The plague has a name

Adenovirus.  That’s the name of the plague on my house.  That’s a new one to us!  Apparently it’s what Luke had (super high fever, sinus infection, tonsillitis, etc.).  It’s what caused the rash on Sam’s face and his cough.  It’s what is giving Kaley a high fever and horrible headache.  And now it’s what’s landed us in the hospital with Manny (high fever, respiratory and GI complications). 

Here is a link sharing a bit more about the virus if you’re interested.  http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/infectious/adenov.html 

And now what we don’t know … you know how Manny’s been sick for basically 2 weeks after his adenoid surgery?  That might have been part of it.  Or maybe not.  But we know the fever started 2 days ago.  So not sure if we have hit the worst of it or if there’s more complications to come for him.  Last time he got something icky like this, he ended up in the ICU on bipap and talking vent.  Really, really hoping we’ve already hit bottom with this. 

 

This picture is so cool.  One of the nurses here thought it would be cool if Manny has his own Hospital ID badge.  Child Life made him one and delivered it today.  It is soooo neat! It looks so real she had to clear it with security and put, “This badge is intended for play” on it.  It’s such a great gift for him because he is always noticing the badges and cool things they put on it.  And he pulls the string and loves to watch it pop back.  Now we can collect cool things to add to it. 

Next … my tooth.  I don’t talk about it much but the tooth right behind the pointy one on the right upper has been a pain for a loooong time.  Numerous years ago it was in much pain.  I went to the dentist to have it looked at and they said it was bad and that I must have been in much pain.  I was.  They told me the amount it would cost to fix and quite frankly, I didn’t have it.  I had about half and could get the other half by the next week.  I’d already had thousands of dollars of work done by this dentist so I asked for some leeway, compassion or something.  I asked if he would take something as collateral or whatever but just get me out of pain.  He refused.  I remember sitting in the van crying in disbelief and pain. 

I ignored it.  Eventually the tooth died so it stopped hurting.  Slowly it started to chip and break away.  I babied it like crazy.  Then it fell apart completely.  When?  During the month Manny was in the hospital in septic shock over Christmas 2011.  I was fighting for my son’s life so a stupid tooth seemed such a silly thing to worry about.  But it was embarrassing.  So very close to the front, you can see it when I smile or talk. 

Over the past year and a half or so, I’ve worked on getting that tooth replaced.  By now, however, it’s much more trouble than when it first happened.  I needed a bone graft (very painful), sinus augmentation (also not pleasant) and the implant.  During the interim, there is a fake cover type tooth just sticking in there basically hanging by a thread.  The next to the last step was to put the silver implant in and I had that done and covered with a temporary tooth.  I’ve already paid for the final tooth and it’s been sitting in the dental office for about a month now.  They keep calling to see when I can get it placed. 

Today?  The stupid temporary one cracked and fell apart.  Ugh.  So now I have this hill billy look again every time I talk or smile.  Posting a picture about it just so you can see how hideous it is!  I’ll eventually get in to the dentist to get the last step but for now, I’ll just have to talk and smile less. 

On a cute note … Manny has just this week started to ask this question, “Mama, Are you my favorite friend?” And when I say YES he says, “You’re my favorite friend.”  Oh be still my heart. 

Finally, I don’t normally post stuff like this.  Feel free to watch it or not.  But it’s a father’s perspective on a child’s illness.  Very moving to me.   So heart felt.  (9 minutes long). 

http://www.upworthy.com/a-comedian-silences-a-room-for-9-minutes-its-not-an-awkward-silence?c=ufb1

 

The circle that never ends ... admitted

I ran across an article today and I felt it so enlightening I had to share it with all of you.  Hope you enjoy it too.  This isn’t just about Manny … it’s about any time any of us deal with people who are hurting in any way (which is OFTEN).  I don’t know if this is 100% foolproof, but it sure makes sense to me!

http://www.latimes.com/news/opinion/commentary/la-oe-0407-silk-ring-theory-20130407,0,2074046.story

Now … with that in mind … Updates:  I wrote about how Luke has been sick.  Today (Monday, April 08), I took him to the pediatrician and she agrees that he is ready to go back to school tomorrow.  He’ll be tired and need to take it easy still but he’s good to go. 

