The New Normal

Sam sure loves his daddy. He was in pretty weak shape in this picture and just wanted to be held.

We are quite changed from a few months back.. no longer shocked when Samuel has an impossibly frightening night of low oxygen saturations, respiratory distress and retracting, low heart rate episodes and the pain and in most cases the eventual GI problems. I mean it is pretty scarey and you never grow comfortable with these issues but we now know what happens and how it escalates. We know it as part of our life.. the new normal around here. This weekend turned out to be no different.

Isabella brought home a cough the other day after school and then shortly after I noted Sam's rattley breathing and more puny state in general. Within hours he was acting fussy and in some pain. Grandparents were here and he stopped feeling up to the visit. Within an hour or so of that, he was experiencing mottled coloring and so I hooked him up to the pulsox (he does not stay on this particular piece of equipement full time). The oxygen saturations were low and transitionary. He was dropping into low 80s and having little hovering periods even down to high 70s so I placed him on oxygen and tried to calm him. I made a phone call to our Dr. as he was putting both hands to his ears and I suspected yet another ear infection. The tipping point for other problems. I never got called back by the Dr as promised by the service. By the time the nurse arrived Sammy had better oxygen levels but was still in much pain. The night was a long one of this repeated behavior and he did not sleep at all. Noone did. Meanwhile, Bella was hacking up a lung, bless her heart, and with us so occupied with Sam, she basically soothed herself through the night.

The next day we went to our Dr.s office who thankfully holds saturday clinic hours. Bella, with her $40 office copay, was hardly looked at in the appt. "Just another cold.. all the kids have it." Now Sunday she seems relatively free of the cough.

The Dr. we saw was not our new pediatrician so Sam got to be a science experiment for yat another new face. He did find that Sam has an ear infection and required a shot of rosevin (no idea how that is spelled). He had lost about 4 ozs since our thursday Dr. appt, which I had yet to blog about but had been an absolute bright and shiney moment as we found out he had gained over 1 lb in two weeks since starting the MCT oil. This is the most gained in over 6 months of stagnant weight. He broke the 16 lbs and nearly reached 17! We were elated to have some progress! So it was a little frustrating to have the rug pulled out with illness the next day and now weight loss.

I am trying to keep feeds going normally despite periods where he has bucked at the food entering his delicate system. During bad illness we have to do this special interpretive dance figuring out whether to stay on fulltime formula, switch to pedialyte, slow the rate or give a break, hold the fatty oils or push them in tiny amounts..too many decisions for groggy moms and dads at 2 in the morning all the while debating oxygen settings and whether changing his diaper will irritate him and set off more bouts of pain.

He went on to have ups and downs all day, ending the day in a bit of the no-fun mode with low sats and labored breathing. The nurse had his work cut out for him and as he put it heading out the door this morning.."I earned my money tonight." I feel that all the time..without the pay. Mothering pays in longterm dividends, I guess. :) I am still battling nursing agency issues with not staffing the hours we are approved for and then sending smokers when told not to do so. The night nurse right now has a pungent smoke smell on his clothes and we are frustrated becuase he is actually good with Sam but feel like this may be more stress for his breathing issues.

On a side note, I got to get out a bit for dinner tonight. Sam was perked up late in the afternoon and so I joined some neighbors for an early dinner. I spent much of the time thinking about Sam but Jason did a really good job handling everything and said Sam did ok at first but slowly creeped into more negative territory. I came home to relieve him so he could get his evening workout in and then it was just rocking Sam and trying to soothe his sweet little raspy crys until the nurse could get here. I laid in my bed listening to his horrible breathing through the wall, feeling utterly powerless. Why can't we take it all away from him and make him well?

Today has been more of the same with the addition of some bradycardia episodes..low heart rate dives. He looks quite freaked when he awakes during those times. It must feel rather horrid to have your heart rate go down from 130s to low 50s in no time flat. It is lucky he is on his back or we would have injuries to worry about and not just ricks of cardiac arrest. Lord, give his heart some rest today and help his ears to heal so he can breathe easy and tolerate feeds in comfort. May the God of hope fill you with all joy and peace.. Romans 15:13