Post Glenn: Day 6
Ah, my little Justin. He truly is full of surprises. Since the last time I posted, he has hit a few rough patches on the road to recovery.
Two Steps Forward, One Step Back
Justin’s physical appearance matches that of a boxer. He looks like he’s gotten into some terrible fight.
Day 3:
Bruised Eye
Huh? Where did this come from? Seemingly out of nowhere, Justin developed a black eye on his right. This has left all the doctors quite baffled. However, the theory is Justin’s coaugulation issues may have something to do with it. When his blood clotting ability is compromised, he has the tendency to develop more bruises, according to the doctors and nurses.
Respiratory Infection: Pneumonia or Bronchitis or Something
Loi was holding Justin for the first time in over a week when Justin’s lungs seemed to give out as he started taking in deep sucks of air. Loi could see Justin’s rib cage as he struggled to breathe in and out.
Justin was re-intubated to allow his lungs to recover. Before doing so, the attending physician peeked down Justin’s airway to find copious amounts of “gunky, gross goop”. There was no other way to describe it, according to her. A culture was sent out to find if Justin did in fact develop any sort of infection.
Day 4:
Signs of Infection
All signs in his blood work this morning showed that Justin did develop some sort of infection. The cultures did grow some “rods”, but the type of bacteria is yet to be determined.
Gassiness=Crying
Justin passed a lot of stool and gas, and cried in agony every single time. Tried Mylicon, but to no avail. We pretty much just have to wait it out.
Pneumothorax
In the process of being re-intubated, the team had to “bag” him, pushing oxygen into his lungs. One of the side of the effects is developing a pneumothorax where air that escapes from the ruptured lung gets trapped in between the chest cavity and skin. The nurse and I saw the asymmetry in Justin’s belly, and felt some crunchiness from that area–signs of the problem.
Day 5:
Chest tube goes back in…
To drain the air.
I walked in early morning to find the surgical fellow with a mask on and Justin draped. He quickly explained that the pneumothorax had gotten “bigger” which would hinder Justin’s extubation. The chest tube would be the best solution, according to him. I agreed, stepped outside, and waited for 10 minutes before he completed his task.
The remainder of the day was full of coughing and suctioning. Whatever bacterial infection Justin has has caused him to develop disgusting, thick, yellow to red phlegm. The nurses had to suction him every hour, or as he coughed to clear his airway. The kid hates it, and cries murderously (or so I imagine from the looks for his scrunched, red face), every time.
His eyes were either rolling to the side or to the back of his head. His left hand was always clenched in a tight fist, while his left foot twitched uncontrollably. He looked like a nervous wreck…side effects of the narcotics, possibly? Argh.
Day 6:
Still intubated, but recovering and stable…
Less coughing and phlegm today, thank goodness. He is much more alert because the drugs finally wore off. I finally got to see my baby again, with his piercing brown eyes. For the first time in over a week, my Justin made eye contact with me, and listened intently as I sang to him:
You are my sunshine, my only sunshine/You make me Happy when clouds are grey/You don’t know how much, how much I love you/So, please don’t take my sunshine away.
And, I caught him watching tennis on the TV in his room. Rattling toys, tinkling mobile, and glowing, musical animals couldn’t calm him for the 10 minutes I had been trying. Then, sudden silence. I followed his gaze to the tube. Loi caught him doing this the previous night and turned off the TV. Couch potato in the making…not if we can help it!
The attending and surgeons discussed possible extubation tomorrow if the night goes well. I’m praying that it will.
This is Our Story
Justin is amazing, isn’t he? Goes to show, children are resilient creatures.
I had often been told this while pregnant, and immediately following Justin’s first surgery. And, I suppose, I had this false sense of reality where everything was going to be OK, like one day, he was miraculously going to recover and heart disease would not be a part of him anymore. And, I looked forward to the day when all of his suffering would be a distant memory, never to be conjured up again. I looked to those stories of children who are living with CHD, hopeful that my Justin will one day have a normal, happy life. I relied on medical advancement to continually prolong his life like it was a for sure thing.
