There is nothing worse in this world than to see your child in pain and be powerless to help them, or to find the words to explain why. "It's just the way God made you" doesn't cut it for a 16 month old. Let's be honest here, sometimes it doesn't cut it for this 35 year old. There are only so many things you can do or say to comfort a baby who has been through surgery. Endless rocking, soothing words whispered into their hair, a gentle hand stroking their back. For every spoken word, there are 100 questions. "Why MY baby?" "What did I do wrong?" "Will he have to watch his babies suffer like this?"... it's endless. And painful. And futile. But I digress. Pain is only part of the story, and today is a day of healing.
Day 1 - Surgery Day - June 23rd, 2010 12:24 AM
I am in bed, we have to be up in 4 hours to take Liam to the hospital. There's no way I can sleep. I am playing countless games of Rummy 500 on my phone until my eyelids close involuntarily. I am praying for sleep so that I can be a mother in the morning. What I get is a mix of bad dreams and tangled sheets. When Bill's alarm goes off at 5 I think he's going to work until the lead ball hits me in the chest. I feign sleep until I can't anymore and am forced into the shower. We get Liam ready, lock up and leave for the hospital. I am thinking how happy I am to have a husband that loves me enough to know I need support today, even though he himself is suffering. I am thinking about anything I can to NOT think about the hand-off.
We check in at the hospital and are called back to the surgical holding area almost immediately. Liam and I sit and read his favorite book and the nurse brings him some toys, which he promptly turns into projectiles for Daddy to chase all over the room. After he gets his ET toe (oxygen sensor) they take us to another holding area where the anesthesiologist is talking to us and asking if we have any questions. I ask a question about his post-surgical pain management but what I really want to do is tell him about what a funny, bright and mischivous boy our Liam is, and how he has reunited family members and healed the broken hearts of a family left behind and how he was sent from Heaven to us to be a reminder that life does indeed go on. I want him to know that he is was a wonderful, surprising and blessed gift to us, his parents, and to treat him with the utmost of care and respect... but I just have to pray that his hands will be guided by a higher power and I have to let go and trust.
Too soon it is time to walk away and leave him at the kissing corner, knowing he is surrounded by capable people and the prayers of everyone who knows him. Only a parent who has walked that path knows the heartache we felt at that moment. Leaving our smiling, happy, trusting baby - knowing that when he wakes up he will be in pain that cannot be explained, surrounded by faces he doesn't know. All we can do is walk away and pray that his angels will hold him until we can be reunited.
The minutes pass like hours. Nikki and Ava arrive and are a welcome distraction. My Mom arrives with tales of chasing dogs down a dirt road in her golf cart at 6 AM. The laughter that ensues lifts my spirits and before I know it the first surgeon, the ENT, is in the waiting room telling us that his tubes are in and Dr. Semba is with him... and he's doing great. It's a huge relief to see and talk to someone who has seen him and knows he is alright and I can breathe a little.
More time passes, maybe it's a half an hour, maybe it's 2, and Dr. Semba is in the waiting room. I can't reach her fast enough, I just want to know he's ok. I just want to hear that I can see him and touch him and feel for myself that he's ok. She explains his recovery, she answers our questions and reassures us that everything went as planned and he'll be in recovery waiting for us soon. When she leaves, we go back to our seats and wait some more.
A nurse is calling our names, only one of us can go back and I don't even wait to debate who it will be, although I feel an intense guilt that burns me to the quick, I go and leave Bill to wait some more. I have to see him. I have to touch him with my own hands and comfort him as best I can. It has to be me.
She leads me back to the recovery area, to the very last curtain, where I can hear his cries. I pull back the curtain and see my baby who doesn't understand the why's or the how's crying in the weakest, most pitiful cry and I am rendered completely helpless. I stand at the foot of the bed and sob, the pain being swept up from the deepest recess of my being, having been kept hidden since the day we discovered this path. I climb into bed with him and wrap my arms around him and do the only thing I know. Love my child. Love him. Comfort him. I sang Old MacDOnald until I ran out of animals. I sang it again. They pumped morphine into him at regular intervals. I kept singing. We both kept crying.
At some point they determined he was stable enough to move to a regular room and we met Bill in the hall. I could see the relief and sadness on his face and it was still so comforting to just have him there. Once we were in the room, we were able to rock him in a rocking chair and after 5 doses of morphine he was finally able to rest. He slept on and off in the rocking chair with us, and later, next to me in the bed and at 6 AM the next morning he was taken off of the morphine. He was started on Tylenol with Codeine with an apple juice chaser (to stop the burn) and did well on that. His fever, which we were told was normal and due to micro-aspirations during surgery, came and went.
All morning he was lethargic and grouchy and we were pretty convinced we would be spending another night at the hospital... but again he surprised us. Seemingly out of the blue, at noon, he ate a half of a container of yogurt, some apple sauce and chocolate pudding followed by some juice. He discovered he could make us laugh and clap if he threw an egg filled with beads. Our laughter made HIM laugh, and his laughter filled us with hope and joy. He began doing so much better that by 3 PM they started the discharge process and by 4 PM we were... headed home!
