospitals---it's Ryan's Case for Smiles.  Janey has never been attached to any object like she is to that pillowcase.  She looks for it the minute she comes in the house.  That's just one example of all the kindnesses we were shown at Mass General Hospital.  If you have to have a child spend almost a month in the hospital, that is the place to be.

I feel like this post is disjointed, and that is partly because my mind keeps drifting back to a year ago.  Of all the things I ever worried about with Janey, a severe physical health crisis was about the last.  I wish it all hadn't happened, of course, but it did, and the perspective it gave me has changed me.  Our kids, all our kids, are precious.  It sounds like a sappy card, but I realize you can't take a single day for granted.  Janey, I am so glad you are with us today.

Scoliosis Appointment

Today was Janey's scoliosis appointment, the second in what will be a series of appointments to see to what extent her scoliosis is worsening or getting better.  It was a tough appointment, and it made me think a lot about how hard it is to truly access effective medical care for our kids.

The appointment was at eight in the morning, so the first issue was that Janey didn't go to school on the bus.  That's a change of routine, but she was actually excited about it.  She hopefully asks almost every morning if we can go for a car ride, and today, she must have thought we'd finally come to our senses and forgotten the school nonsense and just decided to take her driving.  She was cheery right up until we got called in for her x-ray.

At first, the technicians tried to give Janey a very high tech x-ray, in a booth where she'd have to stand still for thirty seconds with her hands up high while her back was scanned.  They asked me if I thought she'd do it, and I said it was a possibility.  Janey sometimes surprises us greatly with her cooperation at such things.  The last time she had an x-ray, when she was in the ER with pneumonia, she was great.  But this time---no.  The booth freaked her out.  She started screaming.  They quickly decided to switch to a more conventional x-ray, but that involved waiting for another room to be set up.  Janey and I had to wait on some chairs for a little bit.  Everyone was quick and friendly, but Janey was not happy.  She screamed at the top of her lungs and bit her arm and tried to bite me.

Thankfully, we quickly were in the other x-ray room.  Here, Janey calmed down a lot.  I put on  a lead vest and was able to hold her hand as she stood against the wall for that x-ray, and she was totally still, so they could get a good read.  I was very proud of her.

Another quick wait in the waiting room led to more screaming.  The room was full by that point of girls about Janey's age, there I am sure also for scoliosis checks too.  With Janey's screaming, I didn't have time to look at them  much, which is in some ways good.  It can be hard to see kids her age reading, having involved discussions and basically doing a lot of things Janey doesn't do and probably will never do.

Then, on the exam room.  Janey was highly agitated by then.  She wet herself, through her pull-up, all over the exam table and her clothes.  We cleaned up as best we could, and then the doctor came in.  He tried to look at Janey's back, and she twisted and turned, making it hard for him to examine her.  We tried to hold her so he could, but he said "No, no, it's not necessary"  I was annoyed at that.  YES IT IS necessary, when you are there for his expertise, for him to be able to see her.  I'm not an orthopedist, and maybe the x-ray tells him all he needs to know, but if he usually views a child's back, I want Janey's viewed too.  But in the midst of the screaming, and with him quickly moving to the computer and talking in a low tone about what he was seeing, I had to just listen and couldn't or didn't speak up.

When the doctor saw the x-ray, he asked if I'd held Janey's hand for it.  I said I had, and he said that made it hard to tell what was curvature and what wasn't.  Well, no-one said I shouldn't hold her hand.  I had done it to calm her, but that was at probably the calmest part of the appointment, and she might have been fine without it.  Again, we were there to get a good idea what is going on with her, so it's frustrating to not get that done to try to keep her happy.  Anyway, he said last time her curvature was 16%, this time it looked to be 20%, but "that's within 5 percentage points so it's really the same"  He said she still had a lot of growing to do, but then asked when she had gotten her first period (last September) and how old she was.  He thought she was 13, and when I told him she was 11, he looked at the x-ray part that showed her hip and said "she's not going to grow a lot more.  This isn't how most 11 year olds look" As runs in my family very heavily, Janey went through puberty very early and has a body that is far more womanly than most 11 year olds.  I didn't grow much at all after 11, nor did anyone in my family.  So her current just under 5 feet might be as tall as she gets.  I'm not sure how this affects the news about her scoliosis.  From what I could gather with the screaming, it might mean it's too late to do much about it.