Sam’s rash isn’t any better but not worse either. 

Jacob and Zoe are still fine. 

Kaley is burning up with fever, sore throat and horrible headache. 

Manny is in the hospital.  His fever was 103 and that’s just not OK for a kid with a central line and respiratory complications. 

I actually cried.  Probably partly due to the stress of the situation.  But mostly out of Mama guilt.  When a kid is sick, he/she needs to be with his/her Mama!  Today I had to leave Kaley at home struggling while I   am at the hospital with Manny.  I can’t stand it! We have it all set up for Kaley to be ready to go with foods she can eat, juices, medicines, etc.  But still … sometimes you just need your Mom to hold you and wipe your face with a cool rag, to wait on you hand and foot. 

I’m sure she understands why I have to choose what I did … but still.  I wonder if there’s not some small part of my kids that believes I love Manny more than I love them.  They’ve never given me any indication of that … but it’s my concern.  They understand.  But it still hurts. 

So what landed us here this time?  At 3am, when I was repositioning him, I noticed his heart rate was sky high and then when I touched him he was burning up with fever.  By morning it was no better.  So I called for a room. 

His fever has gone up since being here.  And even on Tylenol, it’s still 100 plus.  Poor dude. 

Tuesday, April 09 …

The night was a predictable kind of hospital night.  Lots of beeps, interruptions, wake ups and not much sleep.  We had a tech that knew us well and she came in for every 2 hour temp checks, even if he hadn’t run a temp over the past 2 hours.  We caught a couple of fevers on their way up that way.  (It’s harder for his to come down if it gets out of control.)  His heart rate was very fast all night.  But pretty much an uneventful night. 

The Nurse Practitioner for the GI came in at 5:30am asking, “Have you ever tried feeds?”  Let’s say … it’s not so easy being asked such a dumb question in the middle of the night.  I mean seriously?  How does a person go straight to TPN?  Was she really asking if in his almost 4 years of life if we have EVER EVER tried to feed him?  And what doctor would have just allowed him to go from birth to TPN and never even trial coming off?  I wanted to say, “Uh, NO!  We never thought of feeding him.  Think it would work? Bring me a hamburger and I’ll try it!”  But I refrained. 

Instead, I said yes.  He has a long history of failed trial feeds.  The last one? She asked.  February.  I told her how he failed even water.  She said, “Oh Pedialyte?”  To which I said, “No, WATER.  We trialed formula.  It didn’t work so we trialed several others. Then we thought maybe it was a component of formula so we trialed Pedialyte. When that didn’t work, we tried WATER.  THAT didn’t work.”  Her response, “Oh.” 

She asked what happens and I tell her, “5 ccs of water went in over an hour and 100 came out via the gtube.”  She says, “So reverse motility.” (Like it was a simple thing.) And I again repeat, but with more emphasis …” FIVE ccs go in and ONE HUNDRED come out.” 

I then asked her if she knew why his potassium and sodium would be low.  She started saying something about how different labs use different values as their normal range.  Now, what in my question implies that?  I had to stop her mid-sentence.  I told her that I’m OCD about his labs and he usually has low potassium but never has low sodium.  I could tell … she didn’t know.  So I let her off the hook. 

So she leaves saying, “I guess we wont’ change anything.” To which I say, “Great.  Thanks.”  I mean seriously? (sigh)

Are all GIs just used to dealing with idiots? That’s how it feels. 

Back to sleep. 

7am … there’s LOUD knocking on the door.  Repeatedly.  I’m not about to yell, “Come in” as it will wake him up for no reason.  It’s the Respiratory Therapist.  He gets this so often that he’s learned to sleep through the treatment.  And there’s no reason for him to participate.  But she flips on the light above his head and starts to wake him up in a rough way.  He starts to fuss a bit like, “Leave me alone” kind of light fussing.  She then says she is going to do his breathing treatment but the way she said it, he thought she was going to do the dreaded Choo Choo Train.  He started crying and saying NOOOO.  And then she fussed at him.  She went right in his face and started rubbing his hair roughly (with gloves on so it wasn’t comforting, it hurt).  And she was telling him things you wouldn’t tell a 17 year old about bucking up!  By this time I had enough so I said, “If you just start the treatment, he’ll stop crying. He’ll probably even go back to sleep.  He usually sleeps through his treatments.” 

