Friday, November 28, 2014

Why I Forgot the Box Was There

I am going to put pictures of dogs I have crocheted in between the paragraphs to break them up.    :)

Now, I am getting ahead of myself here because many, many things happened before the box was ultimately opened.   It all started back in May...

My Mom and Aunt went back to Missouri to close up her house.   Yep, Aunt Janice finally had enough of Misery's winters and wet summers.   It took them some time of course, they had to pack up over 40 years worth of knick knacks, memories and cookie sheets.   In our case, it also meant 40 years worth of foam cups, paper plates, Ziploc baggies and even wax paper.   By the time we started unpacking some of the boxes, we found that the people packing decided "pack the house" meant Pack the Whole House.    The wax paper was dated 1993 btw, the year I graduated high school!   But yet again, I am getting ahead of myself.

Mom took only two and a half days to drive home from Missouri.   My aunt had gotten sick early in the trip but refused to go to the doctor.   It also turned out she was using her oxygen incorrectly, and ended up causing lung damage.   She had her machine on pulse but if you don't have the strength to start the pulse, it doesn't happen   She needed it on continuous.     Anyway, by the time they left to head back to California, my aunt was very sick.   Mom tried a few times to pull into a hospital and my aunt would refuse to get out.   By the time they hit the door, my Dad was more carrying my aunt into the house than helping her. 

They did get home in time for TJ's birthday on June 19th.   My aunt never seemed to get any better, her oxygen needs were increasing by the day.   Her color was grey and the only movement she made was from her room to her chair, to the bathroom and then back to her room for bed at night.   One month after they arrived home we finally got her to the doctor and he put her in the hospital that day.   She had double pneumonia and congestive heart failure.  

In between all this we had TJ with a mysterious high pulse that we were still told was just stress.   If I hadn't been so concerned about my aunt, I probably would have thought of SVT much sooner.   But that's one of those hindsight things.   He was pretty much always nauseous and always tired.   But at the time we were distracted with my aunt.   Somewhere in all this chaos a box arrived from TJ's online school.   We had changed him from the school he had attended since 7th grade but they had a lot more choices for him.   Most importantly they had a Game Design class.       LOL      So anyway, there is our box from the title.   Now I had already changed around his classes, trying to make things a little less stressful for him since last year was such a disaster.   So I didn't worry about the box, it had his history book and a book for a class he had dropped.  So the box sat.

Fast forward to my aunt starting to feel a little better, but still in the hospital.   Now her doctor is starting to talk to us about putting her in rehab for strengthening.   She had gotten really weak with this illness.   TJ attends his first Cardio appointment somewhere in there and we all know how THAT ended!    So now I have TJ AND my aunt in the hospital.   The day he had his first ablation my aunt moved to rehab.   Things seem to be going better, his pulse is down and she's doing better if they are talking about rehabilitation.   Meanwhile, the box sat.

My aunt continued to slip in and out of congestive heart failure, they just couldn't seem to keep the fluid off.   I was beginning to get the idea that that was not going to change.   I felt her body must have gotten to the point that it no longer could get the fluid off easily and this would keep happening. Mom hoped I was wrong but it wasn't long before she was agreeing with me.   Meanwhile TJ's pulse is better but two weeks after he was released from the hospital it started heading up again.   With the ablation it couldn't reach as high as it was but he was in the 120's and his heart was once again out of rhythm.    The box waited.

My aunt started a rapid downhill slide on us and for a few days we were more worried about that.   TJ wasn't forgotten, just postponed a bit.   She was in the ICU for two days, the DOU for two days and a regular room for one day.   She wasn't stepped down from improvement, it was because she had signed a DNR.   She had developed pulmonary hypertension and they just never could get that lung pressure down.  The next step would have been intubation and she wasn't going for that.   They said with all the damage to her lungs, she would never had gotten off the vent if she had started, so I couldn't blame her.     Halfway through her first day in a regular room, she was gone.    At home, the box was moved out of the way as everyone came back home without her for the final time.

It was not the resolution we wanted, but it was out of our hands.   As harsh as it sounds, we had to push aside the grief and concentrate on the living.   TJ was starting to feel nauseous again with his pulse doing a yo-yo.  Arrangements were made for a second ablation and the waiting game began.  He was put on Metoprolol as a stop gap and it actually did give him a month before it stopped working as well.   As one of my friends', a nurse put it, "His heart wants to go fast and it found a way."   And still there was the box.

