Sunday, February 9, 2014

The Next Chapter

The first week of January, Gavin had his sixth operation, which was a pull-through procedure to reconnect his intestines and close his colostomy.  We spent the night before surgery in the hospital with Gavin while he had a bowel prep and lab work done to make sure his body was ready for surgery.  The surgeon told us the procedure went beautifully.  We knew anesthesiology was going to attempt to take Gavin off the ventilator in the OR in hopes that his surgery in November to remove tonsils and adenoids would have helped with some of the complications he has experienced with anesthesia in the past.

However, the anesthesiologist came to speak with us in the waiting room about half an hour after we spoke with the surgeon.  She said that Gavin was given 1/4 of the sedation he needed for surgery and she had the surgeon use a local anesthetic on Gavin's belly.  But they were still unable to wake him so he was sent to the ICU on the ventilator.  It took more than 8 hours for Gavin to wake up in the ICU.  We had a nurse dedicated to Gavin during the whole process.  She rarely left the room and made sure someone else was in the room if she had to do something else.  At one point, Gavin rapidly turned a deep red color from head to toe.  (Minus all of his scars.  They stood out bright white against the deep red of his body)  All of his monitors started beeping and his temperature was a little over 103.  Within a minute, the ICU doctor was on the phone with surgery and nurses and respiratory therapists surrounded Gavin's bed to care for him.  The response was amazing.  Within an hour, his temperature was back down to normal levels and things began to calm down.

After 8 hours on the ventilator, Gavin was beginning to wake up for longer periods of time, so the ICU doctor, our nurse and a respiratory therapist began the procedure to get Gavin off the vent.  They would turn the flow of oxygen off to see if Gavin would breathe, but his chest just stayed eerily still while the line showing his respirations on a monitor went completely flat.  Then everyone started yelling "Breathe, Gavin!" and that woke him up enough for his chest to rise once with a breath.  Obviously, the decision was made to keep him on the vent because he wasn't able to breathe on his own.  The medical staff would yell "Breathe, Gavin" and I simultaneously yelled, "Plug it back in!" in my head.  Watching his chest lay completely still and hearing the rapid beep on the monitor as his respirations went flat was unnerving to say the least.  This went on for about three or four more cycles over the course of a few hours before he was awake enough to take the vent off and put him on a CPAP machine and finally a nasal cannula.  Needless to say, I slept by his ICU bed all night!

The rest of the recovery had some ups and downs, before Gavin turned a corner and just started healing at a miraculous rate.  He had eight staples in his little belly and a scar that went from one side to the other of his abdomen, but four days post op he was on nothing but Tylenol for pain and discomfort.  He is such an incredible baby!

So the past 15 months has been focused on healing and stabilizing his heart, ostomy (and intestinal) care and lots of physical and occupational therapy.  But it seems like we have made it through those crazy, hard times and we're ready to be on the other side of that hardship.

We are moving on to the next chapter now.  Post-op care for this last surgery involves six months of twice a day dilations for our little man.  That was a surprise, but we're taking it in stride.  It's really not a big deal compared to everything else we've been through.  It certainly isn't placing a feeding tube or changing a colostomy bag!   From there, we'll continue to work with the surgeon, our primary care pediatrician, feeding therapists and nutritionists to figure out life with Hirschsprung's disease and what that means in regards to Gavin's diet and long term care.

He is due for a repeat sleep study to see if his severely obstructed sleep apnea was corrected with surgery.  Hopefully, we will see a dramatic difference in his results.  If not, we will work with both his ENT and cardiologist to find a way ahead and explore as many options as possible to avoid surgery but control the effects prolonged apnea may have on his body.

Pressure is building in the right chamber of Gavin's heart.  There is a significant amount of leaking around his pulmonary valve.  We weren't prepared to hear this, but it is a normal progression of his heart condition.  The speed of the progression isn't normal, but the symptoms are.  In six months, Gavin will return to the cath lab.  Our hope is that repeat cath care will prolong the need for surgical intervention and control the rate that pressure is building in his right chamber.  The cardiologist is certain Gavin will still require a stent, but he is going to do everything possible to make sure that Gavin is older, bigger and stronger before that has to be done.  But, it all depends on how Gavin's heart responds to other treatments.  I was honestly expecting to hear that everything looked the same as it did at his last echo which was in October.  This news floored me and I'm still wrapping my head around it.  It's a part of life with a cardiac kid, but I guess the "bad" news is never something you get used to.

The good news is Gavin IS bigger and stronger and healthier.  He's been progressing so much since his last operation.  He is such a happy, cuddly baby who inspires love and joy in so many.  I love this little boy more than life, and we have been forever changed by this little blessing.  No matter what hardships, obstacles or uncertainties come our way, I know that we will weather the storm.  This next chapter holds so many unknowns and we have no guarantees how things will turn out, but we were in this position 15 months ago and today we have a miracle who has changed our world for the better. 

Thank you again for everyone who has kept our family in your thoughts and prayers.  Your strength and encouragement continues to help us on our journey and give us hope when our hearts are weary.