We see the doctor again in 6 months.  I left the appointment feeling overwhelmed and frustrated.  I don't think she got the exam she would have gotten without the autism and tough behaviors.  I am not blaming anyone here.  I know her behaviors are on the extreme end of the spectrum, and that these doctors and technicians are not autism specialists.  Everyone was kind and tried hard.  But my feeling is that no matter how tough a kid is, give them the SAME CARE anyone would get, even if it involves upsetting them.  Five minutes of being upset and screaming is nothing compared to what can happen otherwise.  I think always, of course, of the horrible night when the emergency room missed Janey's probably already burst appendix, because they didn't want to further "upset" her.

I've heard from a few fellow mothers lately about pediatricians simply dropping or trying to drop girls with low functioning autism.  We are lucky in where we live.  We were able to switch Janey to a pediatrician that seems wonderful.  We have Mass General hospital, a top notch hospital with a commitment to caring for people with autism.  We have two kinds of insurance for her, and so financially can afford to get her whatever care she needs.  But still, with all that, Janey's autism limits our ability to get her the same health care another child with autism would be able to get.  Although the reasons for this are many, it's a situation I find hard to accept.

Grateful as well as angry --- a pneumonia story

It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.

When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see.  Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol.  She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106.  I called the clinic and asked if we could be seen sooner, and they said to come right in.

Finally, we saw Janey's own pediatrician, a doctor I like more every day.  Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate.  Janey was screaming and moving around.  Then a couple people came in and took a nasal swab for flu.  Again, we had to hold her down.  When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106.  The doctor was startled.  We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal.  She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm.  Finally, someone was seeing that Janey really did have a high fever.

At this point, Janey's skin looked odd---mottled and pale.  She was coughing an increasingly deep cough.  The pediatrician made the call to have her taken to the ER by ambulance.  As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types.  The ambulance showed up and we took a siren-filled ride to Mass General.  Freddy was with us, and he rode in the front.

So---back to the old Mass General ER, site of absolutely no help the previous Saturday night.  But I knew it was the gateway to great care, if we got admitted.  The plan initially was not for that, though.  A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad"  The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.

Janey cooperated for the chest xray in a way that was truly amazing.  She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them.  I was shocked at her understanding and cooperation.  The chest xray came back showing she had pneumonia in her lower left lobe.  The blood work showed a low white blood cell count.  And after a change of shift to a different "big boss", Janey's fever started to come back up.  She was shaking violently.  It wasn't time for more Tylenol or Motrin yet.  And finally, around 9, we were told she would be admitted.

It took until about midnight to get into a room.  The time in the ER felt like purgatory.  Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep.  He came back in around 10 as we waited for a room.  Janey was looking sicker and sicker.  Finally, we were taken up to our room.

Going back to the pediatric floor felt bizarre.  We had spent nearly a month there last May with Janey's burst appendix.  It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.

That night, Janey's fever spiked very high again.  She was put on IV antibiotics.  The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May.  He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care.  Finally, on Wednesday afternoon, she had her last fever.  Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released.  Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.

I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia.  Part of it is just that I've realized it often takes anyone a while to get treated.  So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better.  But part of it is her autism.  I pinned it down to two crucial events/reasons...

The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all.  I KNOW her temp was extremely high then.  Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up.  In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat)  But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then.  The feeling was---don't force her to get her temperature taken and "upset" her.  Well, that is my fault.  I knew it needed to be taken, but I didn't insist.  We all fall victim to not wanting to upset her.  But---the same standard has to be used for Janey's medical care as any other child's care.  If someone shows signs of a terrible fever, they NEED to have their temperature taken.  Maybe not at home, but it needs to be taken in a medical office, and recorded.  That was the first fail.

The second fail was the first ER visit.  What a joke that visit was.  Janey's fever was down, and I was not listened to.  I tried my damnest to voice that Janey does not show illness or pain normally.  I wanted blood done, I wanted a chest xray.  But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine.  That is where the autism comes in.  Janey was ACTING fine.  A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was.  But Janey, when she felt better, acted fine.  She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull.  And I didn't press hard enough, I guess.  So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.