Then she took her slow sweet time getting the medicines set up.  Probably about 4-5 minutes.  The whole time he was screaming.  I could have probably stopped him but I felt it was good feedback for her.  Eventually she put his mask on and he immediately shut up like a light switch.  It was crazy funny to me.  And he dozed off. 

If only someone could have predicted that.  (Eyerolls)

Do people just forget that small people are still PEOPLE?  I’ve noticed that people would NEVER do certain behaviors with adults but think nothing of doing it to children.  Well, I take that back, those same people would also likely mistreat the elderly too. 

How ironic.  The people that need the most protection … the young, the old and the disabled, are the most mistreated often.  That’s just not right. 

Meanwhile … his labs are pretty much what I’d expect with him sick.  I keep a spreadsheet of all of his labs and this is about what we should see when sick with a viral infection (which is what I expect it is).  But the strange part is … his sodium and potassium are low.  The low potassium is expected.  The sodium is not.  Kidneys??  Fluke?  So strange. 

10am, the Palliative Care doctor visited.  I told him of a few of my issues with some doctors (NONE of the above list of complaint met the list of things to tell him by the way).  It’s process issues like … he needs iron.  How do I get it?  Shouldn’t be this hard.  Yet it is.  Again.

10:15 temp still.  Due for Tylenol.  We administer it.  It’s 17 ccs of liquid. (1.1 Tablespoons) and he starts retching violently.  His stomach has to be drained.  He has to be suctioned.  Just to breathe.  Crazy huh?  Guess we need to move to Tylenol suppositories.

Now we sit and wait for his fever to go down, his viral respiratory panel to come back showing what he has and for his blood cultures to come back (hopefully negative). 

 

 

Day in the life ... NOT

March 28, 2013

One of the most difficult times of being a mother is when we are 99% sure we’re right.  You see, when I’m 100% convinced, I’m a bulldog (yet try to stay calm and kind).  But when there is that doubt, however slight, it nags on my psyche in a detrimental way. 

Manny said, "Mom, it's raining.  I have an umbrella!"

What am I talking about?  Remember back when Manny was in the hospital in August with Human Metapneumo Virus?  Well, it was by far the worst he’d ever been sick with respiratory issues.  His heart rate through the roof, his breathing rate through the roof, etc.  I knew with 99% certainty that he was in trouble, needed to be on bipap and put in the ICU.  But I couldn’t convince anyone else of that.  My regular peeps were gone and so no one was there that knew to trust my rather accurate “gut”.  Even the ICU doctor wasn’t convinced I was right and he ended up even sicker. 

In September, he got similar symptoms again.  But this time, I was 100% sure.  I KNEW.  I got different results.  I didn’t hesitate. 

I liken it to being on a roadtrip to a new destination where I’ve never been.  I can see the signs, I can guestimate, but I don’t know for sure.  But once I’ve been on a road before, I know where all the gas stations are, the potholes, etc. 

Currently, Manny is sick again.  His labs are “off”.  Today, the (new) GI had her nurse ask me if I’d consider trailing feeds again?  Well … I’ve been on this road 1000 times!  Each time it ends the same way.  I’m not real keen on getting back on this road again.  If you’ve been reading this blog at all … you’re probably not real keen on it either! 

I wanted to tell the nurse HECK no.  (OK, that’s the “edited version” of what I thought! LOL)  But instead I told her I would consider it if I could have a long, detailed conversation with the GI about how to protect him through the trials.  In my head I thought this would just buy me some time.  (I have an appointment with the GI next Wednesday.) 

After I hung up, I realized the best way to handle it.  On Wednesday, I will see if she brings it up.  If she does, then I will ask her to outline her plan.  I will have on hand the document I will create that outlines all his previous feeding trials and results.  (I’m assuming what she will suggest will have already been tried!)  And if she pushes for it, rather than being the resistant one who is non compliant … I will say she needs the Pulmonologist clearance prior to the feeding trial.  That he will need to be on board and have a say of when to pull the plug on the experiment, etc.  I know good and well that the Pulmonologist will have a proverbial cow about even talking about it! Then it’s a doctor saying no and not just me. 