True reality is: heart disease will always be a part of Justin and his path is never certain. I am always hopeful that the future will hold many things beautiful and possible for Justin. But, again, I never take for granted what I have today. Each day that I have with him, even if it seemingly is one of our worst days, I appreciate his breathing body and working brain, the chance to hold him and kiss him.
Moms of CHD children to be, no amount of research will ever prepare you for the adventure your little one will take you on. No story will ever compare to the one you will share with your child. Let’s face it: your child is unique. Even if you find another child with the same diagnosis as your child’s, the journey will never compare. Embrace this, moms, and you will be greatly rewarded.
Although our story with Justin is extraordinary, it contrarily emphasizes the ordinary.
The constant theme of every entry is to appreciate each day as it comes, take it one day at a time, take one step in front of the other. Truly, we live each day for that day. I will not think of 5 to 10 years down the line because really, who knows what is going to happen. It is hopeful to think of the future, and plan for the future, but we are constantly reminded to never take for granted what we have today.
We are reminded to appreciate things that we may have otherwise taken for granted: our children, family, friends, health, freedom, food. Being in the hospital, away from home for weeks at a time, eating cafeteria food, bound to a small ICU room, unable to hold my baby without lines and tubes tugging on him, not having all four of us together really, really puts things into perspective.
We do not push through each day just so that we can just get through that day, hoping tomorrow will be better. We live for that day, and appreciate all that God gives us. Because, we know, tomorrow is no guarantee.
So, go ahead, everyone, make your own story. Leave your mark in this world with such profound impact that your legacy will carry on. Justin has and will continue to do so. Proud Mama? You betcha.
January 24th, 2008 at 10:03 am
Proud Mama–you have every reason to be proud as can be. As always, prayers and thoughts go with you from us.
Nikki and Daniel
January 24th, 2008 at 10:31 am
What you say is so very true. When our daughter was born with CHD and we found out she had to have the 3 staged surgery, I looked everywhere for stories that would give me hope. Then a wise nurse sat me down and told me that, although I could look for those stories to give me hope, the truth of the matter is is that every child with CHD is different. Every outcome is different, every recovery from surgery is different. And that helps me now as we navigate down this new road. Each child with CHD is a trailblazer all on their own. And Justin is in the process of blazing his own unique trail.
Day 6 brought tears to my eyes. When Jilly was recovering from her 1st surgery and waiting for her Glen, I used to sing “you are my sunshine to her”. It was the only thing that soothed her. And now, almost 4 years later, she is still soothed by that song when I sing it to her.
I continue to hope that Justin keeps moving forward in his recovery and that you continue to be a strong, proud mama.
Dina
January 24th, 2008 at 2:39 pm
Still praying. The Glenn is a difficult transition for these little ones and complications are pretty “normal” - but gosh, I’m sorry Justin is having them. And yes, you’ve got it right — and this doesn’t change even post-fontan and years after everything is going great — each day with our chd children is its own gift.
When people give me a strangely sad look about that, I like to remind them that it’s really true of our “healthy” children too. It’s just that our chd kids give us more opportunities to remember this.
January 25th, 2008 at 11:50 am
I hope Justin is feeling better today. I was sorry to hear about the setbacks but you must always expect the road to be bumpy. I so admire your spirit and perspective. I know Justin is doing the work of healing and coping with all this but you are doing so much to help and him. You are inspiring.
January 26th, 2008 at 3:28 am
Thinking of you guys; you’re all so amazing.
Love,
Yvonne
January 28th, 2008 at 8:04 am
Beautifully said, Proud Mama!
January 28th, 2008 at 9:21 pm
Jen - I read you were singing “You Are My Sunshine” to Justin. I sang that to Logan all the time when we were in the hospital for each of his three surgeries. Then, I saw above that Dina sang the same song her her child. (Logan has the words to the song framed in his room.)
Our miraculous children with CHD truly are “Sunshine” to all who have the opportunity to meet them and be inspired by them. I think it probably soothes us as much as the little ones.
Keep singing, praying and believing in miracles. They do happen!
Love to the whole family,
Marsha
January 31st, 2008 at 9:14 pm
i hope justin is ok