Tuesday, July 28, 2015

When Your Child is Ill - Part Four

You can read part one HERE, part two HERE, and part three HERE.

So it was July 9 and we were going to be discharged.  Again.  

Prior to that we met with the ID team.  A follow up was set for Olivia to come back the next Friday when Macy had her next adoption clinic appointment.  We still had to meet with the neuro team and then we'd be ready to go.  They came by later in the afternoon.  I took notes.

So... because of her vaccine... Olivia first developed cellulitis (a skin infection).  We knew this obviously from her first stay in the hospital.  Additionally, from the MRI, the doctors found a lesion on her brain.  They THINK it's transient, meaning it will go away.  We will do another MRI in 2-5 months from now to see.  On top of that, as if that wasn't enough, Olivia also developed a condition known as POTS.  I had NEVER heard of this before.  But it's out there.  Google it.  Believe me, I have.  This is where all of her symptoms come into play. 

POTS stands for Postural Orthostatic Tachycardia Syndrome.  Two pages I've gotten a lot of useful information from are HERE and HERE if you want more information than what I'm going to share.  Basically with POTS, you get an elevated heart rate and pulse when standing at times, and Olivia had the drop in blood pressure as well.  This can cause dizziness, lightheadedness, chronic fatigue, nausea, "brain fog", headaches, confusion.  With any of those symptoms, Olivia needs to immediately sit (or better yet lay down) and try to get cool and calm.  Overheating can exacerbate a situation.  

Many in the age range of 12-15 develop POTS following a traumatic illness or injury.  For Olivia we were told it was due to the vaccine and/or the illness following.  There is no cure and many in this age range will grow out of this by their EARLY 20s.  EARLY 20s????!!!!

Management of POTS requires Olivia to really get to know her body and the signals she may be getting.  Upon being released from the hospital, she was to begin increasing her activity starting with just 5 minutes a day of walking and adding in 5 additional minutes each day as she could, until she reached 30 minutes of activity a day.  A Physical Therapist came to work with her the day I was home and gave her two sheets of exercises to do each day.  She needs to add salt and lots of electrolytes to her diet to help blood flow.  Instead of Gatorade with all the added sugar, she drinks a large cup of coconut water mixed with a little orange juice.

We are taking this day by day.  She has done very well.  Olivia does still have POTS, I think somewhere inside I wanted to believe it would just "go away."  I document everything and there have been a handful of days with some symptoms.  Grandma came a few days after she was released to help for a couple of weeks; she goes back today actually.  It's enabled me to take the other kids out a little bit as Olivia was still in recovery, to run some needed errands, and as Olivia has gotten stronger, to allow her to become more active knowing there is another adult here in case of emergency.

She is pretty much back to her normal activity at this time, almost three weeks later... BUT there are times she has a racing heartbeat and needs to lay down for a few minutes, or a headache, etc.  She carries a small Gatorade with her whenever she leaves the house in case she may need it as electrolytes will help regulate her again.  And she has to constantly be aware.  Even the slightest headache can't be blown off or ignored.

We have our first neuro follow up August 7 and then a second ID follow up on the 11th.  We meet with her school's Special Ed Director, counselor, and nurse the first week of her first year of high school to go over all of this with them and put a plan in place for school.  She will need access to electrolytes during the day.  She will need to be allowed to carry Gatorade and use it if needed.  She will need to be allowed to sit/lay down as needed in class or the nurse's office.  She will need to take health first semester not second and save PE for second when we hopefully have an even better handle on what she will be able to do.

All because of a vaccine. 

Though this is a hard new normal to grasp at times, we know we are incredibly lucky.  It could have been so much worse.  She could not even be here any longer.  She is.  It's manageable.  But it's still hard to think of the what-ifs, or what-could-have-beens.  Will she still be able to do track in the spring?  Will she be able to walk around Six Flags next summer?  Will... the questions could be endless but we need to take it step by step and day by day.

Thanks to God and my amazing friends and family we can do just that.  And we will.

Macy LOVES her Grandma!

Olivia's first outing since being discharged: the Farmer's Market.

Macy's first restaurant!

Monday, July 27, 2015

When Your Child is Ill - Part Three

You can read part one HERE and part two HERE if you haven't already.

The night of July 7 I finally was able to go home once we knew the "plan".  Braeden had left earlier in the day to go back to the friends he had stayed with before.  Liam and Macy were home with my friend who had been there since 1am.  Just amazing.  I can't thank her enough.

