My son was born in October of 2002 with a syndrome that caused him to have an underdeveloped right ear, two holes in his heart, and a tiny, narrow trachea.  Loma Linda physicians failed to identify his tracheal defect, despite our panicked insistence that he couldn’t breathe, and they planned to wait “until he turned blue” to repair his heart.  They didn’t warn me that it was critical that he stay away from anyone sick, and when I took him to Loma Linda for a reflux examination in January, he contracted RSV–a deadly illness for infants, especially those with fragile medical conditions. 

On the morning of January 24^th, 2003, when Jet was 3 months old, just after I’d spent frantic time on the phone desperately telephoning Jet’s Loma Linda doctors, his face went grey and he stopped breathing.  I gave him CPR as we rushed to our local emergency room, and thus began a nightmare of seven months in ICU and Jet fighting to get off a ventilator.  The philosophy of Loma Linda doctors is that parents have no part in a patient’s hospitalization, and I think they’re used to dealing with those who do not speak English.  They did everything they could to discourage our involvement in Jet’s treatments–brushing off my questions, and forbidding us from being in the room during procedures, yet using my son as their test subject during rounds and student instruction.  At Loma Linda they told us Jet would never breathe on his own and told me “Medical technology is keeping your son alive.” 

After two months in cardiac ICU, and many incidents of nurses giving Jet “chest percussions” to loosen up phlegm, knocking his ventilator tube around, and causing him to go into respiratory failure, the doctors informed me that Jet would die unless they put him on a special life support machine called “ECMO”, which stands for “Extra Corporeal Membrane Oxygenation.”  This machine is similar to those they use for heart bipass surgeries; it takes the blood out of your body–bipassing the lungs–puts oxygen into it and puts it back in your body.  (This machine can bipass the heart and lungs, if necessary).  While on this machine, Jet’s chest did not rise and fall, his eyes were glazed open–the only sign of life his enlarged heart pounding visibly inside his chest. 

Finally, a bronchoscopy revealed the problem: long-segment tracheal stenosis and tracheal malacia. I was told that Jet’s airway was the size of the part of a pen you click with your thumb to get the point out. Just two weeks earlier, another infant had died of this condition before they could perform surgery.  Jet’s lungs were completely collapsed; there was a great risk of brain damage from ECMO, and a good chance of death after 28 days.  After lingering in this condition for 10 days, Jet’s lungs were reinflated and he was ready for surgery. 

On a rainy day in March, they repaired Jet’s trachea by bisecting it, and patching it with pericardial tissue (a “pericardial patch tracheoplasty”).  They also put on a pulmonary artery band, which should have been effective in keeping his lungs being glooded with blood, though the band would require another heart surgery when he grew bigger.  After unsuccessful “sprints” off the ventilator that were more like marathons (one lasted ten hours), Jet still couldn’t breathe on his own, so they gave him a trachestomy along with a gastric tube and a Nissen fundoplication to prevent reflux. 

A week after the placement of a tracheostomy tube, it is necessary to replace it.  The doctors had been advised by a doctor in Indianapolis (as advised by Dr. Lauren Hollinger in Chicago) to use an adjustable Bivona Hyperflex trach tube, which was made out of a soft rubber and had metal reinforcement, like a spring, inside.  It could be made longer to help stint open the airway as far down as necessary (since tracheal malacia makes the airway floppy, and Jet’s airway was especially floppy because of the pericardial tissue).  Prior to this trach replacement, Jet only needed slight support from the ventlilator.  After the surgery, he went from needing 5 breaths from the vent per minute to 10, to 20, to 30.  My husband and I came in and looked at Jet’s numbers on the vent, and my husband shouted, “Bag him!”, meaning give him CPR with a manual pump.  He was in respiratory failure. 

One thing you have to know about Loma Linda is that because it’s a Seventh Day Adventist institution, it entirely shuts down from Friday evening until Sunday morning.  (On a side note, it also means you can’t get caffeine inside the whole town, and you can’t use salt, mustard, or anything other than vegetarian food in the cafeteria).  More importantly, you can’t find a real doctor there on the weekend–only residents. 

That night, a young resident showed up and looked at me.  “What do you think we should do?” she asked.  “Put back in the other trach,” I said.  I had been examining the old trach and could clearly see that it was longer and more firm than the one they’d just inserted.  We would learn later that Jet’s airway had been collapsing below this new, hard, shorter trach.  I completely lost faith in Jet’s doctors that night.

After this incident, Jet laid in their ICU wasting away for five-and-a-half months as I battled to get him transferred to another hospital.  He contracted MRSA, a horrible staff infection that is terribly contagious, chronic, and can kill you.  This infection is resistant to antibiotics (the “r” is for “resistant”); and having it means that anytime you’re hospitalized, you have to be in isolation, and everyone who comes into contact with you has to be gowned and masked.  Jet was spending all his energy fighting this infection, not gaining weight, and struggling to breathe, yet no more cardiology tests were taken.

I’ll admit at this point I started to feel frantic.  Loma Linda will not let you be present in the room when your child is having a procedure, but one day I was there when they tried to give my son a transfusion without my consent.  When I argued with the nurse, the doctors decided to limit my visitation and restrict me from talking to any specialists directly about my son’s condition.  They used this incident as a reason not to allow Jet to go home with a home ventilator, citing ”psychosocial issues” (as if any parent in my situation wouldn’t have gotten a little psycho).  Remember, they said he would be on a ventilator for the rest of his life, but they wouldn’t let him go home with a ventilator.  Instead, they tried to get us to put him into their pediatric subacute facility, “Totally Kids,” a miserable place in Colton, CA–more than an hour away from our home.  My husband cried after he went there.  He said that it smelled like a veterinary hospital, and that the children were sitting in wheelchairs staring off into space or watching “Cops” on TV.  There was no way our son was going there, and I feel for any families who have no other choice. 

I can’t even describe to you the fear we lived with during this time.  I was growing more and more anxious and I insisted that I be allowed to talk to Jet’s surgeon.  When I asked him if he planned to repair Jet’s heart, he said, “We have no further plans for surgery at this time.  He just needs to grow.”  I would learn later that the reason Jet wasn’t growing was that the pulmonary band wasn’t working and unoxygenated blood was shunting from one side of his heart to the other.

1. Do not let your infant be around anyone sick. 
2. Avoid the hospital if you can, but go to the emergency room if your child seems to be having trouble breathing.  Signs of trouble breathing are “retracting” and “nasal flaring.”  If you can see your baby’s ribs when s/he breathes, that’s retracting–a sign of difficulty breathing.  If you can see your baby’s nostrils flare when s/he breathes, that’s a sign of difficulty breathing.  Go to the emergency room if you see either of these signs. 
3. Trust yourself and pay attention to the signs your child gives you.
4. Be involved in your child’s medical treatment.  Ask lots of questions and do your own research.  Go online and find a forum.  Tracheostomy.com was a lifesaver for me.  The parents there supported and encouraged me, and I don’t think I would have gotten through the experience without them.
5. Document your experience through email or a journal.  Writing through it will help clarify matters for you.