Eight Years Ago Today

June 8, 1999.

Eight years ago today Jack was discharged from St. Louis Children’s Hospital PICU after a three month stay that began on March 7, 1999. We were about two weeks short of discharge when I was asked who I wanted to manage Jack and his ventilator after we left the PICU. It never even occurred to me that we had to have someone “manage” the vent. I think the term they use is …. denial. I could not wrap my head around the fact that I had to actually walk out of that PICU with this huge monster of a machine (the “portable” ventilator) and that Jack had to actually be attached to it to breathe.

The one thing I did know with certainty was that I’d met every pulmonologist from Children’s during our multiple stays in the PICU and there wasn’t one of them that I wanted to work with. Realizing that I wasn’t going to budge and give them a name, one of the PICU intensivists - Dr. M - came to my rescue and said he would follow Jack if I wanted.  While Dr. M agreed to follow Jack, he assigned the day-to-day task of working with me, Jack and the vent to one of the PICU Fellows -- Dr. Garcia – a very compassionate and a very patient person. It shouldn't come as a surprise that I was not an easy parent to deal with those first few years of Jack’s life. Come to think of it, I’m still not an easy parent to deal with :-) Yet, Dr. Garcia was there with us every step of the way for two years. I had his pager number and email address and he was available and willing to help any time, any day. Upon completing his fellowship, Dr. Garcia returned to Puerto Rico. However, to this day, we still hear from Ricardo on Jack’s birthday, at Christmas and other holidays - he even remembers me on Mother's Day.

Jack and I were fortunate to be in the right place at the right time and were blessed by the willingness of two very special physicians to take on the challenge of Jack (and his mom). They will both forever be a part of our “team”.

Drs. M and Garcia

One of the things I am most proud of is that since his discharge eight years ago – Jack has not been admitted to the hospital for a respiratory illness - ever. That’s quite remarkable for a ventilator dependent kid with a neuromuscular disease. About two weeks after Jack’s discharge, Dr. M told me in an email: “When we send home an infant on a ventilator and he/she is able to stay home for the first few weeks, i.e. they don’t need to be readmitted for some emergency right away, we feel this is a good sign. Yes, a vague sign, but a good sign nonetheless.” Needless to say, it was more than a vague sign – it became our standard – we don’t “do” ERs or hospitals (unless there is surgery involved or we disconnect ourselves from our vent for an extended period of time).

A lot of the credit for keeping Jack out of the hospital goes to Jack’s nurses, for not only providing excellent care, but for also trusting me. There have been many, many times when Jack’s nurses have strongly suggested that we go to the ER when Jack was sick. However, whenever I’d take the position that “we can handle this at home” – which is the position I always take - they have always deferred to my judgment and jumped in to get the job done to keep Jack home. Jack has had an amazing team of physicians and nurses who have kept him healthy and home!

During his extended stay in the PICU, Jack amassed quite a significant fan club among the doctors, nurses and respiratory therapists. As you can imagine – it was those eyes and that smile that drew people to Jack’s bedside. A few days before discharge, I left a book by Jack’s bed for those people who had cared for him to sign. Here are just a few of the comments left in Jack’s book:

Jack, I look forward to coming to work so I can see you. Seeing you always keeps my life in the proper perspective because even after all you have been through . . . you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy . . . you are “laid back Jack” and I love you! P.S. I will always hold you dear to my heart! You’re one tough little guy!

Jack, I am so glad to hear that you will be going home soon! Not because I want you to go, but because you deserve to be home with you family and friends who love you. I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes. Helping to take care of you has always been a pleasure and a true rewarding joy.

Jack, to one of the most beautiful babies I’ve ever seen. May these last months be the saddest you have, so everything is bright from now on. Stay as you are – beautiful.

Smilin’ Jack – We are so glad that you finally get to go home and be with your family. I know your sisters miss you! I am really going to miss seeing your darling, smiling face!! On bad days, I would come by and play with you for a few minutes and you would totally cheer me up. Take care sweet boy.

Little Jack Schrooten – a great title for a storybook. The little guy with the greatest smile. . . You will be missed, but I am so happy you are going home. I will be looking forward to social visits only in the future.

Jack, over the past 6 months I’ve had a chance to get to know you inside and out – all you have to show for it is a few scars! What I have to show for it is good memories of a handsome little boy with a wonderful family. My biggest wish for you is that you have a long, healthy life filled with love and happiness. Dr. M (Jack’s cardiothoracic surgeon)

Sweet, sweet Jack. This place is going to be a little less bright without your sunshine smile that you were so generous with. It has been a wonderful blessing to have known you and your mama. You are definitely a little angel sent from God to remind us why we do what we do. I guess you’ll have to find some other girls to flirt with. Just remember you can always come and visit – you don’t want us to go into Jack withdrawal, so please keep in touch. Thanks for the memories. May God’s hand always stay upon you.

Dear Jack, I’m so glad you’re finally going home. You were such a special little boy. It really won’t be the same here in the PICU without you here though. I could always count on coming over to your bedside and getting a big ‘ol smile. Even when times were down you brought joy to us.

Jack, what are we going to do without your smiling face? I will miss you terribly. I’m sad for us, but happy for you.

Jack, if you only knew how much joy you’ve brought to all of us here in the PICU . . . bless you and your family. May you find the joy in your life that you bring to those who love you.

Finally, I share with you some pictures from Jack’s discharge day. Eight years ago today ...

The sign on Jack's bed when I arrived in the morning

Jack and the very special Dr. Garcia

Jack wearing the hat Dr. Garcia got him as a going home present

Jack and his primary nurse, Kym - who came in on her day off to say good-bye to Jack
(incidently, Kym cared for Jack again last summer after his spinal fusion surgery)

In the car on the way home

At home, snuggled in bed with all his crap (aka, life support equipment)
(isn't that enough to scare the hell out of any parent?)