Family and Friends

As parents you get into a rhythm and the new crazy can become the norm.  Of course you travel to Peoria every couple of weeks.  "C" would normally be this whiny right?  And all the other un-sensed stresses of something very different.  

I think my wife and I would be quite a bit more insane if not for our family in Peoria to watch the other kids when they are along for fills and to have lunch ready after appointments.  It's great to have that time together after needles and extra scalp pressure.  "C" still prefers to not be in the van.  

Our Quest Church family has been big support with prayers and dinner on fill days when things are just crazy enough where, "we might just have peanuts and yogurt for supper tonight".

Thank you! We love you all.  

Tissue Expansion Four

Fill number 4 went well.  My wife is taking him for the appointment solo now.  It is starting to get noticeably large.  

Tissue Expansion Three

Similar to fill #2.  Now up to 35 cubic centimeters in front and 140 in back.

After fill three

Tissue Expansion Two

This time C knows what's up and he not happy to be at the doctor.  Another good reason for us as parents to not do the injections at home.  It is possible and would save gas and money, but the negative stigma of a place and person is unavoidable.  So let the doctor and the office be the bad place, keep home out of it.  Now total 20 cc's in front and 70 in back.

After second fill

Commencing Expansion

Today is the first expansion procedure.  A little nervous.  It has been explained to us that saline solution will be injected via the ports under C's skin into the expansion balloons.  The doctor will know when to stop by the discomfort he shows.  The discomfort is a necessary part of the process and is momentary.

After fill #1

The injection went better than anticipated. I had to hold C immobilized cradled against my chest.  The doctor used two larger syringes to fill both at the same time.  C cried when the needles went in, screamed when he felt pressure.  Injection stopped, the needles came out, C sat up and was done crying in about 3 seconds.  We waited a few minutes to observe and make sure everything would be okay.  To C it was almost like nothing had happened.  They got in 10 cubic centimeters in the front and about 20 in back.  We'll be back in 2 weeks.  

After Surgery #1

Recovery and pain management lasted about 2 days.  After day two at home he was totally off Tylenol.  The new challenge was that he was teething at the same time, so he had discomfort there which made it tough to grasp why he would be crying.  We tried to ditch the Tylenol with codeine as soon as possible and stick with ibuprofen or or low dose Tylenol.

Full healing of the stitches took about 3 weeks and there was bruising that set in lasting about 4 days after the surgery.

Day 1 after surgery in hospital

Day 2 

Day 3

Day 4

Day 6

Day 16

The swelling has gone down enough by day 16 that you can start seeing the insertion ports that look like two quarter sized bumps under the mole.  The balloon expanders are back and above his ear and in his forehead straight above his nose in the day 16 picture.  The balloons are under the skin and will be expanded to increase non-mole skin surface area.

Surgery One

Surgery day is here.  It is an outpatient procedure that comes with a one night recommended stay for pain management. Tues - travel and get ready, Wed - surgery, Thurs - recover.

Pre-Surgery

When the nurse tells you the rules and your child is not to eat 8 hours before the surgery make sure to err on the long side.  We learned the hard way....

Our surgery time was at 12pm (noon). It got delayed to 3pm due to the food error (eating within the 8 hours) and the appointment ahead of that ran late so surgery didn't begin until 4pm.  We had checked in at 9:30 and were up at 5:00.  Long day in a waiting room.....We will do it differently next time.

The procedure to install the expansion balloons took two hours and went easier then expected.  That two hours in the surgery waiting room is like six.  You cannot wait to be done, but you know that first day is going to be hard.  We got called to the recovery room a little after 6pm.  "C" was doing great for his part!  He was laying in a little infant bed and immediately wanted me to hold him when I arrived.  Only one parent can go into the recovery room so I went because my wife was spending the night with him.  This was my chance to have some time with the little guy.   I got to feed him Enfamil out of a bottle to keep him hydrated.  Here's a kid that never touched a bottle, now drinking from a bottle.

The tangible response of relaxation that "C" had when I held him was awesome.  He was in pain and around strangers, crying, the nurses were attempting to comforting him.  I picked him up (monitor wires, IV and all) and sat down in the rocker and *sigh* he stopped crying and breathed deeply with a little moan per breath, then he slept a bit.  Maybe it was the narcotics they just gave him, but I think otherwise. ;)         

A little after 6:15 we were released from recovery and sent to a low intensity recovery unit.  Pain management was the main objective at this point.  About every 45 minutes, and on cue by "C", we were able to give him something to keep it reasonable.

Post Surgery

As an elective surgery this was a moment where big picture focus was needed to keep it all together.   Poor guy.