POST SURGERY

PLEASE don't let this picture fool you. I was 2 hours post-surgery and feeling HIGH as a KITE! It's the NEXT picture that shows my true feelings.

Lovely, huh? My nose is so red from rubbing it raw. Narcotics do that to me. I itch and itch and itch. Can you feel my pain?

The surgery went really well. Dr. S told me that it took longer than anticipated because he was having a hard time locating my vocal chords. So instead of 90 minutes, it turned into 3 hours. He did a great job though and is 99% sure that my thyroid is non-cancerous. There is a 20% chance that I'll need medication to regulate my thyroid function, but I won't know for a month. I'm praying that I'm in the 80% category.

Here is the infamous blown IV. See how SWOLLEN my arm is? It didn't even last 12 hours. I just can't fiure it out. Thankfully they were able to get another one in my opposite hand fairly easily.
The next few pictures are of the allergic reactions I had to the sticker leads. Itchy, itchy, ITCHY! (and they were only on my body for less than 4 hours.)



I'm home...48 hours later and I'm back in my own bed! :) Final results coming to a future post near you.

Keep your sunny side up!

Becky's thyroid surgery: done.

Lump on thyroid: successfully removed.

Right side of thyroid: mostly gone.

Worries about lump being cancerous: also mostly gone.

Official results due later in the week.

The patient? Have a look for yourself. She's got a nice clean bandage around her neck and a smile on her face. And this time, she means it! She's resting, but feeling good.

Becky's planning on a trip home tomorrow, where she can finish recovering in the comfort of her own home, surrounded by her husband and kids.

All the news is good news.

xoxo

Jenny

DHART DELIVERS

We're home,
it was a doorstop delivery.
Surgery tomorrow...
I'll have Jenny update.

JOURNEY HOME

I'm overwhelmed. Not because Ben's coming home on the vent, I'm overwhelmed because he is. I know...it's confusing. Machines don't bother me, I've been dealing with them for seven years. I can handle a ventilator and everything else that goes along with it. I'm just having a hard time wrapping my brain around the fact that he's not weaning off the vent like all the other times. Why now? And it was only a cold...just a cold. Unless you have experienced life with a chronically ill child, it's hard to understand. Death is something I don't like to focus on or think about, but it's real and it's my reality. I can't help but wonder if his time is close...and wondering hurts. His body seems to be tiring, that left lung is so weak. "I need you!" I whisper. He turns his head towards mine and I smile because I know that he gets it. Tomorrow we make the journey back home. Back to the arms of his daddy. Back to the slobbery kisses of his siblings. Back to the comfort of his own bed and routine. Back to a brand new kind of normal.

*****

And then we will carry on, like we always do.

HIGH MAINTENANCE

Ben=LOTS of equipment.

Here's the latest, greatest!
It's the cadillac of Home Vents.
Equipment...it's part of the privilege of taking care of Benjamin. Most I could do without. The problem is, Ben CAN'T! He needs it and I'm okay with that. It's always a little overwhelming at first. I remember the day he came home from the hospital. We didn't just carry out a baby in a carseat with a diaper bag in tow. He came with oxygen, a suction machine, lots of suction cathetars, a pulse oximeter, feeding tube supplies, and medication. It became our new normal. Every month I order new supplies. Every month, lots and lots of boxes come to our doorstep.
It's like Christmas!
(except not)
As he grows, so do his needs. We gradually added formula, beneprotein and benefiber, g-tube supplies, diapers, and chucks. Then he was trached. That came with a compressor and heated humidification hardware, tubes, wires, a concentrator, trach masks and trachs. Throw in a cough assist and chest therapy machine. Now he is cathed...that means foley cathetars, cathetar kits, urinary bags, and syringes. The list keeps growing. The latest? A vent. More equipment, more supplies. I'm a little overwhelmed, but I know this feeling will pass.
It always does.

HOLD ON TIGHT!

Yesterday I had plans to drive from the hospital to go see Kaleb and Stevie's soccer games in Alton. Sometimes things don't go as planned. It's part of life. That's what makes living it SO exciting. The soccer game? It's a two hour drive...and I was late getting started. It was one of those crazy days at the hospital. There were meetings and paperwork and phonecalls. All having to do with a home vent. I was on the road by 2pm and making good time. With about 30 minutes left in my drive, I passed a police officer going the other way. He threw his lights on. I MAY or MAY NOT have been going a little faster than I should've been. I went to push the brakes to slow my speed. My foot went to the floor - right through the brake. They were gone. Nothing. I threw my car into 3rd gear and then low and finally my E-brake. I pulled over fully expecting the police officer to have pulled a u-turn to come back and find me. Nothing. Whatever the reason for the officer to flash his lights, it allowed for me to realize my brakes were gone in a n0n-emergent situation. I was very lucky. There were no cars in front of me, and no cars in back of me. I sat there for a minute, waiting for my heart to slow down. I thought about the highway, driving at high speeds and all the in-town bumper to bumper traffic I just drove through. Can you imagine what could have happened had my brakes failed earlier? I was truly being watched over. I called our mechanic, Al. THANK GOODNESS for this dear friend of ours. "Bring it right in" he tells me. I drive all the way back DOWN the mountain I had just driven up. That's an adventure with no brakes. It was a 20 minute drive to his shop. I made it. Steve met me there. My brake line was broken...hence the no brakes. Three hours later (working after normal work hours) the van was fixed. I gave Al a big smooch, promised him cinnamon rolls later, ran home to pick up Kaleb and kiss my girls goodnight and back to the hospital we went.