But Macy was stressed.  She was quite upset.  I think because I came home without Olivia and she was expecting us both, that when I came in alone she was not happy.  She didn't want me to hold her and was mad.  She was running a slight temp.  I drove Liam to his friend's to stay again and Macy and I came home to sleep.  I barely slept at all.  I vacillated between chills and sweats, and thought I was basically dying.  I tried calling different friends to get my mind off things, but nothing seemed to help.  I felt like I was falling apart.

The next morning I still was not feeling good at all.  Macy seemed a bit better but was still not real happy.  We got ready and left early to hopefully be in Olivia's room before the doctors began coming around.  We found out they hadn't done the EEG the night before as they hoped but that the tests would all be done today.  One of the child life specialists (AMAZING people - wonderful job!) came to see if Olivia (and us) wanted to come down to see some therapy dogs and also meet some of the White Sox Umps and the mascot Southpaw who were coming to visit.

Macy LOVED the play room.  However, mom didn't really think through the fact that she had never seen a character before.  This was the look she gave when he walked in...


She quickly warmed up to the umps though, they were SO incredibly nice!  And as long as Southpaw was nowhere near her she was fine.


The folks from the White Sox gave out Build a Bears and clothes to the kids so Olivia and Macy each got one.  Macy was ECSTATIC over the Spiderman outfit!  So funny!


Following that and the therapy dogs, Olivia was taken right to her MRI and then lumbar puncture.  I was still not feeling well and had decided that I would go home a while and see if I could rest some.  I couldn't but Macy did.  I was feeling so bad I thought I would probably stay home.  Olivia had messaged me saying she did the tests and was feeling much better.  My friend who had watched the kids yesterday and her husband went up to visit and keep Olivia company a while.  She texted me at how much BETTER Olivia was doing and that she looked so good compared to how she had been.  I felt so much better hearing those comforting words.

The next morning Macy and I went back and saw how great Olivia was.  Even better than she had been the first time we had been discharged.  Today we also heard about the results of her tests, and the TWO conditions that were present all due to her vaccine.  We were going to be discharged that day, in a much better place than before, but with information that would mean a new normal and figuring out how to manage our (her) day to day.  


When Your Child is Ill - Part Two

If you haven't read part one, you can read that HERE.

That night, July 6, was something I still can't get out of my mind.  Probably never will but hopefully some of the associated fear will abate as time passes.

I share this not to share personal info but to warn against what COULD happen.  This happened.  This is our story.  (Most of it anyway, minus some of the more personal information.)

Olivia came into the kitchen at 8:00pm to take her daily medicine while I was on the phone with a friend.  She wasn't "herself."  Just seemed confused.  When I suggested she "take her medicine and go lay down" she literally took her medicine out of the kitchen.  I had to remind her to take it as in swallow it.  And then go lay down.  She did and I walked out the front door to finish my phone call on the front steps.  Liam and Macy were already asleep and Braeden was in the basement.

I finished my call about 30 minutes later and went to check on Olivia.  I found her sprawled out on the floor of her room, the pillow pet and blanket that she was carrying laying by her.  I tried to talk to her, to wake her, but it was hard.  She finally awoke enough to sit up.  She had her eyes almost all the way closed, grabbed the back of her head and began screaming/crying that her head hurt, kept saying over and over she wanted to go home.  I told her she was home but she would cry and say that no, her home was far far away.  She really had no idea where she was or what was going on.  Shakingly I called 911 and got Braeden to come upstairs.  I tried calling a good friend who lives close by to see if she or someone in their family could come stay with the kids while I went to the ER with Olivia.  I couldn't get through twice and tried the friend I had just gotten off the phone with, who also didn't answer.  I had Braeden try my first friend again on our other phone as I was about to get kids up and ready to go with us.  He got through as my second friend began calling back on my phone.  I took the one from Braeden and spoke with my friend who assured me someone would come to stay with the kids.  Unbeknownst to me she was 45 min away with most of their family.  She sent her 18 year old son over while they left to come back home.  She also called a mutual friend to come to the hospital so I wouldn't be alone.  Things I will never forget or know how to repay.

The ambulance arrived and they were very nonchalant.  I don't think they thought much of a girl sitting up crying.  They left her to get a stretcher.  Then asked her to walk out to it in the living room.  Finally when I tried getting her up to walk I think they saw how out of it she was and they stepped in to help her there.  They got her strapped in as my friend's son arrived.  I finished packing my bag (since it was already put together from our other endeavors), left,  and actually beat the ambulance to the hospital.  On the way my other friend I hadn't gotten a hold of called again and I explained what was happening.  She and her daughter met us at the hospital.