But the bottom line is … I have doubt.  I’m 100% percent sure this will be a bad idea to trial feeds.  He’ll end up in the hospital with respiratory distress in no time.  That’s not the doubt.  The question in my head is … at what cost?  And what if I’m wrong? 

But that’s my decision.  No feeds without a clearer plan. 

April 7 …

Fast forward.  Manny’s labs on April 1 were back to “normal” again.  The liver enzymes (the ones the GI freaked out about) were back to his baseline and even slightly lower.  Like I had thought, it was a fluke, not the beginnings of liver failure.  I was right to say no to the feeds. 

April 3 is when I went back to the GI and even though the labs were back fine, she was still hinting around about the feeds.  I get it.  Really do!  I mean, a GI’s job is to get the digestive tract thing going/working. 

What she doesn’t know is the first hand hell that we experience every time in ever increasing horrors.  She has never been there to see him gasping for breath or his heart rate near 300.  She’s never heard him begging for help as he basically drowns in his own secretions. 

We instead discussed how we could get to a mitochondrial doctor.  Maybe they have some suggestions and places to start!  Perhaps they could help guide the GI portion of his care in the future.  So we’re working on trying to locate the right doctor and right direction to head. 

Meanwhile, Manny’s been sick since adenoid surgery.  I say “adenoid” because … did you know?  There is only one adenoid?  People say they had their adenoids taken out but really it’s just one big one?  Just a little factoid for you. 

Anyway, once that came out, he has had troubles ever since.  Everything has settled in his tonsils and is blocking his airway.  He’s having trouble breathing.  Needing oxygen.  It’s quite sad and scary.  Then his tonsils looked like strep and he got his first ear infection so they put him on an antibiotic that went in his feeding tube.  That had no effect.  So we had to get the IV version.  (Long story short, this shouldn’t take an act of congress to get but it does for some reason.)  But we got it. 

Another thing happened one day during all of this … not sure why but Manny got choked and couldn’t breathe.  It was quite scary.  I had been in the kitchen cooking and then stepped out for a second and the kids yelled for me.  I ran and saw he wasn’t breathing at all.  I started praying and trying to clear his airway.  Then I had one kid go run get Dan in his office.  He stayed with Manny and prayed for him while I ran to my bedroom for some supplies.  I was eventually able to clear it and all was well.  But those were a few scary minutes.  I still don’t know what happened but man!  Those episodes seem to take years off your life.  (I hope not!) 

And finally about Manny … he still has a horrible diaper area rash.  They think staph because of the way it responds to antibiotics but it’s never been specifically swabbed.  As soon as the antibiotics are done, it comes right back.  I won’t be overly descriptive but suffice to say … it’s a rash that’s come and gone since Thanksgiving and it bleeds it’s so bad.  He NEVER complains about it! Poor guy.

Here's a link of him waiting in the van at the doctor's office ... during this time, he had a fever, tonsilitis, an ear infection and a bleeding staph sore.  Yet  THIS is what he's like ...  (It's worth checking out, trust me!)

http://www.youtube.com/watch?v=wlFp72FPJ30&feature=youtube_gdata_player 

Now … on to a completely new topic …

On Friday, March 29, Luke (9) started acting a little “off”.  It wasn’t super noticeable but just a little off.  Low key.  Low energy.  Low appetite. Headache, etc.  Saturday it was more noticeable.  Sunday he got a low grade fever.  In the middle of the night he came in saying, “I’m hot”.  Luke is sometimes … uh, how do I put it … overly dramatic.  So at 3 am, I wasn’t all that impressed with that sentence.  I told him to go get the thermometer. 

“103.1” he says.  To which I bolted out of bed and got that kid some medicine. 

Monday morning first thing we went to the Urgent care (out pediatrician was out sick herself).  They diagnosed him with strep and a bad sinus infection.  He had one small white spot on the left tonsil.  Started him on Amoxicillin.  I thought it was all over.  Strep is usually much much better 24 hours after starting antibiotics. 

From Monday to Thursday, his fever kept going up.  At one point it was over 105.  He was having some slight airway issues (on top of his asthma which got triggered). 