He was admitted on Oct 1st for the second ablation and it was a resounding failure, just like the first.  His electrophysiologist told me that he would zap one spot and it would actually move to another.   He is normally a man with few expressions but I saw definite consternation that day.    He told me he was trying another medication but that it was very strong and he needed to stay for the 48 hours it took to load.   That way he would be monitored if it had a bad effect.   That is when he started the Sotolol and its been great.   He hasn't had any of the potential side effects and his pulse stays in the 90's.   More importantly, his heart is in rhythm.  It took time for the stress of that to slow down.   The box is still in the entry.

We are now at Thanksgiving and the poor kid is always behind on schoolwork now.   My once healthy kid seems to have lost his immune system at Loma Linda!   Everything that comes around, he gets.   Additionally, I decided the bunnies deserved a treat and bought them some Timothy Hay for the first time in years.   Idiot mother forgot WHY I stopped buying it!   We are all terribly allergic and the bunnies are in the school room.   So the poor kid was miserable for the month it was in their bunny boxes.   I couldn't figure out why he was so sick.    I finally got a clue and ordered the Orchard Grass, boom, he is feeling much better rather quickly.   I felt really really stupid, let me tell you.   He still gets every virus that comes around but at least its not his allergies acting up.    Dad asks me what the box is at some point and I tell him books for his school that he doesn't really need, don't worry about it.        Yeah, another blunder there.

So why do I keep talking about this stupid box??       I am sure everyone is ready to scream, "Shut up about the damn box!"  Patience, its actually relevant!   Read over all we have been through since the box.   Note that I am sure I have forgotten some things as well.   Now sit down with your son to help him with his English assignments and read where it says: Read pages 71-80 of The Night Thoreau Spent In Jail.   Frantically click all over, looking for a link to said material.   Go back and figure out that this particular lesson started in the beginning of November and its all connected.   Remember the box.   Finally remove the tape and remove the big History book on top.   Note there are two paperback books under this book.   Hit yourself in the forehead repeatedly when one of them is: THE NIGHT THOREAU SPENT IN JAIL!!!!       Try to get your autistic son to explain why he never told you that he was having to google information on this play to answer questions.   Scream inside your head because you would never scream at him, no matter how much you want to.   Sigh loudly and explain to your son why you are now going to have to start this lesson from the beginning instead of just continuing where you are.    Laugh because you have cried too much in the past few months and in the grand scheme of things, it really is funny.

Thursday, July 24, 2014

Adenosine NOW!

Okay, for people that don't follow MWOP, that title doesn't make much sense.   But its actually a tongue in cheek joke for those folks.  I am going to do my best to detail the events of July 15  to July 23rd.   If I get too detailed, I'm sorry, I am doing this for my benefit just as much as for people wondering.

For several months now TJ has been extra anxious, even for him.  He's also been severely depressed at times and became very overwhelmed with school.  He was so agitated that I made an appointment with his Pediatrician for April 22nd.   At that appointment his pulse read at 196.   The nurse was so shocked that she left the pulse ox on his finger for awhile to make sure it wasn't a malfunction.  By the time we left that appointment it was 180.   That figure will become significant later in our story.  His doctor said he was just really stressed right now and he wasn't going to give him any medication.  However, his pulse was a little (!) high and he took him out of school for the rest of the year to relax. 

Mom and Aunt Janice went to Missouri and TJ wasn't getting any better.   His heart rate was still high and would average about 140-150 at rest.   We didn't take it all the time but we were keeping track.  His doctor did say to do that at least.   Fast forward to July 7th and we take him back to his Pediatrician.   His pulse rate has never come down and he's been nearly suicidally depressed.  This time his doctor said that (maybe) he should see a Cardiologist since it hadn't gone down in two months.   So on July 15th (that is sooooooo fast considering we had to go through insurance) he had a appt with a Cardiologist at 4:15 pm.  

We got back there with him, they did the pulse ox thing and an EKG.   The only reason I know what his pulse was is because the doctor came in highly agitated that a healthy sixteen year old at rest was 180.   He said something about his P waves were completely missing on the EKG and he could not even begin to deal with this situation.  Now remember, three months ago he was at 196 and nobody batted an eye.   Now he's the 180 he ended that original appt with and this guy is hitting the roof.   We were sent directly to the hospital, which was right across the street.   By the time we got there and they took his rate it was 192.   Things moved rather quickly after that.  

