Monday, November 7, 2011

Worst & Best Day of My Life

We've all heard the saying that, once you have a child, your heart walks around outside of your body. Three weeks ago the enormity of this saying hit me in a way that I was wholly unprepared for. To understand the ending, a sweet loving toddler who is safely sound asleep, we must start at the beginning of the journey - which began when my wee one was not quite six weeks old.

Hayden at 6 weeks - first ear infection

Fast forward to July 13th, 2010 and we are in the waiting room having his first set of tubes put in at the tender age of 6.5 months old. The surgery was uneventful and recovery a breeze.

Fast forward to June of 2011 and Hayden (WITH tubes) has had seven ear infections in an eleven month time frame. We're at the ENT and are NOT seeing our regular doctor, as he takes approximately (no lie) 3-4 months to get an appointment with and Hayden doesn't have one with him until the end of June. The resident that we see is super nice and I explain my concerns: the multiple ear infections, chronic congestion and runny nose, the snoring, the "flip top" head while he sleeps, the NOT sleeping through the night. Yes, we answer to his questions. We have tried: saline drops, cool mist humidifier, deep carpet cleaning, cleaning the air ducts, allergy testing, a fan, elevated mattress, Vicks Baby Rub, Vicks Plug Ins, air purifier. I tell him that I REALLY think it's his adenoid blocking his airway while he sleeps. He agrees. THEN, enter Dr. A*Hole, the attending. He dismisses the thought that it could be his adenoid and insists it's silent reflux and prescribes Zantac. We let him drink too much milk and coddle him too much he states as gives us a list of foods for Hayden's new reflux-friendly diet.

A month later, we go in to see Dr. D, our regular ENT. I explain that I think Dr. A*Hole is wrong. The medicine is not making a difference in the pattern of behavior we are seeing. What should we do? He suggests a wait and see approach and recommends we come back at the beginning of October and re-evaluate. Hayden passed all of his hearing tests, so, in that respect, he seems fine and is hitting all of his developmental milestones right on schedule, so our doctor isn't overly concerned.

October 2011: It's a Tuesday and we're back for our follow up appointment. The Zantac and adjusted diet is STILL not making any difference in how Hayden sleeps. He still DOESN'T sleep through the night and has all the same issues. I tell the nurse that I REALLY think it's his adenoid and I'm frustrated that no one will listen to me. I ask her what our options are to see if I'm right. It's either a sleep study or xray. We decide on the xray, as we'll have an immediate answer and, seriously, the kid DOES NOT sleep through the night so I'm not sure what good a SLEEP study would do since I doubt he would actually, you know, sleep. A half hour later...the xray is complete. Dr. D comes in and pulls up Hayden's xray.'s definitely his adenoid. It's blocking 98% of his nasal passage and the Doctor is surprised at the enormity of the blockage given how Hayden continues to grow and thrive. He has an opening for surgery on Friday at the Children's satellite surgery center. We can remove the adenoid and put in new tubes, since his left one has been blocked for the past six months.

Two Days Later: Chip picks Hayden up from school and the lil' guy proceeds to get sick on him at home. When I get home from work, I get the same treatment four times. I call the surgery center and they direct us to still bring him in. We take him in and he has a 101 fever. Of course, surgery is a no go. Dr. D looks in his ears and SURPRISE - a nasty ear infection. We leave with a mega dose of antibiotics and a miserably sick little guy. Hayden's surgery is rescheduled for 10 days later to make sure he has enough time to recuperate and get better.

A week later: I wake up in the middle of the night as I hear what sounds like Hayden gasping for air over the monitor. I lay down with him in the guest bed and his breathing seems to even out, so I chalk it up to me hearing something weird or dreaming something strange. Still, the next day, I mention it to his teacher when I drop him off at school. When I call to check on him at nap time, she mentions she noticed it too. I call the ENT and they direct us to the ER at the Children's Hospital. We end up staying overnight for observation and the monitors don't pick up anything too bad. His heart rate and pulse ox drop, but the alarm goes off and he recovers. I have a Momma Bear moment with the on-call ENT about my concerns with Hayden's breathing and frustration when they try to discharge us. I want my baby better and I only trust Dr. D. I refuse to leave until the on-call ENT talks to Dr. D and tells us the plan and what's going on to make Hayden breath so strangely. Dr. D decides to postpone surgery until the next Wednesday so it can be done AT the hospital and to give Hayden more time to recover from whatever virus made him so sick and possibly caused the breathing issues he's having. He directs us that Hayden is to stay out of school until surgery and he wants him to get as much fresh air as possible to help make his lungs stronger. Dr. D explains that Hayden will have new tubes put in, his adenoid removed, but also will have a scope done to see what's going on with his breathing, as well as biopsy of his esophagus, washing of his lungs and a possible removal of his tonsils (depending on what he sees during surgery). Note to self: beware when you Google this as really... it's intimidating and scary stuff. However, we have to do what's best for Hayden and I have to be prepared and know what the doctor will be doing.