Thursday afternoon he said his throat was hurting more than ever.  So I looked in his throat.  Uh … it was disgusting!  Both tonsils were COVERED in white nastiness and they were both huge.  His temp was still over 104.  The Doctor’s office is closed on Thursday afternoons so back to the Urgent Care we went.  (3 times in one week, twice with Luke and once with Manny.  And we hadn’t been there in over a year prior to that!)

As I took this picture and this temperature, he said, "I TOLD you I was hot!" Gotta love 9 year old boys!

It was a different doctor and he agreed that the antibiotic should have taken care of strep but those persistent high fevers and continued worsening of the tonsils concerned him too.  He gave us a new antibiotic, Zithromax, just in case.  He also did a chest xray as he heard a little something in the middle lobe.  Chest xray wasn’t all that impressive but as I know (and he explained), chest xrays “lag” behind. 

Here's when it's NOT so bad!

 

By Friday evening, (the 24 hour mark of the new antibiotic), he was starting to feel a bit better.  The fever was finally below 101.  He was hungry for the first time in a week.  (Not much but a little.) 

Just for fun, as I was getting the kids ready for bed, I noticed Sam (11) and his cheeks looked a bit flushed.  I took him to the light and noticed silver dollar sized marks on both cheeks that were red like a sunburn color but there were tiny raised dots there too.  Some kind of strange rash!  I checked him from head to toe at that point and found nothing else strange.  (I then thoroughly checked Jacob, Kaley and Zoe … thankfully nothing out of the ordinary!) 

On Saturday, Luke started coughing up “chunks”.  I have no way to describe these things.  Bigger than peas but smaller than dimes.  Looked like his skin color but was covered in blood.  Not massive amounts of blood, but super scary looking.  Meanwhile, he still was sounding like wheezing to me.  He was doing round the clock nebulizer treatments.  They seemed to help for a little bit but not for long. 

Then Saturday afternoon, he came to me a bit freaked out … his lips were very, very swollen!  I immediately thought about medications.  He’d been on the new med for several days by now and it is taken only once a day – at night.  So I doubted it was this.  But I never did find the source.  It took HOURS for his lips to look back to normal.  In the meantime, I checked his tongue and airway… all that looked just fine. 

Sunday, he’s having the darndest time with coughing.  He’s still coughing up some chunks, just less blood now.  But his cough is uncontrollable unless he’s during a nebulizer treatment.  He’s scheduled to see his regular doctor first thing Monday morning to help us with the big picture.  He no longer has any fever but the tonsils still are quite “rough” looking. 

So that’s part of my update.  You know, just a regular “day in the life” type of stuff.  Ha. 

Kids Are Heroes

The night was amazing.  Kaley (13) was nominated as a “Kids are Heroes” award recipient.  The moment she found out about it, she asked if she could get a fancy dress.  (Of course.)  A few days later she got a Happy Meal (don’t judge me!).  What I think is sweet is that at 13, she still WANTS a happy meal with the toy.  In this one was a Barbie plastic pink tiara.  She exclaimed that she would be wearing that to the party! 

Uh … Mama has other plans.  While it’s incredibly sweet and so very “childlike”, I wasn’t about to let her wear a 50 cent  tiara to a party where she was supposed to feel like a princess!  So we bought her a real one.  (Ok, a fake one, but you know what I mean.) 

Why was she nominated?  For her selfless love and devotion for 3 years with Manny.  She missed both her 12^th and 13^th birthdays due to us being admitted to the hospital on those days!  We were in the hospital for all of Christmas one year.  She puts him to bed in her bed nightly (and cries when I tell her she needs a break).  But by her doing that? It’s a gift of about 2 hours per night where I have no kids to attend!  It’s the difference between being semi sane and downright loopy.  She also comes with me every time to the hospital when we’re admitted.  Why?  So if I have to pee or grab food at the cafeteria or (heaven forbid) shower, he doesn’t freak out that I’m leaving him.  (Remember?  He was abandoned at a hospital.  So to him, hospital means “Mom leaves you.” I’ve spent 2 years assuring him that WILL NOT HAPPEN.  And she is a key part of it. 

 

There’s a million more reasons … but she is my hero.  And I thought it was time others recognized her. 