The first thing they tried was a 6, 12 and 12 of adenosine.   That brought it down to 180 but it wouldn't budge below that.  The poor kid was electrocardioverted and that finally broke it.  For those not in the know, they actually used CPR paddles on him to "reboot" his heart.   He was given versed first and they said he probably wouldn't remember the experience.   Yeah, well, that didn't happen.  You never ever want to see your son's legs flop up and down as they shock him with paddles.   Luckily, my Dad had pulled me aside so that's all I saw at the time.   TJ still has the burn mark pattern on his chest.  

They put him on oxygen to help with his heart and we waited in the ER for a few hours.   Three hours later it shot back up and this time adenosine worked.   Now we were officially admitted.   The hospital my son was in is really an adult hospital.   He was literally the baby of the cardiac floor.  Its a good thing he's such a level headed kid because otherwise he would have been rotten!   He was terrified so I stayed with him, sleeping in a hard backed chair.   Not that I got much sleep.   While there they did another EKG (yay, the P waves were back) and an electrocardiogram.   The whole time he was on oxygen.   The situation was just surreal.  

They put him on a medication but he continued to go into SVT.  On Thursday night I took his oxygen off for him to eat dinner (it made his nose run and drove him nuts) and he did it again.  That night it was decided that he should be transferred to Loma Linda Children's Hospital for better monitoring.  The next morning I was told the ambulance was on the way and he would be in the Cardiac ICU just in case.   He went into SVT three times in the ambulance but he was always coherent and able to tell everyone just how he was feeling.  

We got to LL and they got him settled in bed.  He was in and out of SVT constantly.   They wanted him to do it so they could get it for their tests and it wasn't hard.   Just the guy coming in to draw blood set it off.   Then I could hear all these cardiologists all discussing how his rhythm was all over the place.   Its not a good thing to stump the people trying to help you.  Finally, I was allowed to come back in and was hooked up to everything under the sun.  Now I didn't have to wait for vitals to see if he was in SVT, he was on a monitor.   The next day they started him on the same medication that he had at the other hospital in a larger dose.   For two days we had peace.   My nerves were shot from constantly hearing his alarm go off, his nerves were shot from waiting for it to go off.  

I had been home once in all this time for a brief 6 hour stay.   The rest of the time I was with him.   I did go down to the cafeteria of course but I never went home.  On the third day he got up to go the bathroom and went into SVT again.   You could have heard the sigh from wherever you live.  It was literally to the point that we both would tell the monitor to just shut up.  Yeah, it didn't scare us anymore, it was just plain annoying and we both wanted to go home!   Later that day he again went into SVT and it was obvious that the medicine was not going to work.  He took the meds twice a day so he missed the next two doses.   SVT episodes were coming often and lasting a little long.   Finally, a little before his ablation they ended up with adenosine again since he was at 214 without breaking.

I can't tell you much about his ablation since I wasn't there but I can tell you that he fully remembers it and it was not a problem getting him into SVT in order to find the pathway causing it.  He said he heard the machine go off four times that burned different areas in his heart.  He felt the tubes going through his body and can tell you what happened if you want to ask.   Where he messed up is refusing pain meds in recovery, thinking he could get by on Tylenol.  He didn't realize that pain meds were already working for him and they would wear off.  He was nearly crying by the time they gave him some Tramadol and it kicked in.

The good news is the ablation broke the SVT but the bad news is that his particular kind usually comes back.  His resting heart rate is still 110 or thereabouts and it shoots to 160 when he walks.  He's supposed to exercise for short amounts of time and let us know if he has any problems with his heart rate.   He's so in tune with his body now that he can tell you fairly closely what his rate is.   He has had three bouts of SVT since the ablation but they break in a second.  For those that are in the know, his SVT starts with an H and ends with a T.   I have forgotten the middle letter!  

We got home yesterday and things are pretty much back to normal here.  I've done some laundry, dishes, etc.   TJ said his heart rate was up earlier and got us all panicking but it broke.  He said he's felt it race a few times, it just always stops within about a second.  So here is praying that it stays that way and even goes down some.  When your resting heart rate is already a bit high, it has less distance to go up.  The doctor that did his ablation is not totally confident that this will stick, that's never a good thing to hear.   All we can do is go day by day, but I really appreciate everyone that prayed and/or sent good thoughts.

TJ's firsts for this: First heart medication, first IV, first shock, first hospital stay, first ICU stay, first heart monitoring, first electrocardiogram, first chest x-ray, first ablation, first time using a urinal, first oxygen use-  I may be missing some firsts but these are things I would rather forget.

