Monday, May 5, 2014

Chapter 10: Maximillan the Chameleon

One of the most intriguing aspects of kidney disease or disorders was that my children could be so sick and quite realistically battling life or death problems and yet look and seem perfectly healthy and normal!  They were in the NICU with all these tiny babies hooked up to intense breathing support and looking so sick and fragile and then they were there big and round and pink gulping down their bottles and wearing precious designer baby clothes their Nana bought them.  The central lines giving them life saving medications were now buried under their soft little onesies so any outward signs of illness almost seemed gone.  Our friends and family would come visit and they would remark how healthy they seemed.  And for a few minutes they would be lulled into thinking nothing was very wrong.  Then right around when they started to relax with this whole sick baby thing and think maybe it wasn't that stressful, Max would give them the scare of their lives and they would leave feeling all kinds of shaken up and convinced once more that the babies did in fact need to be in the hospital after all.

These moments had nothing at all to do with their kidney condition though.  It had to do with Max's other big issues which had seemed so important earlier on when we were frantically searching for answers to explain his respiratory issues. Once we accidently stumbled on the kidney condition and Addie got so spectacularly sick, our focus diverted to these new issues and Max's mysteries took a place more in the background.  Our lack of focus on them did nothing, however, to dampen the severity of them.   So as the dust began to settle at our new hospital, we started to once again attend to Max's scary respiratory issues.

During one of our first few days at the new hospital, one of our favorite nurses coined a new phrase for Max's issues- she would call them a 'Max Attack' and the name immediately stuck and even the doctors would refer to them that way in rounds.  A Max Attack was a much cuter term than the appropriate medical term which would be apnea leading to bradycardia or a lapse in breathing that would cause dramatic heart rate drops and even more dramatic color changes.  What would happen is that Max would get mad. Max is still very sensory sensitive and any sort of sensory overload would set him off and living in a loud well lit crowded NICU meant that he seemed unavoidably triggered many times a day.  Sometimes even having to poop or move would upset him.  He would start to cry.  His face would turn beet red.  Then as he opened his mouth bigger and bigger, it would seem to get stuck there. He would look like a flaming red statue, all of his limbs incredibly stiff.  Then as he held that for more seconds without oxygen, the red would transition to a bright purple, then a blueberry blue.  As he continued not breathing, the blue would turn paler and then duskier, a gray blue before he would finally pass out and the stiffness would collapse and he would be sheet white.  It was truly quite a display.  Another wonderful nurse nicknamed him Maximillan the Chameleon for his capacity to be so many different colors.

Max would start this process initially many times a day, probably once an hour.  If you could calm him down before he got too worked up, you could often prevent the full experience.  Al and I became experts at spotting the turning red phase and trying to hold and console him back to calm before any trace of the blue came on.  Often we were successful.  Other times he would truly turn blue but we could get him to calm and catch his breath before he would pass out.  But there were times when we just could not get him to breathe again and he would go all the way to passed out white and then the nurses would have to 'bag' him meaning they put an ambu bag which looks like a mask with a balloon attached and they make a tight seal and start pumping the balloon which is attached to an oxygen tank.  It is basically sending high pressure intense oxygen at him to try and trigger him to take a breath himself.  Sometimes the nurses would get him breathing in just 5-10 pumps.  Other times it would be a minute or more of pushing the air in before he would respond and breathe. In those early months it was 8-10 times a day that he would need to be bagged.

In early March, we finally had to have more answers as to what was going on because he was now past his due date and still doing it so it no longer looked like a typical preemie behavior pattern.  He went under anesthesia and they were able to do a scope or put a camera down his throat.  They diagnosed him with 'tracheomalacia' which means he had a floppy airway.  When he would cry, his throat would close on itself. They were able to get images with his windpipe completely shut during the scope.  And as long as he stayed upset and crying, it would stay shut.  If we could calm him down, he would relax and be able to breathe again.  At the time, it was something of an enigma why passing out did not immediately open his airway. Generally once someone is passed out, that tightness should relax and they should breathe again.  Max would pass out and just continue not to breathe, which we know think was caused by his brain not receiving signals correctly.  In those cases, the only thing that we could do to bring him back was use the bag to deliver enough pressure that we could actually pop his shut airway back open again.  There would have been more invasive things that could have been done at the hospital had that not worked but very thankfully he responded to being bagged every time.

Watching Max go through that was so heartbreaking and terrifying initially.  While it never became easy or pleasant, I will admit that we did become somewhat desensitized to it, and we needed to.  It happened so frequently you just could not emotionally sustain being completely traumatized that many times a day! Plus the more times it would happen and he would be okay, the more reassured we felt that he was in good hands and that there was no real need to panic.  In fact, within a couple of months, I think visitors were as scared by Al and I's lack of panic as they were by Max's color change display.  They would stare at us with huge eyes and wild fear as we would calmly pat his back while he was this intense purple statue.  I know I have many friends who could still tell you about the day they saw Max turn blue for the first time as a memorable life event of their own!! Max attacks would persist for a long time, although they did gradually become less frequent.  By the time he came home from the NICU, they were occuring a few times a week and we bagged him for the last time when he was around 14 months old.

I am so grateful that we had these amazing nurses who helped us see them as just a Max attack, just one of those things he does, who taught us how to be calm and help him get calm (and how to rescue him if it came to that) and who even allowed us to have a smile and chuckle with endearing names like Maximillan the Chameleon.  They had this way of turning the terrifying into the manageable and helping us see truly crazy intense situations as just part of life.  I don't know how we could have handled all the Max attacks without that!

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