We all wore our fancy party clothes.  Kaley wore her new sparking jewelry and tiara.  She walked up to where Manny was sitting and he said, “Are you a princess, Kaley?” And she said YES! He then said Zoe was one too.  (My heart melted)

 

So we went to the party.  Daddy, Zoe, Manny, Kaley and I (we were allowed only 3 guests but they let us in with Manny since he doesn’t eat nor need a seat).  It was outside on the patio of the Tampa Bay Times Forum (where the Lightning Hockey team plays).  And normally that would have been a wonderful thing!  But … uh, it was FREEZING.  And no one knew it was outside!  (That little detail was left out.)  So we froze our hineys off.  Kaley and Zoe even had bare legs!  Thankfully I had spare blankets in the van so I grabbed those. 

The night was full of inspiring stories as they told a blurb about each kid.  The announcer even made a comment about being hopeful if there were so many great kids in the world doing amaing things for others.  There were stories of kids saving people by calling 911.  Kids who stood up to bullies.  Kids who cared for special needs family members.  Kids who raised money and donated it to worthy causes.  A few brought tears to my eyes.  Wow! 

There was only one “hiccup” in the night.  The dinner was buffet style.  The announcer (trying to be cute and funny to kids) said that, “The ugly kids had to go first and the cute kids had to go last.”  He was trying to say not to rush to the front of the line.  What he didn’t know … Zoe burst into tears.  She said, “Do I really have to go to the front of the line?”  It was all I could do not to cry with her.  It took me most of the night to put her psyche back.  I assured her it was a joke.  I told her over and over that she is NOT ugly.  That it doesn’t matter how many people have said it, that doesn’t make it true. 

Today, I decided to write the announcer.  I was very kind in the way I said it.  But I told him what happened last night.  I even sent him a link to her book.  Maybe he’ll rethink an offhanded comment like that next time.

 

The night was uplifting and amazing.  It was topped off by the most amazing full moon on our drive home. 

I just publicly want to say two things:

1)      Zoe … you are beautiful.  Inside and out.  I’m one of the most blessed people on the planet because *I* am the one God chose to be your mama.  You make me proud every day.  I’m sorry that not everyone can see past their own insecurities to see your beauty.  I’m sorry that you have EVER felt less than perfect.  Please know how much I adore you. 

2)      Kaley … you are my hero every day.  If you could ever see just the depth of admiration I have for you, you’d be blown away.  I still remember the first day I ever heard about you.  We knew we wanted to adopt Jacob but we didn’t know you existed.  Then when they said, “Both or none.”  It was a shocking way to find out there was a 2 month old baby, but I’ve always called you my “Bonus baby”.  I’ve never had one moment of second thought about making you my daughter.  You make me proud every day.  I love you with my whole heart. 

 

Three Years

Three years! 

Three years ago today … we met little Man for the first time.  I walked into Arnold Palmer Hospital in Orlando Florida about 8am. 

By 10 am, we were in our car headed home. 

Manny was 9 months old.  He’d spent the last month in the hospital alone.   His birthmother had done what she felt best for him and placed him for adoption.  During that month, he had double pneumonia, countless tests, various viral infections, was taken off bottle feeds, and had major surgery.  We were taking him home the day they felt he was finally well enough to be released. 

First picture we saw of Manny

Up until that day, he’d only heard Spanish. His birthfamily only speaks Spanish.  They gave him all therapists, nurses and social workers who spoke Spanish. 

I remember picking him up in my arms … He was VERY difficult to hold.  I remember thinking it was like holding a 16 pound bag of jello.  It was difficult making sure I had his head, both arms and both legs all going in the same direction! 

Remember?  He could only move his eyes at the time.  His hands were stuck in fists.  His head had no hair on the back and left side from being stuck in the same position.  His legs were in the “frog” position.  He couldn’t talk. 

But his eyes.  Not only were they beautiful, they were intense.  I could see HIM in those eyes.  I could see how much intelligence was there.  And how he just needed to be “unlocked”. 

We stopped for a restroom/snack break about halfway home.  And that’s when I had Kaley take a picture of us.  He was our legal foster child at the time and not legally adopted so we couldn’t put pictures of him yet.  But I knew people would want to know about Manny. 

So I posted THIS picture of him as my way of announcing to the world that we had a new son. 

 

I’ll never forget the first night.  He slept in the crib right next to me.  I remember feeling so helpless with him.  If he needed to scratch his nose, he couldn’t.  If he was in pain, he couldn’t tell me.  If he needed anything, how would I know?  At one point in the night, he let out the tiniest whimper.  It was softer than a newborn kitten’s meow. 

