Thursday, June 26, 2014

15 Years After "I Do"...and why I wouldn't marry that guy again

Today, June 26, is our 15th wedding anniversary.  We were so young. 

Now we're....well, not so young!   Why wouldn't I marry that guy again?  He doesn't exist anymore.  We've both changed a lot since our wedding, especially since becoming parents.  And to be completely honest, we've changed a lot more since Eli's diagnosis.

With our wedding vows we promised to love each other through sickness and health.  We didn't know that meant the sickness and health of our children.  We didn't know we'd have to hand over our child multiple times for major and minor surgeries and wonder if we'd see him alive again. 

For eight years of marriage we enjoyed each other's company, traveled, and moved back to our hometown.  We also helped the other through our own personal health issues; he helped me deal with eye problems that involved a lot of steroids and I helped him through kidney stones.  Shortly after we moved back to Washington, we stood together by my father as he took his last breaths.  A few short months later we did the same thing with Bryan's grandfather. 

We got to surprise our families with the news that we would be giving both sides their first grandchild.  Bryan was at most of the appointments and in the delivery room with me. We hadn't agreed on a name until we were holding our son for the first time.  We looked at each other and one of us said, "He's our Zachary."  No doubt, it was the perfect name for him.  And he's perfect for us. 

Two and a half years later we surprised our family again with news that Zachary was going to be a big brother.  Again, Bryan was with me through almost all the appointments and in the delivery room.  My favorite moment was when he brought Zachary in to meet his newborn sibling.  We didn't find out the gender with either pregnancy so Zachary was the first to know he had a baby brother.  Upon seeing Eli swaddled in my arms, Zachary said "He's so cute and tiny!"  Again, another baby who was perfect for us. 

A few weeks later we were both sucker punched by a small woman in St. Mary's Pediatric Intensive Care Unit.  She (who has to have one of the toughest jobs in the world when it comes to stuff like this) had to tell us something was wrong with our newborn's heart.  She drew us pictures.  After we discussed what had to immediately be discussed and she left the room, we sat in silence, staring at our sleeping baby.  We couldn't speak.  We didn't have to speak because we had each other. A few hours later we watched Eli being loaded onto a helicopter.  I couldn't have spent those hours with anyone else.  No one else understood what it felt like.  Only Bryan. 

The guy I married that day wouldn't have been able to look at his child on a ventilator with his chest open.  He couldn't have known he'd be tested on putting tubes down his small son's nose into his stomach for food.  He didn't know he'd have to choose between staying in a hospital room on an uncomfortable couch with beeping machinery or staying away from that hospital for days at a time to spend quality time with Zachary and return to work so we'd have insurance for Eli.  As much as we love spending time with Zachary, I don't know how Bryan stayed away.  I couldn't have, but I'm grateful he did.  He stepped up and provided for us.  And still does.

The guy I married that day wouldn't have gotten up multiple times a night to add formula to Eli's feeding.  He wouldn't have taken Zachary fishing and spent time making sure Z knows he's every bit as important to us as Eli is.  Okay, he might have done those things, but not out of the love he does now.  Now we understand how a simple evening spent on the couch with the four of us reading stories and watching movies can be the best time of our life.  The guy I married couldn't have helped me through a physically and emotionally painful miscarriage last summer that not many knew about.  Together we got through that.  Together we got through being told Eli had multiple strokes and may not wake up.  Incidentally, our lost baby was due fifteen days after Eli's stroke (which was also my dad's birthday).  Emotions were high.

The guy I married that day in 1999 doesn't interest me anymore.  I've found someone better.  Someone I have even more in common with.  Someone who is in love with the person I am now.  Someone who has earned to be loved for the devotion he has shown to me and our family.  No, I wouldn't marry that good looking guy who stood up there with me on our wedding day.  I've found someone better.  Happy Anniversary, Bryan.  I can't even begin to guess what the next fifteen years holds for us but I know we'll get through it together. 

Tuesday, June 10, 2014

Thick or Thin?

Eli's swallow study was great!  The therapist performing the test was the same one who did his last one at St. Mary's.  It was nice to see her again and for her to see Eli!  Even better than that, I love when there's continuity of care for him because he's such an overall complex kiddo. 

In typical Eli fashion, he fussed a little at first, but then he cooperated wonderfully.  He started by eating apples covered in powdered barium (who wouldn't love that?) and drank nectar thickened juice and milk each mixed with barium.  Those went well, as we expected.  Next the therapist tried plain, non-thickened Gatorade also mixed with barium (barium is what makes his swallow visible on xray).  As we watched the xray in real time, no issues were noted. 

After he was done, the therapist went through each picture and video in slow motion to look for any signs of aspiration.  She saw none :)  Because Eli has a persistent cough right now related to allergies and the virus he tested positive for last week, she recommended we wait to start him on thin liquids.  You know when you "swallow wrong" and it "goes down the wrong pipe?"  What do you do?  You automatically cough.  That's one sign of aspiration.  If he already has a cough then we won't know if he's coughing just because he has a cough or because he's aspirating. 