In the ER the nurse and doctor did not take any of this seriously.  I had given the EMTs the discharge packet from our stay in Chicago.  When I arrived they talked to me about her having been in the hospital for headaches.  I explained once again that no, she was there due to a vaccine which turned to cellulitis and that they had thought something else was going on but didn't know what. 

By this time Olivia was at least answering questions and her eyes were open.  BUT she was not. at. all. Olivia.  Olivia has NO recollection of what transpired over the next 5-6 HOURS.  She doesn't remember coming to the kitchen for her medicine, falling in her room, talking to me, and vaguely remembers the ambulance ride.  She remembers nothing of her stay in our local hospital that night.  She was out. of. it.  She was acting as if she was drugged or drunk.  She was singing, a song she knew well but said she didn't, that she said she had heard Macy singing.  She was directing an invisible choir.  Was speaking loudly and saying things she would NEVER say in real life (like how the nurse was not nice - she wasn't - and needed to work somewhere else!).  My friends and I just kept looking at each other.  We were laughing because it was too scary to do anything else.

During this time the first friend I spoke to arrived back in town and also came to the hospital.  None of them could believe the change in Olivia.  If we didn't see it for ourselves, I never would've believed it.  I kept telling the staff that this was NOT her.  After finally getting the whole story and finally seeing her walk - still incredibly unsteady, they started taking things a little more seriously.  They did an EKG, took her for a CT scan, still nothing was found and we were told very quickly that they were transferring her back to Chicago.  The nurse told us this and at first it seemed like the Dr wasn't even going to talk to us but after asking questions about why we were being transferred, etc he finally came in.  They felt it was neurological and since she had just been there they felt Chicago was a better placement for diagnosis.  It's what we all thought was best, though I dreaded the drive and arrangements again, but the way it was all done and done so quickly without discussion was just not the way to handle things.  It was again related to Medicaid.

At 1 in the morning Olivia was transferred by ambulance back to Chicago.

I couldn't believe we were going back.

My first friend I had called had had her husband take over at my house with the sleeping kids while her son went home.  She then went and took over for him while I packed a bag and went to the hospital in Chicago.  She offered to stay at the house through that day if needed while we saw what was going on.  I was so conflicted.  It would be the first time Macy was not with me.  I knew they wouldn't allow her there overnight.  I had no choice.  I was being torn in two, but Macy knew this friend well and was comfortable with her.  The boys would be there at least part of the day.  It was the best of a bad situation.

When I arrived in Chicago, Olivia had already gotten there and had spoken with the doctor.  While she was more "with it" then she had been, she still was not herself.  The Dr told me that Olivia had shared that she had had headaches all day.  I had to again relay that she was not herself and had no idea what had happened.  I let them know that she had had NO headaches this day, that this had been her best day, and then launch into the whole story of what happened beginning at 8pm.  She could remember nothing after that time.

From the time I arrived at 2am until 6pm the next day, they did nothing but watch her.  We were working with three teams of doctors from the "regular" team, the infectious disease team (they still weren't sure if something was going on related to our time in Haiti), and the neurology team.  It wasn't until I asked late in the day for a plan that I was finally able to talk to the neurologist and find out where we go from here.  When I had spoken to the ID Drs earlier they were not on the same page as I was.  They still kept asking her things (she was still not herself and was speaking VERY slowly and not remembering things correctly) and asked if she took an extra dose of medicine, etc.  They were not on board for doing more invasive tests such as the undone lumbar puncture etc because they thought she was ok.  The neurologist didn't.  He agreed something was happening and wanted to get answers.  He was going to do an EEG, lumbar puncture, and MRI.  I was elated.  At last, hopefully, we would be getting somewhere.

When Your Child is Ill - Part One

June 30, 2015 things began changing our summer of attachment and family time.

Olivia, Braeden, Macy and I drove to Chicago for Olivia's regular check up.  Liam was in summer school and I had a sitter coming for the hour or so after school when we may not be home yet.  At Olivia's check up, all looked great as usual.  Her labs and numbers are always immaculate and she is almost always my healthiest kid.  During that check up they mentioned wanting to give her a pneumococcal vaccine.  They also mentioned the HPV vaccine and in my head I was reviewing some of the scary stories of reactions I've heard of from that vaccine.  They had decided to wait on the HPV vaccine due to a new one coming out which covered even more strains, and I breathed an inside sigh of relief that I wouldn't have to make that decision today.  A pneumococcal vaccine was nothing.  It was something many elderly and those with more risk get all. the. time.  It was safe.

Or so I thought.