I cried.  I also prayed.  I asked God to help him speak really well so he could articulate his needs.  And man did He answer that prayer! 

All day I’ve been reflecting back to that day.  I certainly can’t tell you that everything has been sunshine and roses.  Truth is … it’s been the hardest 3 years of my life.  I’ve failed so many times in the past 3 years.  I shudder to think.  I’ve let my other kids down in innumerable ways.  We have financial strain.  Relationship strain.  Many things have taken the back burner … important things.  I’ve faced horrible struggles … some have been included in this blog, many have not been. 

And yet … I also can’t begin to innumerate the blessings we’ve received these past 3 years.  The gift that Manny has been in our lives.  My children understand patience and priorities.  They understand personal sacrifice for the greater good.  They have learned some independence (like being without Mommy for a month at a time sometimes). 

Sometimes I wonder if what we have done was “fair” to them?  Would they chose this life if they had the choice?  But I know the answer … almost every night at prayer time, they thank God for Manny.  For him being a part of our family.  They get it. 

I’m thankful for the past 3 years.  After we had him for 6 weeks, he landed in the hospital and told he wouldn’t live another month.  So in truth … we’ve had almost 3 years of “Bonus Manny Time”.  A fact that never leaves my head. 

And me?  I’ve grown too.  In ways that are hard to articulate.  He no longer feels like I’m holding Jello.  I learned more medical terminology and procedures in the past 3 years that many medical professionals learn in that same time frame.  I’ve gained a huge support system. 

I’ve grown patience in ways that are unbelievable to even me.  (Like yesterday when we went to the hospital.  We were told to be there at 10:15 for a 12:15 surgery but once we arrived we were told it was actually a 3:30 surgery.) 

But I’ve also lost patience with certain things.  Like bull57i+ for example!  And people who don’t get it.  Like recently, a person came to my house to deliver something.  They have had a rough time by most people ‘s standards (a job and relationship loss).  But they have family who loves them, they have huge support, they have healthy children, etc etc.  And this person was whining about their life.  It took all the restraint in the world to not rip that person’s head off.  Why?  Just about an hour earlier, I had gotten the call that a friend’s child had just died.  I had several others who were in ICU fighting for their lives.  I had just returned with another close call with Manny.  I wanted to shake this person.  I wanted to tell him/her how wonderful his/her life was.  I wanted to show him/her some perspective!  You should be proud that instead I just said, “Thanks”.  I prayed a blessing over them.  I sent them away. 

I wonder what I’ll be writing in 3 years from now.  I’ll have a perspective that I can’t possibly have now. 

Manny.  He’s a gift to many.  I know he’s inspired many people.  There’s just something about him that transcends race and gender and age.  People fall in love with him the moment they see him. 

He’s a blessing.  I’m more than happy to “share” him.  I’m just in awe still that God chose ME to be his Mama. 

To my sweet, precious Manny.  I love you more than I could ever imagine one person loving another human being.  I’ve spent the past 3 years fighting for you, praying for you, worrying over you, caring for you, scared for you, in wonder of you, delighted by you.  You are a treasure whose worth immeasurable.  I love the way you laugh so hard that you lose your breath.  I love how when you do something “naughty” that you immediately say, “Sorry Mama”.  I adore how you have such empathy.  Like just tonight you heard the commotion in the other room and said, “Is Luke Sad?” And you were right.  You said you wanted to tell him you were sorry he was sad.  I’m blown away by the way you can walk into a room full of strangers and immediately compel that crowd to action.  I’m in awe of how much you love life.  And I’m so happy to be your Mama.  Thanks for coming in to our lives. 

Spring Break

We got out of the hospital.  It was a quick thing.  Our usual protocol with a fever is that we get blood cultures once we’re admitted and then we can go home when we have two negative cultures.  They come in every 24 hours.  So basically 48 hours later (if fever free) we can go home.  But our “usual” doctor wasn’t there and the other one let us go.  BEFORE we even got one negative culture. 

Why is this a big deal?  Because remember back to December 2011 and Manny barely survived?  It was a line infection.  Only symptom was a fever.  If his broviac gets an infection, it goes straight to the bloodstream (called sepsis) and it’s very dangerous. 

