The Storm: A day in our hospital life

We already had a busy day planned when suddenly a great commotion over Cohen's PICC line and whether it was causing swelling in his arm created a major storm. I had an arm list of places I was expected to be and somehow the more the day went on the longer the list grew. 

Here is a glimpse:
7:30- Pre-Round evaluation

7:45- Mad dash to the cafeteria to purchase the biggest most caffeinated coffee I could find.

8:20- Pulmonologist arrives to Cohen's room to evaluate and take history. She was the first to comment on Cohen's arm. She also ordered x-rays and blood work.

9;30- Head to the Ronald McDonald House to pick up my two oldest girls to take them to their appointments.

9:50- Arrive back at hospital for the appointments.

11:15- Head to the playroom where the lovely Child Life Specialists have taken our super hero for a little play time.

11:30: Back up to our room where our nurse checked out his arm and requested an evaluation from the VAT team (the IV experts).

11:40- Fortunately, Rounds (the hallway gathering of  the medical team where we determine the plan of care for the day) were running behind, so I made it back just in time to participate. I was upset when I thought I would miss it because of the girls appointment. Because of Cohen's history it is so important for me to be there when they decide his plan. A very sweet Child Life Specialist hung out in the room with Cohen and the girls so I could actually hear the plan...lol

11:50- VAT team arrives, measures and evaluates his arm. She was concerned and made the decision to order an ultrasound to determine if the PICC line needed to be pulled and replaced.

12;30- Headed down stairs to get the girls over to their grandmother so that I could get Cohen to
x-ray. Our wonderful nurse went with us so that she could sit with Cohen while I rushed the girls over to the RMH where mamaw was waiting at the side door.

12:45- Wait for x-rays and remember that I was suppose to be in my home health evaluation at 1:00, once again my wonderful nurse stepped in and volunteered to notify her and reschedule it for later in the day.

1:20- Back up to the room when our sweet friend Amy (front desk coordinator for our floor) informed me that several home health people have been calling trying to reach me and that one was suppose to be here at 1:30. That makes 3 different home health people that had been trying to meet with me. Then, Amy sweetly asked me if I had eaten yet today.... hmmm that thought had not yet had a chance to enter my mind. Nor was ordering food a possibility since I apparently had a guest coming to train me on our home pump.

1:30- I was informed that Cohen's ultrasound would be at 2:30 and that a home health nurse would be here at 4:30 for my TPN training.

1:40- A very special girl visited us with a gift that finally broke me to tears, giving me a little Sunshine through the storm.

1:50- My pump training begins

2:20- Cohen falls asleep... of course, just in time to be woken up again.

2:50- Ultrasound transport arrives. Cohen was rudely awoken with a glucose prick test on his finger and then swept away to ultrasound... my sweet boy just rolled with punches.


4:15- We headed back upstairs. Amy asked again about the status of my food intake, which sadly still had not occurred... however the major headache had arrived.

4:30- Our home health nurse arrived but kept getting important phone calls so our training was became more and more delayed.

5:00- She finally looked at me and said, "You have had a long hard day and you look exhausted, let's just do this tomorrow." I think in that moment I heard angels singing.

5:30- Ordered food!

6:30- Finally, for the first time all day put food in my mouth!!!

7:00- Settled Cohen in with a movie so I could run over to the RMH to give the girls their nightly medicine and give some good night kisses.

8:00- Back to the hospital to give my little superhero his bath and nightly cuddles.

10:00- Finally got him to sleep and yep....you guest it, I CRASHED!

Sunshine Through the Storm

Yesterday, in the midst of our crazy day our front desk friend Amy appeared at my door. When I opened it she introduced me to a beautiful young lady named Zoe,

Zoe told me that she had spent a lot of time in this hospital on her journey to heal and now she wanted to bring a little joy to someone else in the midst of their own journey.


She handed me a sweet little giraffe for Cohen and then to my surprise an amazing  gift of $100. I could see the love in her eyes and the joy she had from being on the "WELL" side of the hospital door. Finally, the emotion of the week caught up with me in the gesture of one incredibly sweet girl.  I couldn't fight back the tears any more. She was just the sunshine I needed in the middle of our little storm.

It is so humbling to be on the receiving end of such an incredibly generous gift.

I will be forever grateful to you sweet Zoe and the gift of joy that you gave me when the weight of the day was at it's peek.

Big Ben Bowen

Whenever I see the date February 25 I am transported back in time. 

I remember where I was when I listened to the voice mail that crushed my heart. It was a cold, snowy day and we were in Indianapolis visiting family. 
I felt so helpless for my dear sweet  friend, there was nothing I could say or do that would bring her comfort. 

This year marks the 10th Anniversary of  Big Ben Bowen being reunited with his Creator. I can't even believe that I am typing those words. Vividly, I recall the events of those days in my mind. From the first moment I heard the news of his passing to witnessing the beautiful celebration of his life, the details of each event are etched in my heart. 