Believe me when I say I've never been an "anti-vaccine" parent.  I've really never put a lot of thought into vaccines at all until recently as I've heard more and more in the news regarding scary, troubling stories.  But even then I didn't put much into it.  Maybe I should have.  Hindsight is a wonderful thing, right?  If only we could use our hindsight to go back and change some of our decisions, but alas it isn't so.

That night after having gotten the vaccine in her left arm, her arm was hurting.  That's normal, no big deal.

The next day her arm was even more sore and it was hard to move.  Olivia had no fever, no redness, no swelling so I still wasn't worried.  By that evening the pain was worse, she could barely move her arm without flinching, and she was running a slight temp.  I had emailed her Dr from Chicago who amazingly was responding quickly.  She told me what to watch for and that if the fever continued I should probably take her to the ER to be checked out for a skin infection.  It continued.  We went to the ER.  

The Dr sent us home.  She talked about understanding our caution and let us know that what she saw raised no concerns at this time: there was no swelling, no real fever, no redness, and her lymph nodes were ok.  BUT she was careful to point out that if any of these changed, if she had a fever over 102, if there was redness, OR if there was swelling, to PLEASE COME BACK.

Olivia went to bed after returning home.  At 6:30am on July 2, I went to check on her.   She was running a fever of 103, her arm was swollen and the area red.  Great.  Back to the ER we went.  THIS time however we had a Dr who was not so conscientious.  Who looked at us as a "medicaid family".  (Olivia is on medicaid since being adopted through foster care.  If you don't know what that means to SOME medical professionals, be glad, be very very glad.  I guarantee if she was on my insurance the next few hours would have gone COMPLETELY differently.)  This Dr basically told us over and over that they would run some tests (I had still been emailing with her Dr in Chicago and told them to contact her and she had asked them to run some tests) but that he felt this was a "normal reaction."  He kept reminding me that when kids get a shot it's normal to run a temp or have redness or have swelling.  She was given Tylenol and her fever came down to 100.  She was still in lots of pain and the nurses had mentioned about possibly getting her some Motrin as well.  But it never came.  Tests were coming back negative, and the doctor was talking about releasing us.  Olivia's temp began rising again and was 101.  The nurses again mentioned getting her some Motrin, but came back saying that we were going to be released and the Dr said we could give Motrin at home due to costs.  He had also mentioned costs related to her being there longer versus being released.  Oh yes.  It's all about costs.  So we went home and I gave her Motrin.  

The Tylenol was still in effect, and within the hour her fever was back up to 103 on both meds.  

After more emails with her Dr in Chicago, we decided it was best to bring her to the ER there in Chicago.  So I got a place for Braeden to go, a friend was going to come over when Liam returned from summer school and keep him, and the girls and I were on our way to Chicago.

Even though she was in pain, she was still able to be silly with her sister...

After some amazing nurse and doctor visits, more tests, IV fluids, pain meds including morphine, and me trying to find a place to park where I wouldn't be towed, Olivia was admitted to the hospital.  Not long after I came home, knowing she was in great care, to pick up Liam, bring clothes to Braeden who was going to stay with good friends, and spend the night at home with Liam, Macy, and the pets.

The next morning, July 3, I dropped Liam off with friends he was going to stay with (I have the BEST friends!), and Macy and I were off to the hospital.


After running many tests it was determined that she had cellulitis in her arm.  They also thought "something" else was going on, possibly a virus, but they weren't sure.  They ran a LOT of different tests but nothing was coming up except the cellulitis.  They discussed a possible lumbar puncture but ended up not doing that.  Olivia was still having fevers, horrible headaches, was having trouble walking (which I chalked up to being in bed), and could barely move her arm at all still.

Friends stopped up to visit which was a great break.  Even though we were really there such a short time, it felt like an eternity. :)


I went home again that night, and back the next morning, July 4.



That day the Drs discussed that she would be allowed to go home today.  Her fevers were finally under control.  She was on antibiotics that were working for her arm.  (At one point they changed to a stronger antibiotic but she began itching everywhere as a side effect so they went back to the first one.)  And her pain seemed to be manageable on the Norco she was going home with for pain. 

We. Were. Outta. There.


The rest of the day July 4 was ok.  Still having some headaches, still had trouble walking, but no fever and Olivia was glad to be home.  July 5 was still iffy.  No fever but headaches, trouble walking, not eating much, pretty much in bed except to use the bathroom.  Then came July 6 and we were on the road to recovery. 

The kids and I got outside to play with some friends who came over. Olivia had NO headaches, NO fevers, and was eating normally again finally.  She was still very unsteady while walking, but again I chalked it up to being in bed for a few days.

I. Was. Wrong.
 

Little Did I Know | Template By Rockaboo Designs | 2012