If I was scared of him actually having a line infection, I would have insisted we stay until we met protocol.  But I knew he likely had something viral.  Why? Because I had a sick kid at home with similar symptoms.  And while we were at the hospital, 2 more kids got sick.  So this wasn’t a line infection, this was contagious.  (Yes, that’s good news for us!) 

So we got home.  Now this was the start of Spring Break.  And I had 4 sick kids.  Not exactly the start I was hoping for.  But at least we were out of the hospital!

Over our week of spring break, we went bowling.  Yes, even Manny.  It was his second time of bowling.  The first time  was last year and I sat him on the ground and helped him roll the ball.  He did that a few frames.  But this time, we left him in his wheelchair and got him the ramp.  We helped get the ball up there and he would roll it.  He loved it and played every frame!  He even picked up a couple of spares.  :)

We went to Busch Gardens.  He especially loves the train and the baby train.  For the train, he rides on the back in his wheelchair.  We ride it basically every time we go.  He has a fancy kidkart which is a wheelchair but still looks a bit like a stroller.  Dan and the other kids were riding rides and Manny and I went to get on the train.  I walk up to the Handicap access area and stand.  The conductor tells me that I have to disassemble my stroller.  I tell him it’s a wheelchair.  He starts to argue with me.  I stay calm.  I tell him that I ride on the train all the time.  He says, “How do you ride on the train?”  Me: “In the handicapped section.”  Him: “You can’t put a stroller in the handicap section.”  Me: “I understand.  This is a wheelchair.  It’s a cool looking one, but it’s a wheelchair.”  It was ridiculous.  Eventually he lets me in, unconvinced that it’s a wheelchair. 

When we got in the back section, I was amused that the two people in the section were people who could walk, they just rented the wheelchairs for the day from Busch Gardens due to fatiguing easily.  And they were let in with no questions asked!  But Manny?  A permanently disabled child who can’t use his legs or arms, a child who eats only via IV can’t get in the handicapped section?  LOL

Now I realize that the reason this happens is due to people who take advantage of the system.  I’m sure people try to sneak strollers on all the time.  They try to bend the rules.  Try to get away with stuff.  But how about the people with legitimate needs?  Seriously?  Ugh ugh Ugh. 

We did our nice train ride and then met up with the family.  We then went to the section where there is the baby train.  On this he has to get out and ride without a chair.  He can sit fine in the train but JUST IN CASE he were to lose head control (he does that sometimes), we have one of our kids ride with him.  Zoe is now the only one short enough to ride with him.  He was hooked up to his TPN at the time.  Dan walked him to the train and put him in.  The ride operator, Chris, came over and was so kind and understanding.  He told me that he was going to have to check the seatbelt and is there anything he needed to know before he did that?  He was treating my kid like a human being!  He recognized there was a disability and was trying to find what accommodations he would need. 

I cried!  I actually went over and told him about how amazing it was what he did.  I told him that just a few minutes earlier we had just had the opposite experience and that I just needed him to know how much it meant to me.  I’ve written a letter to Busch Gardens about him. 

During Spring Break, we also went to a few places that are selling Shamrocks for the MDA.  Popeyes chicken and Lowes specifically.  We took pictures and told the staff how we appreciated what they are doing for families in the Tampa Bay area.  This is the thing we saw when we went into our local Lowe's.  Yes, that sign was for our Manny.  hadMDA had sent out some flyers to the Lowe's in the Tampa area as motivation as to why they are doing what they are doing.  One of those was about Manny.  The night before we arrived they had made this sign.  They didn't know we lived locally nor that we would be popping in.  And coordinator?  She hugged me and said that she has been praying for our family daily.  ... how incredibly humbling!  No words. 

We went to a fun park.  Manny’s favorite part there was this pretend kitchen.  He kept making me food.  I think I had 100 servings of pretend ice cream. 

 

 

And we went to a fundraiser for the MDA.  Every year, the firefighters of Pinellas Park put on a HUGE event called “Chili Blaze”.  It’s a bike show, chili cookoff, concert, etc.  About 10,000 people show up they say.  Fireworks at the end.  What a fun night! 

Manny tuckered out.