I am left feeling a few things.  One is angry.  I am angry that yet again, Janey's autism prevented her from getting timely care.  Another is grateful.  We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly.  She communicated with the hospital and with me, and she was firm in what she said Janey needed.  We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General.  Many of the doctors and nurses remembered Janey well from her last visit!  It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses.  We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.

And now, a day of rest.  Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up.  I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap.  And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.

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.

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.

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.

Janey's Burst Appendix Story---Part One

Wow.  Thinking about the past few days---wow.  It's truly hard to take in what has happened.  I think this experience will take a lot of blog posts to really explain and process, but here as Janey sleeps at Mass General, I'm going to try to start telling the story.  If I don't make sense here and there, I'm operating on a minimum of sleep!

I wrote about Janey's visit to the ER early Wednesday morning, when we thought she had a seizure.  During the day Wednesday at home, it was obvious to me that she was not doing well.   We looked at a list of reasons to take her back to the ER, and she had pretty much every one---high fever, hard to wake up, not eating, lots of diarrhea, etc.  At 6 pm we made the decision to take her back in.  I was on no sleep, so Tony took her along with her brother Freddy.

The ER staff was concerned to see her back.  They started testing her to try to figure out what was up.  As before (and as we have found right along here), everyone was very, very respectful of her autism and the fact she might be showing how she felt differently than other kids.  They did blood tests, which showed she had an infection of some kind, and they started her on an IV.  It was decided to admit her fairly quickly, to try to figure this all out.

The next day, Thursday, she seemed overall better.  Her fever was a little lower, she seemed in less pain, she was eating a small amount.  They did an ultrasound, which didn't show much---they couldn't  see her appendix at all.  By Thursday night, when the doctors came to see us, they were talking about her going home---that she probably had a bad stomach flu. 

That was when Tony and I told them something, and they listened to something, that very well, not to be dramatic, might have saved Janey's life.  We said she was acting VERY much not like herself.  She was calm, too calm.  She wasn't moving around or trying to get up at all.  She was letting people do things like put in IVs without much protest.  She was a model patient.  And that is not Janey.  I am so glad the doctors listened.  Based on that, Friday morning, they did another ultrasound.  When it again didn't show much, and her blood tests showed her infection was growing (although her white blood cell count was fine), they did a CAT scan, just to be sure.

The CAT scan was an amazing experience, in how the hospital handled it.  The lead nurse went with us.  This was partly because she herself has a 22 year old son with autism and aggression.  She is part of our club.  This was huge.  Everyone listened to what I said would work and not work with Janey, and with that, she was wonderful for the CAT scan.  She stayed calm and actually seemed to enjoy it.  And they got a perfect view of what was going on.

What was going on, of course, was a ruptured appendix. 

Things happened fast after that.  Around 1, they told me she would go to surgery in an hour.  I called Tony at work.  He works close to the hospital, and came right over, just in time to come with us to the ER.  The ER staff talked to us for quite a while, about how the surgery would be done, what complications might come up, and a bit, how serious this situation was.  We were able to go in as she was put under.

Waiting in Janey's hospital room---what can I say?  All I can say is when they called and said all had went well and we could come down to see her as she came to----well, that was a good moment.

Out of surgery, Janey was out of it.  The surgeons explained her large intestines had been totally filled with pus and infection.  Based on this, they guessed the appendix had burst three days before.  Three days.  Three days Janey must have been in intense pain, with an infection growing and growing and growing.  But although she was certainly not happy, she didn't act like someone with a burst appendix, and that is a hugely important point.  Our kids DO NOT ACT like other kids when they have a serious illness.  In Janey's case, even her blood didn't.  Her white count was perfectly normal---something you just don't see with a burst appendix.

I will write more about what has been happening post surgery later, maybe later today.  It's been far from a smooth recovery.  We will be in the hospital for a while.  But I wanted to get this much down, and to say, right away, that the two biggest lessons for me here are----one, realize that Janey might be far sicker than she lets on, and two---get medical care from people who listen to parents and care about understanding autism.  I will follow those rules from now on, like her life depends on it, because it might.

Probably not a seizure

This is one of those posts I'm writing more just to for myself than anything, to record while it's still fresh in my mind how things went down.  I'll start by saying that Janey should be fine, that we don't think know she actually had a seizure, but that we had a scary night and she is still pretty sick (she's fast asleep next to me as I write)

The night before last, Janey slept almost not at all.  She finally went to sleep about 2:30 and woke at 4:30.  She seemed fine when she woke up, as she often is after not sleeping, and I decided to send her to school, as she has often done well at school after not sleeping.   And I need a nap.  So off she went to school.