Angels (Aunt Sherry, then Erin and Don) bring us food so we don't have to think about cooking, and we settle in to see where the night is going to go.
That night we slept on the couch and we were up by 5 AM.
Day 3 - June 25th, 2010 - First full day at home
Time is irrelevant and punctuated with dosing schedules and unproductive feeding attempts. Pediasure becomes the food of choice. Everything that was opened and rejected throughout the day goes into the blender at 5 PM and becomes a "smoothie". He is sleeping 45 minutes at a time and is not very happy when he's awake. We are spending a lot of time in the rocking chair.
Day 4 - June 26th, 2010
Still grouchy, still rocking, still watching the clock for the 4 hour dosing intervals. It's strangely comforting as it's the only thing that we have control over.
Day 5 - June 27th, 2010 - Codeine is NOT Liam's friend
Liam wakes up at 5 AM and starts to rock immediately. He sits up against the back of the couch and rocks back onto it with force - continuously.
By noon, I'm thinking he has to be getting tired, but the rocking doesn't stop. He starts to fall asleep sitting up but jerks awake and begins to rock again. Papa Butch arrives from Sterling and while initially grouchy, Liam finally settles into his arms in the rocking chair and sleeps for half an hour. He wakes up and begins to rock again. Papa thinks it might be the codeine and I'm getting a nagging suspicion that he's right. The rocking continues until 10 PM when Liam finally succumbs to sleep.
Day 6 - June 28th, 2010 - Just plain Tylenol
I decide to reduce the codeine Liam is getting to 1/4 of the dose and he is instantly better. The rocking is still going on, but he's able to sleep throughout the day and seems to be in a better mood altogether. We are going through Pediasure like it's going out of style. He is refusing all solids.
Day 7 - June 29th, 2010 - Finally eating
Liam is doing better on the reduced codeine and is walking around for longer periods. He's still pretty tired, he's not eating solids yet, but his mood is visibly improved, as is mine! He is sleeping about 5 hours at night and taking an hour to 2 hour nap in the afternoon. Although the schedule isn't what it was, it's still getting back to some semblance of normal.
Day 8 - June 30th, 2010 - Off to the park!
Liam starts eating solids again. Albeit Stage 1, but solids, nonetheless! I figure out that if I sit in front of him on the ottoman and let him take short breaks in between bites, he will finish the entire thing. We are going broke on Pediasure.
Day 9 - July 1st, 2010
Liam is completely off of Codeine and is doing great on a reduced schedule of plain Tylenol. He is eating more solids and is getting back to himself more and more every day. He is interacting with the kids and even running around for a little bit! He takes a long nap and I am able to put away 2 weeks worth of laundry and clean the upstairs. When Bill comes home from work, Liam's Pack N Play is not in the living room anymore... Liam slept in his own room tonight... and so did Mommy! We both slept clear through the night in our own beds.
Day 10 - July 2nd, 2010 - Aunt Cait comes to visit
Liam has a great day playing with Aunt Cait and going for a walk outside. He takes a late nap and sleep for 3 hours! I came home to a fridge full of half-eaten everything, but into the blender it went that night. I think if I ever smell Pediasure again it will be too soon.
Day 11 - July 3rd, 2010 - Party at Great Aunt Sheila's!
Liam's first day with no pain meds... and he does great! He spends the entire afternoon running around Great Aunt Sheila's and Uncle Joe's backyard, playing with his cousins and eating baby food peaches and Pediasure (gag). He falls asleep a happy boy and I go to bed thanking God for healing our baby so quickly.
Day 12 - July 4th, 2010 - Happy 4th of July!!
We spend a wonderful day outdoors, grilling and enjoying one another's company. The pain and uncertainty are fading and we are starting to feel like a normal family again. The extra sleep definitely helps!
Day 13 - July 5th, 2010 - Today
Fitting that I should be writing this today, the 13th day of this particular journey. Liam is almost completely back to normal. He'd beg to differ, I'm sure, because he's just about had it with pureed whatnot and what he'd really like is whatever it is WE are eating, but he's healing. His mouth looks like the aftermath of a warzone, but he's getting better every day. He's being a little silly. A little playful, a little naughty. Bill is finally again finding 17 new tabs opened on his laptop when he walks out of the room for a second. I am again picking up 216 separated wipes from the family room floor. I am plucking cloth diapers from the powder room toilet and keys from the trash. We are thrilled to be doing so.
We never would have chosen this for our son. We wouldn't choose this for ANYONE'S child. It has taken some time but I'm reaching a point where I'm not so angry. I still have questions, but someday, I know, they'll be answered and I will finally understand. Liam is a gift, he was sent to us for a reason and he will live a long purposeful life surrounded by the love of family and guided by the angels who knew him first. My job in this is to love him unconditionally, to teach him to be loving and faithful and when all else fails, to curl around him and sing until I have no voice.
Jessica,
ReplyDeleteThank you for posting your journey....once again, you've made me cry. I'm happy to hear Liam is doing so well and healing so quickly. Babies amaze me.
Suzanne Faler