Update on Max 6/9/11

Max is scheduled to have a bronchoscopy tomorrow.  To date he has had two previous bronchus, both of which helped successfully extubate him, and that is what we are hoping for this time as well.

Back story:  Max was born 3/22/11.  On 3/24/11 he was sent to Children's Mercy Hospital in Kansas City, MO.  There it was discovered that he had two holes in his heart a VSD (ventricular septum deviation) and an ASD (atrial septum deviation).  At the time, neither seemed to be immediately life threatening, and they planned to due surgery to close the holes between 6 months-12 months of age.

He did have trouble breathing due to fluid on his lungs caused by the VSD.  The VSD allowed extra oxygenated blood from his left ventricle to flow to his right ventricle and then into the lungs mixing with the de-oxygenated blood.  They managed this with Lasix, a diuretic drug, and then two other meds, Dijoxin and Captopril to make his heart function more efficiently.  He also had "spells" in which he would hold his breath and turn blue, his O2 saturation would drop along with his heart rate.  These were usually due to agitation, and the nurses learned to just leave him alone and he would usually come back out of it.  Max became famous around the NICU for these little spells!

The big issue keeping us in the NICU was feeding.  He simply didn't have the energy needed to take a full bottle.  We eventually had a g-tube put in place to allow safe feedings at home.  A G-tube is a feeding tube that goes directly to his stomach.  The operation went fine and the G-tube was safely in place, however he failed extubation afterwards.  They had to re-intubate him and tried a round of steroids, again failing extubation.  Eventually the Ear, Nose, and Throat doctors got involved and found granulation tissue, presumably caused by the initial intubation.  They removed this and started him on more steroids, along with some pain meeds which he became addicted too.  They actually had to give him methadone, the drug used for heroine and Meth addicts to deal with his withdrawals, my little junkie!  This worked for a while, and he was able to get the breathing tube out, but only for two weeks or so.  Right about the time they were discussing discharge with us, he had to be intubated again, due to obstructed airways.  This intubation was rather traumatic in that it took 10 tries (yes 10!) to get him intubated.   ENT went back in, found a raw area in his airway and thought that a scab had been knocked loose during the intubation process.  After this he was again put on a longer regimen of steroids and was successfully extubated!  Phew!

During the Bronch they also noted that his trachea curved.  An Angiogram showed that his Aorta was pushing on the trachea, but it didn't cause any compression of the trachea to block the airway.  They decided that at the time of surgery, if it was causing and issue they would move the aorta out of the way. The steroid regime caused problems of it's own.  The muscles of his left ventricle became enlarged due to the steroids, so all the steroids were weaned off.  They also stopped his Dijoxin and Captopril at this time.

Max did well after this, he started gaining weight, was being weaned off his O2, and his pain meeds, and once again they were talking about discharge!  Apparently Max had different plans, that did not include going home.  The very next day he had one of his typical breath holding spells that resulted in him passing out!  Mommy and the Nurse, Emily, nearly had a heart attack!  It was horrible to see your baby turn blue and go limp in your arms.  Cardiology got involved again, the wonderful nurse practitioner Linda, made phone calls from home all weekend.  The Cardiologist, Dr. Drake, did an echo and saw that  the VSD was allowing more blood to his lungs than initially thought, and the muscle in the left side of his ventricle was larger than they thought, causing a blockage to his mitral valve.

They did a heart cath to take measurements and pressures to see how his heart was functioning.  From this, they determined that his heart was pumping 4-9 times more blood than it should be, due to all of the extra blood flowing to his lungs.  The decided to go ahead and fix his heart.  He was intubated for the heart cath, and failed miserable during that extubation.  Since the previous intubation took 10 tries, and I found that ridiculous I had vowed to NEVER leave him for an intubation process.  So when they had to re-intubate him, I was standing right there.  This time it only took 3 tries, but he coded and they had to perform chest compressions and give him epinephrine to get his heart rate up.  I think this took about 5 years off of my lifespan.  But it was decided that rather than putting him through the stress of extubation and intubation again, he would just stay intubated until his surgery

His heart surgery was scheduled on 6/2/11 at noon.  Doug and I arrived at the hospital around 7am to get to spend extra time with him and try to hold him.  Holding him during intubation

But, thankfully God watched over our boy, his surgery was successful, and by 5 that evening we were back with him.  We had wonderful support from our family, Doug's parent's and brothers were here.  One set of my parents were here, and Gunner and Makayla were with us as well.  He did fantastic after his surgery.  Had a few spells of arrhythmia on day 3 post-op, but that was managed with meds and hasn't returned yet.  They performed an echo and said his heart function looked great.  There is still one small VSD, but it is so small it couldn't have been fixed in surgery and they don't anticipate that it would cause him any issues.  They only did a partial close on the ASD, to allow it to act as a "pop off valve" with high pressures, and it looks fine as well.

So now we are on to our next hurtle....the extubation.  ENT is going to take him back into the OR and do another bronch to immediately address any swelling or obstruction.  Hopefully this will be successful and we will be on our way home soon.