The next Wednesday: I am a wreck. I'm scared. I pray. Our sweet baby is having several scary sounding procedures. I'm swamped at work and nervous I look like a slacker since I've been out a week and have only been intermittently checking email. I curse myself for giving a crap about work right now and let it go. Hayden needs me to be strong right now. We play with Hayden and the anesthesiologist comes in and reviews the dangers of sedation and intubation. He reviews what will happen during each step of the procedure. We pray. They give Hayden some happy juice and we walk him to the OR doors. We kiss him, hug him and tell him the doctors will take great care of him and we'll see him in a minute.

We expect the procedure to take about 30 minutes to an hour. I watch his ID number on the board - PreOp it says and then it updates 10 minutes later to Surgery. We drink coffee - I try to read a magazine, to Facebook, to count tiles in the ceiling. FINALLY - Dr. D comes in and says that the surgery was perfect. He's amazed at how well Hayden had been compensating all this time. His tonsils were literally touching when he breathed in. He had to remove them, as well as his adenoid. Hayden had one of the worst cases he had ever seen for someone so young. After the two week recovery process, we should have a new kid! Dr. D said that we were right. He apologized for not listening to my mother's intuition sooner and praised us for not giving up and speaking up when we knew in our hearts something was wrong. Hayden most definitely had a severe case of sleep apnea (hence the gasping) and did NOT have reflux. Dr. D said that we would be able to see our baby in about 10 minutes.

30 minutes later...we're starting to get concerned. Did they forget about us? The board still says Post Op. I'm pacing and praying and praying and pacing. I go outside in the hall and see the anesthesiologist walk by and look at me. I follow him into the waiting room. He motions me over and tells me to get Chip and get our stuff and come to the conference room. We won't be coming back to the waiting room, he tells us. I'm confused and anxious. My heart is literally in my throat and I'm about to puke. "He's okay," he starts, "but...." My ears start ringing. Chip literally has to hold me down in my seat as I start crying and saying, "I want to see my baby, NOW!" Somehow, I pull it together to hear what he has to say. The doctor tells us that the surgery went perfect. Recovery was going perfect. Then...20 minutes after the surgery, Hayden stopped breathing. They have to intubate and bag him and it took a few minutes for him to recover enough to breath on his own. He had only not had oxygen for a few seconds, as there was a nurse right beside his bed every second. He reassured us that this happened occasionally and they knew how to handle it. Hayden was crying now and he would take us to go see him. The walk to the recovery room was the longest of my life.

In the recovery room... it was wonderful to see Hayden awake and okay. It was awful to see him looking so NOT like himself. Nothing can prepare you for the sight of your child hooked to monitors. He has wires and cast-looking things around both arms to keep him from pulling anything out. There is also this terrible, green thing (nasal trumpet) sticking out of his nose. He's so tiny! I am holding it together, but barely. It's like I'm watching myself through a window. Hayden sees me and the nurses give him to me. I practically rip him from their arms. I sit and rock him and start singing as tears roll silently down my cheeks. I'm praising God that he's here, he's okay, he's breathing. Even as I hold him, Hayden's pulse ox keeps dropping...he'll relax and try to fall asleep, then he stops breathing. We have to tickle him and make him cry to get him to start again. Finally, after an hour, we are able to remove the "blow by" oxygen and I can just hold him and rock him and love him. He settles down and his vitals start to stabilize. We'll be staying the night in the PICU they tell us...Honestly, there's nowhere else I wanted to be at that moment. I'm still so scared. As I sit in recovery and continue to rock Hayden, I realize that God planned all of this. He knew this is where we needed to be for his surgery. If we had been at the surgery center, we would have had to been CareFlighted to the hospital. He knew what He was doing.

Even now, as I type this, I am overwhelmed. I still need to write thank you notes to the nurses and staff at the hospital. I don't know what to say, especially to the recovery nurse. How do you properly thank someone for literally saving your child's life? A superhero cape? A million dollars? My eternal gratitude? We know what this happened - the intubation tube from surgery was removed when he was under too deep of sedation. It caused his airway to freeze up (similar to the response a child has when they fall in the water). They had to give him a shot to "unfreeze" the muscles so that they could intubate him. I saw the little instrument they used to intubate my son. I saw the bag they used to breath life and air back into his lungs. The memories of those moments are forever burned in my mind.

Right now, yea, I am probably a helicopter parent and probably let Hayden get away with more than I should. There's so many lessons learned from October 19, 2011. I will go into them later, but, suffice it to say that Chip and I were forever changed on that day. We left the hospital stronger and closer than ever. We learned who our true friends are. We learned that family and friends will move Heaven and Earth to help you. We were reminded of what really matters...