I regret to inform those of you with MWOP that I do not have pictures of my child being shocked, on oxygen or receiving the adenosine.   You will just have to use your imagination.

Monday, July 7, 2014

Dr. D is NOT Impressed

TJ finally had his long awaited appointment with the doctor today.  First of all, despite what Mom thinks, he did not grow while they were in Missouri.  LOL        He's still a respectable 5'8", and growing.  I didn't ask about his weight but they said he was fine.   The nurse did the pulse ox and got a 180, she was not impressed.   She gave it five minutes and it was still 180.   Did I mention the nurse was not impressed?   The doctor came in and we talked to him about the depression, stomach problems, headaches and high pulse rate.  He gave us the good/bad news that his heart problems could be the cause of all of these.  Yes, even the depression to some degree.   He did put him on a lower than the lowest dose of a anti-depressant.   The lowest dose is 20 and he put him on 10.   He is referring him to a cardiologist and I pick up the referral tomorrow afternoon.   Normally referrals go through the insurance and then they are mailed to the house.   They are not wasting any time here.  I have been concerned about his pulse rate but happy when it was as low as 106.  I was informed today that is not acceptable for a teenager at rest.   He swings anywhere from 130's to 180's and that's just not going to work.   The only thing here is I was supposed to get him exercise and now I am glad I didn't get out.  His pulse has been doing this since at least April 22nd (that's his first appt where they took the pulse) and that's too long.   I just cringe though thinking of how high its been and if I had taken him to go swim.   Would I have been calling 911 from the gym?   Would my kid have had a stroke or heart attack at 16?   I don't know, but I am glad I didn't find out the hard way.  I will keep everyone informed on what's going on with him as I get information myself. 

Monday, June 30, 2014

Where Do I Start?

Okay, I have had so many requests for a new post that I finally decided to stop procrastinating and type already.  There has just been so much going on that I didn't know where to start or end!  First of all, I have gained back the weight I lost except about five pounds.  I had all the excuses in the world about not going to the gym and that's the result.   I am not happy with myself so I am going to start working on that again.  I do have good news though, I have taken a shower either every day or every other day for a month straight now.  Those of you that follow me know that this is big.  I'm still not alone in the shower but I have started having these nasty hot flashes during the evening where I just feel sick.  So I started doing better about showers as a result.   I guess it doesn't matter why as long as I am doing it.  I am going to try going back in time to when all the busy part of my life started and see if I can detail it coherently.  In between I'll post some recent pics of TJ and some crochet.  So get some popcorn and a comfy seat.

It all started about late April, although there were signs before that.  TJ has been complaining this year about being overwhelmed with school and there were some meltdowns.  He really hasn't had meltdowns in a long time.  The headaches and stomach aches he had at regular school were back.  I kept messaging his teachers, telling them that he was feeling overworked and stressed.  They just pointed to his grades (all A's) and said he would be fine.   Gee, I'm so glad they know my son better than I do.  We were spending 12 hours a day or more working on school work-weekends included.  In fact, it got to be that a free weekend was a rarity.  I was having more trouble getting him to cooperate with me.  In addition, my mom and aunt were gearing up to go to Missouri.  My aunt finally decided it was time for her to sell her house and move to California for good.  All of us were worried since neither one was in any shape to make the trip!

Finally, TJ told me he was depressed and feeling overwhelmed.  I made an appointment with his doctor.  Unfortunately, severe depression runs in our family.   The teachers were still not listening to me and I was really getting frustrated.  The nurse did the usual pre-checks and everything was normal-no temperature, good height/weight.  Then she took his blood pressure and asked him he if was nervous.  I guess it was a little on the high side.   So she put one of those finger pulse-ox's on him and we all watched, appalled as it read 196.   Even for nerves in a 15 year old, that was unreal!  She thought it was an error and did it again.  Now it was 180 something.   She left it on him for about 10 minutes and it was down to 176 by the time the doctor came in.  Needless to say, his doctor was not impressed.  At the appointment his doctor said he didn't want to put him on meds, he wanted him to try learning how to relax and exercise.  That was for the depression and overwhelmed feeling.  He figured for now that the pulse reflected how TJ felt.   In other words, the kid was in major turmoil and his pulse rate was the window to that.