Her great teacher emailed me several times during the day, telling me that Janey was very sleepy (I had written her to let her know how little Janey had slept).  They woke her for lunch, but she was angry about that, and woke her again for the bus, and I guess she got furious then.

When she got home, I realized quickly she had a fever.  She very, very rarely gets sick, and when she does, it's usually a mild cold.  But this was quite a fever.  Her temp. was going up and down but around 103-104.  I gave her Tylenol, and then decided to call the doctor on call at the Lurie Center.  This was because the medication she had started taking (and which we are now taking her back off, Abilify) has a rare side effect of high fever and stiff muscles that can be very serious.  I talked to a nice doctor who said it didn't sound like that is what she had, and to see how she was in the morning.

Janey slept very, very sounding all evening.  So soundly I got nervous, and tried to wake her by loud noises and then putting some water on her leg, and finally did wake her enough to have her have a drink and to see she was still lucid.  But she was certainly sleepy.

At 2 in the morning, Tony woke me up.  He had checked on Janey and she was shaking.  The shaking was like nothing I've seen before.  It was rhythmic, and just in her right arm.  As I watched for a few seconds, it seemed to spread to her leg now and then.  I decided to call 911.  I wasn't completely panicked, as I know fevers can cause seizures and that autistic kids are at a higher risk for seizures, but I was scared.

The ambulance arrived quickly, and the EMT saw the end of her shaking.  It had gotten to be less by then, and they said it didn't look like a seizure, just shakes from a fever.  Janey and I got in the ambulance and I asked them to take us to Mass General Hospital, as that is the hospital associated with the Lurie Center.

In the ambulance, Janey was very, very hot.  To cool her down, they put an ice pack behind her head.  Her oxygen levels weren't great, and they tried to give her oxygen, but she pushed it away violently, which was actually kind of good to see.

Mass General has a little section of their ER just for kids.  It wasn't busy, and we were seen quickly.  The resident who saw us did a basic check on Janey, but Janey wasn't having any part of having her throat looked at, so she decided to wait to talk to the attending doctor to see what to do next.  When that doctor came, he attempted to look at her throat also, and she went crazy.  They called everyone in, and finally, after a few attempts with six adults holding her down, they were able to do a throat culture, which came back negative for strep.  They made the decision not to check her urine, as since she is not toilet trained, that would involve a catheter.

We were of course most concerned about what we thought was a seizure.  The doctors said that usually after a seizure, a person is extremely out of it, and that was not the case with Janey.  She talked to the EMTs---actually talked to them amazingly well.  I was grabbing my pocketbook as they took her out, and the EMT told me Janey asked her "Is my mama coming with us?"  I can hardly believe she said that, as that is an amazingly direct and clear question for Janey, but the EMT had no reason to not tell the truth.  So the doctors said that probably we had seen the shakes from the high fever.  They told us if Janey ever appears to have a seizure again, to film it.  I must admit I wouldn't have thought of that, and kind of laughed to myself as I had written recently about not taking Janey's picture during bad times.  I'd see a possible seizure as about the worst time ever for picture taking, but obviously it would be for a medical reason!

So we were discharged, with the theory that Janey has some kind of virus.  She is still extremely, extremely sleepy, but the fever is gone.

I have to admit I still feel, at the back of my mind, that her shakes were not just regular shakes.  They were different.  But I was very clear with the doctors about what I saw and that I felt they were not fever shakes, and the doctors listened respectfully and were very confident she had not had a seizure.  I am not a doctor, and I respect their opinion.  But I am a mother, and I do still feel I have some questions.  However, even if she did have a seizure, having a seizure from a high fever is not unheard of, and I don't want her subjected to any major workup unless it happens again.

So...here we are.  I'm waiting for Janey to wake up and be more lively.  I hope she does soon.  I'm tired out of my mind, but overall, pleased with the care she got.  You could tell the doctors and staff at Mass General had training in autism.  It made a noticeable difference as compared to our last ER visit.

Thanks to all of you who made it this far for listening, and as always, for your support!

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.