DECISIONS

When Ben was transferred to DHMC shortly after birth, I remember meetings. Meetings with lots of doctors. They told us that Ben would most likely never come off the ventilator. We were shocked. We had to decide whether or not to take him off of life support. HARD! Thankfully Ben made that decision for us. Then there were his feedings. He did not have a great suck/swallow/breathe reflex. It was more like suck/choke/gag/sort-a-swallow/stop breathing/turn blue reflex. I was determined to feed him by mouth...not knowing at the time that it was detrimental to him. It took about a month and a good surgeon to knock some sense into this determined mother. We had to decide whether or not to put in a g-tube. HARD! A year later he had a swallow test. It showed aspiration. We had to decide whether or not to do a "nissan fundoplication". (it's a stomach wrap) Major surgery. HARD! As a result of that surgery, he wasn't able to manage his secretions anymore. He needed a trach. We had to decide. HARD! Ben's muscles have severe contractures. There was a surgery available to help ease some of those contractures. We had to decide whether or not to go for it. HARD! Then there were the multiple PICU stays due to bacterial/viral pneumonias and RSV. The DNR subject came up often. We had to decide. HARD! This just scratches the surface. Here we are...7 years later. It hasn't gotten any easier. Today's subject? Bringing Ben home on a vent. UGH! I've been avoiding this his whole life. "Ben's lungs are tired, he isn't weaning from the vent" they tell me. If I want to take him home, this is my only option. HARD!

It's life altering. It's overwhelming. It's doable.

HAPPY BIRTHDAY....

...TO US!

(36 years young)

MY MOTHER

I love walking in the door after a few days away.

My family is always SO excited to see me.
The joy on their faces re-fills my well...

because sometimes it runs low.

Know what else re-fills my well?
My mom.

I LOVE this lady.

'nuff said...

(now if I could just get her to look AT the camera...)

OVER HERE mom!

LOVE ME SOME BENNY

MOTHER GUILT

I have it.

I have it when I am in the PICU with Ben.

I have it when I am home with my other children.
I do the best that I can.

I try to balance both places.
But no matter how hard I try....

Mother Guilt is always there.

To make things worse?

People love to tell me what is best.
(and they aren't afraid to say so either)
Most times they allude
to the fact that I spend too much
time in the hospital with Ben
and not enough time at home with my children.
My answer to that?

WALK IN MY SHOES!

Let me watch YOU as your child is struggling to breathe and is so helpless, who is screaming in such pain because the team of doctors are trying to shove a cuffed trach into the little hole in his neck for two hours, just so that he can get the urgent respiratory support that he needs. Let me watch YOU as you see him struggle to catch his breath when he goes into his awful coughing spasms, or stand there constantly suctioning all of his secretions from his trach, mouth and nose for hours on end. Let me watch YOU observe the 15 IV attempts that it took to finally get just ONE in...knowing that the IV probably won't last through the night but the bruises left behind will probably last 3 weeks. Let me watch YOU learn how to read the vent that helps your child to stay alive, worrying about all the different numbers and functions. Let me watch YOU as you constantly have to be on gaurd to make sure that your child is getting the right medication at the right time and in the right doses. Let me watch YOU make the daily difficult decisions that I have to face every day that I am here. Let me watch YOU as your heart bleeds for your suffering child while you realize that the only thing you can do is to climb up into the bed with him and wrap your loving arms around his broken body as the tears fall silently from your eyes. Let me watch as YOU listen to all the different alarms that are constantly going off in your child's room, not always knowing why? Let me watch YOU as the doctors and nurses talk to you about hard topics, such as DNR's and life expectencies. And let me watch YOU WRAP all of this up in your brain just to wonder if you would see my life a little differently.
I am a mother. I am a mother to three, healthy, normal children. I am a mother to a medically fragile child with multiple problems. When I am home, my three healthy children require most of my attention, while Benjamin takes a very quiet back seat. When I am in the PICU, my medically fragile child requires a lot of my attention, while my three healthy children understand and wait patiently for me to slip away to home when I can.

Living this life is not easy,
But we are happy living it.
It's a learning process,
and I have learned a lot.
And I LOVE that HE
trusts ME enough to do what is best
for each one of my precious children.