Thinking about his amazing life brings me such joy. This little guy with an infectious smile accomplished more in his short life than some of us do in a lifetime. God used Ben's pain for a greater purpose than anyone could have ever imagined. 
Because of Tom and Jennifer's faithfulness God changed many lives. I was privileged to have had the opportunity to walk so closely to them during that time, witnessing first hand the incredible work of God. 

Big Ben you are deeply missed on this side of heaven but your beautiful legacy will remain forever. What the devil intended for evil God continues to use for good! 

Tom and Jennifer, we will never forget him or your faithfulness. Thank you for allowing his light to shine on us all!

November 14, 2002 - February 25, 2005

                                               

http://www.bens-story.com/

Ben's Wikipedia Page

I will not complain...

Last week my big problem was that my washer decided that enough was enough and went on permanent strike. I was just thankful that it's financial timing was perfect, however I can't say as much for it being considerate of the pending snow storm.

After selecting the beast that would tackle the massive aftermath the old one left behind, we waited for it's highly anticipated arrival.  And then the snow came and the washer didn't...

And so I complained... a little... or perhaps a lot.

Twice my washer was brought within 400 yards of my home... and twice it was taken away because they couldn't get through the blizzard remnants to get it into the house.

But now I will no longer complain because 3 days ago life reminded me what a real problem was, knocking my washer and weather problem significantly down in the rankings. Cohen started getting sicker and we were having to consider the possibility of heading to Cincinnati.

Washer and storm problem status reduced too... just a terrible inconvenience!

I will not complain because... 48 hours ago, it was a done deal... we were told that it would probably be best to get him to Cincinnati and so we started making the arrangements for our travel.

That's when I petitioned my friends for prayers! 

Then 24 hours ago... I found myself involved in a furry of phone calls and blood tests in an attempt to figure out the best treatment plan for our superhero.  Our doctors in Cincinnati were corresponding with each other trying to figure out a plan, unfortunately, we are on uncharted waters with Cohen. Every illness is complicated by his FPIES, which requires us to carefully weigh treatments so they don't do more damage than the illness.

My little boy is so very strong and even through the pain of repeated blood work he would smile with tears streaming down his little face and then thank everyone when it was over. 

Then last night we saw the result of countless prayers....

I was still trying to get home from the doctors office when our amazing pulmonologist in Cincinnati called and I heard her speak the most beautiful words.... "Let's treat him at home for now and just keep a close eye on him!"  One of the advantages to having a doctor in the home and I am sure a major factor that played into her final decision. She gave me her number and instructed me to notify her in the event that he declines in the slightest. He is doing well enough now that we all feel comfortable with this plan.

Waiting to be taken to it's final resting place.

I could have done a happy dance.... however I was still sitting in my car!

What washer and storm problem??

I will not complain because nothing else matters right now... 

Cohen and I were suppose to be 6 hours away from the rest of our family, in a hospital with my little superhero... but were not.... were home. And although he isn't out of the woods just yet I have confidence he will be better soon and we will be giving God all the Glory.

I know that your prayers are responsible for this battle's victory and I can't thank you enough. Please keep praying us through the rest of the war, your faithfulness is making a difference in the life of one little superhero.

Did I mention we get to stay HOME? 

It's safe to say I'm extremely happy to have my entire family under one very snowy roof... I will never take that gift for granted!

Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 

"Cohen, do you want me to unplug you?" 

He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 

DESTROY THE POLE PARTY

In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window". 

For more information on feeding tubes visit our friends at Feeding Tube Awareness 

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.

Together we are teaching the world the true beauty of 

feeding tubes!

Kayla's Ronald McDonald House Fundraiser

Kayla is at it again! She has started a fundraiser to help raise money for the Ronald McDonald House by selling awareness T-Shirts for Cohen's condition, FPIES. All proceeds will go to the Ronald McDonald House.

We would appreciate your t-shirt purchase in support of her efforts, she is truly an amazing child and I feel so blessed to be her mother.

Sweatshirts, Unisex Short and Long Sleeve, Ladies and Youth sizes available. 
Fundraiser ends Jan 31, 2015 so get your soon at the link below.
Super Cohen T-Shirts

*She would like to thank her very talented Uncle Thomas for creating Super Cohen's logo. If you would like to view more of his work please visit, Alaweiz Custom'z on Facebook.

The House that Love Built: The Ronald McDonald House

This  House is a blessing to so many families every single day, I don't know how we could do this without them. Most of us go through our lives never expecting to depend on others in such a way and then suddenly without notice our lives halt and we find ourselves on the receiving side of giving.

I pray that one day soon our family will switch sides and become a giver once again, however the next time around we will have a much different perspective.

Our journey has taught me an invaluable lesson; giving in any form is an immeasurable gift to those that need it most, while receiving is extremely humbling and will forever change you for the good.

Thank you to the Ronald McDonald House and to everyone that gives of their time or money to make this a home to families like ours. 
You can help make this house a home.

Ronald McDonald House News Letter