So, technically Eli is cleared to have thin liquids!  We'll just wait a while after his cough goes away to actually take away the nectar thickened liquids.  She did say we could go ahead and give him jello, ice cream, or popsicles which are all things he's not been allowed because of their thin liquid consistency when they melt. 

After we finished with his test we visited the Peds unit.  Even though Eli was only a patient there for 16 days, he became very famous.  Even now when we visit, staff we didn't meet will come out and say, "Oh, this is the Eli everyone talks about!"  We got to see many familiar faces which is always nice.  One of his Occupational Therapists knew he was coming and had asked staff to call her when Eli got there so she could visit.  Eli had fun showing off how well he could run up and down the hall.  He also showed a little work with his left hand.  He had a great game of "toss things I shouldn't because I can get away with it now since I'm so cute and mom won't make me stop with a crowd of admirers."  And, yes, he even invaded the nurses station and tried to use the computers and make phone calls. 

Zachary has been busy the past two evenings with his first Vacation Bible School.  We've wanted to sign him up in years past but the dates never worked out with whatever we had going on.  This week he's going to Our Lady of Hope's camp (at Washington Catholic) and he is loving it.  Next week he is signed up to go to the one at Bethel United Methodist.  We asked him several times if he really wanted to do both and he was adamant that's what he wanted.  However, when I asked him one night he did say he was worried about something.  I asked what and he said, "What if I get confused going to two church schools?"  I was very impressed with his question, as it was coming from a six year old!  I just told him that the point of both was to go and learn about God and Jesus while having a good time making new friends.  Then I told him it's like when Mommy and Daddy each teach him something, but we do it differently from each other.  Like tying his shoes.  We each do it a little differently and told him to chose what works best for him.  I told him going to two bible schools was like that; he can learn from both and use it how he likes.  He liked that answer and asked if there was a third bible school to go to this summer!  I told him two was enough!

It was a busy day and Eli and I capped it off with a stop at Krispy Kreme.  No, it's not the healthiest choice, but darn they're good!  And I'm proud of myself because I've only had one as I type this update (plus the two I ate on the way home!).  Hopefully the boys sleep well tonight and Eli's pump doesn't give me any trouble because this momma is tired!  Eli has therapy first thing in the morning and the nights go very quickly around here!

Thank you for the prayers for a good test today.  Eli cooperated well and we got good results.  He does still have a lot of work to do in therapy, but his progress since the strokes is absolutely amazing.  God is good!

Wednesday, June 4, 2014

The Preliminary Results....

We don't have the final culture results in, but the preliminary reports show no signs of growth!!!  That's the negative we were praying/begging/pleading to get :)  Thank you for all the prayers and expressions of concern.  We've had many texts, private messages, and comments in the last few days asking how Eli's doing and if we have any results.  Thank you! 

If you remember, when we went to Dr. Amy's last Friday (the morning after the fever started & we had cultures drawn) she said Eli's right ear was red.  Sadly, that news excited us very much.  We were hopeful it was just simply an ear infection but with Eli's history we couldn't be sure.  He was started on an antibiotic which he is currently still taking.  Since then, he hasn't had a temperature over 99.5, in fact it's usually 97 or 98.  And, no, I don't take his temperature all the time!  It's not even daily.  Eli has had issues with allergies (as does EVERYONE these days!) although I'm beginning to think he's got more of a head cold than allergies right now.  His nose has been very runny over the past several days and he has a nasty sounding cough throughout the day and especially at night.  The cough sounds like a drainage cough and his lungs sound very clear throughout so I'm not concerned that it's anything more serious at this point.  We're continuing his antibiotic as well as allergy medicine and the occasional dose of Dimetapp as needed for his congestion. 

Eli's still crankier than usual at times and very clingy, but honestly I can't blame all that on being ill.  He's been that way since his last discharge and being sick seems to have exacerbated it some.  You know, like three-year-olds can be!  Right now he and Zachary are dancing to a video in the living room while playing dinosaurs.  I love that my boys can multi-task!  They also made me place a box in the kitchen so they can put important things in it that we will need for vacation (which is still a month away!).  Heaven knows we can't go on vacation without microwave popcorn, special DVDs, and Zachary's binoculars!!!

Again, thank you for the prayers, concern, and support.  More prayers that he gets over this ear infection and head cold are appreciated as well as for the final culture results to be negative. Unfortunately because of Eli's history we will never be comfortable with any fever he has until we prove it's not caused by staph, so this may happen a lot.  Hopefully not for a long time because we desperately need some peaceful moments around here.  Although experiences like this once again make us realize how fortunate we are to have each other and appreciate Every Little Beat...

UPDATE:  About an hour after posting this we got a call from the doctor's office.  The final culture report is in and it is NEGATIVE.  You may begin your happy dance now, we did!