His doctor took him out of school for the year at that point, giving me a note.  It was early May, so not too bad.  We really didn't care if he had to repeat 10th grade at that point.  I was to keep track of his pulse and blood pressure for awhile, we were still hoping it was just stress.  My mom and aunt toyed with taking him with them to Missouri but as an Aspie, he really doesn't do well out of his comfort zone.  And of course he was worried about his Peanut.   :) 

Ultimately, we decided that taking him to Missouri in the middle of a permanent move was not the best idea.  My aunt had been in her house for 40 some years, there was a lot to do.  Dad and I let him play video games and relax.   The dogs encouraged him to run with them in the backyard.  His pulse stayed high for over a month.  It was less high, but still high.  He was worried about my mom, worried about my aunt and he had so many thoughts running through his head.  His dad is in a bad bipolar episode and he started worrying that he was bipolar too.  Some of these things he talked to us about, some we found out later.   He was just so high strung still, but we just kept thinking that he didn't get that way overnight.  We figured time was the answer.

Well, time went by and my mom and aunt arrived back in California.   My aunt had gone nutso in Missouri-eating as much salt and cholesterol as she could manage.  As a result, she got here with congestive heart failure.   So add that to TJ's worries.   A couple of weeks went by where everything seemed to be getting back to normal.  He didn't mention being overwhelmed or stressed and his pulse rate was nearly normal.  We all breathed a sigh of relief and life went on.

Well, yeah, I wish.  One day he told me he was depressed and couldn't think straight.  Then the next day he was severely nauseous.   He never could throw up, he was stuck in that state for five days.  On the third day he told me he was so depressed he was thinking of suicide.  My heart sank.  If it wasn't for the fact that he is autistic, we would have put him in a hospital.  Trust me, a bunch of strangers in a strange building was not going to improve his thoughts.  Luckily, he didn't have a plan, it was just a general feeling that he would better off dead.  Not great but it could have been worse.   He's bright, he started looking up symptoms online and figured out he was severely depressed.  He even talked about things like the loss of interest in things you previously loved.  It was pretty impressive for 16.  Yes, he also turned 16 during this time.  I do have a doctor's appointment for him on July 7th and will update from that.   I think the meds are necessary but we will be very careful.

He woke up the fourth day not nauseous for about two hours and then spent the day in bed again.  The fifth day he was nauseous and Mom talked him into eating some bread and his stomach settled.  In the meantime, my uncle had sent him a $25 e-gift certificate for AMC theater.  After his stomach settled on the fifth day, I asked him about seeing a movie with my Dad.   There was a spark in his eye!  I asked him if he wanted to see Transformers or How to Drain Your Tragon.  The second was actually an accident, my tongue getting away from me.   But he smiled!  We said it a few times during the day just to see if he would smile again.

I am happy to say that today, TJ and Papa went to go see How to Train Your Dragon 2 and then had lunch together at McDonalds.  He was dancing in place while Papa got tickets and I even saw a few arm flaps.  When we picked them up this evening, pretty much all he did is groan.  But then I would too if I had eaten 3/4 of a big bucket of popcorn, candy, a large soda and a Big Mac!   I would say his stomach is better.  LOL    He had a lot of fun and my Dad said he laughed a lot during the movie.  I wish I had heard it.   We still keep a close eye on him and I am well aware that depression has ups and downs, but for now, we have him back.  I am sorry it took me so long to update on all this.  He's still worried about my aunt and his Dad, but they are not consuming his thoughts right now.

I have been crocheting a lot but not lately.   I am trying to make some crochet dogs for a rescue auction and have been having trouble with my wrists and hands.  I am going stir crazy not crocheting though and will probably just take some Motrin and deal. Next time I will complain about my parents' still smoking.    :P   Love you, Mom!

Thursday, February 27, 2014

What's On The Hook II

You can tell what it is now but its not done yet.   I still have the sleeves and the button band at the back.   This will have bloomers and a bonnet by the time I am done.   I haven't decided what decorations will go on it but am leaning towards a chick.  :)

Close up of pattern-the darker yellow is the real color


Thursday, February 20, 2014

What's On The Hook?

I thought I would try something fun for my next blog post.   I started a new project and each time I break for the night or for whatever reason, I will take a new picture of my progress.  I am not going to give you a picture of the pattern up front, you will just have to watch it form.  I started this one last night and have my first pictures to share.   :)

My yarn, hooks and progress

I am using an E and an F hook, although this pattern actually calls for a C and D.

I have two colors of Bernat baby sport weight yarn (#3)

This is my progress from last night.       :)