The Tube Switch!

April 9, 2013
I woke up bright and early this morning to stop Jayson's feeding machine from pumping the last of his pedialyte into his system.  He had been tolerating his G feeds so well the past two weeks, with very minimal cramping and discomfort.  Today was the day he would get his permanent G-button in.  I wondered what it would look like and if it would be difficult to get used to.  I stared at Little J's peg tube contraption one more time.  Such a silly little thing to cause so much trouble and anguish.  Part of me wanted to keep it in and keep things just as they were.  I picked Jayson up carefully and held him in my arms.  Silent tears streamed down my face and dissolved in his little nightie as I wondered if the worst could happen.  Would I really lose my baby over this GJ tube?  Could we be one of those rare cases?  I had received so many warnings and counsel; was it to prepare me for the worst?  I knew I had no choice but to be brave, have faith and move forward.  But all I wanted to do was stay sitting on my bed, cradling my baby and listen to his sweet baby snore.  My mind started going places it shouldn't.  What if we had to return home without our baby?  Would our marriage survive it?  Would I have reason to live?  My heart ache and fear consumed me as the past couple of month's worth of anxiety caught up to me in a quick moment.  I glanced at the clock and realized I had to put those fears and feelings aside and have faith that God would protect the thing I hold most dear.  I tried telling myself that the Lord has had a million opportunities to take my baby, and He has chosen to preserve him and give us more time with him.  I do not feel that now is the time for him to leave us.  I wiped my eyes, kissed the rogue tears off my baby's face, and began packing our things.

There is one thing we know really, really well, and that is the drill for surgeries and procedures at Primary's.  We check in at the surgery kiosk. Wierd.  We take a restaurant buzzer.  Even weirder.  And we wait for an uncomfortable amount of time and we watch our hungry child squirm.  My buzzer goes off and I go to the desk to confirm our personal information, like it would change since the last time we were there like a week ago.  I then get a surgery report with the procedure name and doctor's name, which NEVER seems to be accurate.  I circle my concerns, sign the machine giving them permission to do the surgery with the doctor printed on the paper which is never accurate, and agree to the HIPPA laws.  After several squirts of hand sanitizer, I return to the waiting room to wait another long while as my child fusses and complains with all of the other children awaiting surgery.  When our buzzer goes off for the second time it is collected by a nurse as we walk through the clinic doors.  Weighing Jayse on the communal scale is always awkward.  No matter who it is, the nurses all act as thought they've never seen a child connected to tubes before.  They always seem impatient as we try to get our son untangled and stretch his cords from the stroller to the scale to be weighed.  We get taken back to a room where a nurse takes his temp, head size, listens to his lungs and heart, etc.  This is always where I start giving "My son is allergic to tegaderm tape" speech and hand out sheets of mepore tape to everybody and anybody.  I repeat this speech and procedure with the surgery P.A., the surgeons, the anesthesiologists and the surgery nurses.  At this point, I also have a 3x5 card prepared for each one of them with special information about Jayson, his needs, his allergies, and complex conditions.  Yes, I get lots of "This Momma is cray cray" looks, but that's what it takes to get things done right.  I am all about doing my part to ensure there are no mistakes.

We go to yet another waiting room where we waited a very long time because our GI doctor arrived late for surgery.  Our ENT was ready to do the botox injections at the same time.  Our anesthesiologist was incredibly kind hearted this last time, and was really good with Jayson.  Each time we walk our sweet boy to the operating room doors it gets harder.  He gets more and more cognitively aware of what is happening.  He is getting less and less trusting of people in robes and masks.  It is hard to pass your crying boy to a stranger telling him it will be okay, when you're not confident that it will.  For me one of the hardest part is walking down the communal hall to the outpatient surgery waiting room.  Every time the hall looks so empty and my heart is so broken.  I left my baby with professionals, yet strangers, to be put to sleep and often cut open.  I feel so guilty, scared, and unsure.  I hate walking down that hall empty handed.  My baby is never with me in that hallway and my vision is always clouded with tears.

We are well known and honestly well loved in the outpatient surgery waiting room.  They know us by name and save us the best snacks.  We are welcomed with hugs.  We decided to quickly grab some breakfast from the cafeteria.  It was not long after we returned that I saw our GI docs face.  I had just met him a few weeks prior and I could not read his facial expressions.  I had no idea what he was about to say.  He sat down next to us and said, "Piece of cake.  I was done in 5 minutes.  Dr. M is doing his part now with the botox injections.  I'll see you in a follow up in about 4 months and I'll teach you how to switch out the G-tube yourself."  And that was it.  He was gone.  I had to let it sink in a little before I finally let out a huge sigh of relief.  My baby was fine.  We would be taking him home today.  No more nightmares about Peg tubes.  No more nightmares about GI doctors.  This nightmare was over.

I was so excited to see baby J, but wasn't at all prepared for what would happen in the recovery room.  It was only 3 months ago that we were in this very room, but this time was so incredibly different.  I could hear my baby's cry down the hall.  When I got to him, he was pushing the nurses hands away, grabbing onto the hospital bed bars to pull himself up to a sitting position trying to get away.  He was crying and hollering, "Mama.  Mama!"  He saw me and reached for me and practically jumped into my arms where he sniffled and caught his breath but stopped crying.  This would break a typical mother's heart, but not mine.  Yes, I was crying, but in celebration.  In just three months time my son had gotten to the cognitive and developmental level to cry when he's scared, in pain or uncomfortable.  He was showing the nurses he did not approve of them and what they were doing.  He was trying to escape.  He was crying out vocally for his mommy because he cognitively knew she was the person to love and protect him.  And he calmed instantly in my arms.  I don't know many people who could recognize the level of progress in these happenings.  It was monumental.  I held my little man so tight.  I didn't want him to be scared or unhappy, but I was also so proud of his accomplishments.  He had come so far in such little time.  I had to lay him back down as they got him some pain medication and took some vitals.  His fight with them persisted until he could once again return to my arms.  What an unexpected, unanticipated milestone we had reached this day.

After Jayse had calmed down with some more pain medication, we went to another temporary recovery room.  We had a new nurse who said she would prepare us to go home.  We had never been in this recovery area and did not feel very comfortable.  The nurse popped in with the typical, "Do you have any questions before going home?" kind of stuff.  I had a lot of questions.  We had not had a button before or a G-tube before.  I didn't know how to use it to feed, or how to put on the extension.  I did not know how to clean and maintain a button.  I did not know what to do if it pulls out, or what supplies I needed to order from home health.  I didn't know when I could bathe him, or what I could do for pain management.  Unfortunately, our nurse did not know the answers to these questions either.  She tried calling someone who might know, but the number wouldn't go through.  She suggested we attend the G-tube class at the hospital that is held every month.  That would do us no good now, in this situation.  She handed us a G-tube handout and wished us luck.  We felt more than a little intimidated, but I reminded myself that we have been in this position many times and we have always figured it out.

Jayse did very well recovering from his procedure and his tube has been a dream come true.  Honestly.  I have gone from HATING tube feeding and everything about it to thinking that I am no longer in any hurry to get rid of the feeding tube.  His Mic-key G-tube button is so easy to use and maintain.  His site is so much easier to clean.  It hardly affects our lives anymore.  In many ways it makes our lives more simple.  We feel so blessed and are so happy that Jayson finally has a feeding tube that is safe and easy to use so he can continue to grow, develop and progress.