SO.. Wednesday night we had a crash of sorts for Samuel. We had given Sam his 6 pm feeding and then he seemed to not tolerate it as well and was incredibly tired so we put him down. When an hour later he seemed to be breathing a bit more labored and raspy I was concerned we may have pushed the bolus feed too fast for him and hoped he had not aspirated anything. We kept him upright and kept trying to calm him. It was the beginning of a horribly frightening night. A hundred times we asked ourselves whether to put him through a trip to the ER or all the way to Sacred Heart but then he would seem to calm back down and somehow we made it through the night. We employed every piece of middle-of-the-night parents first aid for bad breathing..took him outside bundled to breathe cool air... ran a humidifier.. used the menthol rub.. used the suction machine.. patted his back for hours but he was in absolute distress and then he was bradying too and changing to his scarey grey color.. so we put him on the oxygen by cannula. I was so bleary eyed and tired I hardly knew my own name.
Then in the morning I called our Dr and they were not opening till 2 that day so she advised we go down to the ER. By the time I got over there.. wouldn't you know it he sounded so much better! SO I felt a little crazy to have him doing better and still going into the ER. Well my Dr met us down there and said this was croup but as Sam does not know how to cough so we don't have the usual barky cough.. the secretions just sit in the large upper airway. Somehow this coupled with his trachea issues is why he can't breathe so he had a nebulizer steroid treatment and she brought the machine to us at home to continue there. We have used it on the girls in the past but it has been a bit of an argued treatment for Sam. The Scared Heart pulmonologist said steroid treatments can make tracheomalacia worse as it can further weaken the cartilage so...we hope this is not going to harm him. My pediatrician was so kind in offering to deliver it to us so we avoided another trip out that day.
The next day through today have been waves of doing pretty good to almost normal and then absolute crashing waves of distress. It seems to have no real connection to the nebulizer treatments or anything in particular. He just starts acting sicker, more puny and breathing gets so bad then color goes and then heart rate. We took Sam and all his equipment tonight to my inlaws for a visit so the girls could decorate their tree. Right before he went into some distress so it was nice not to be alone with the worries for a few hours. It is times like these when I don't like being alone with him because I am so scared he will have a major event and am constantly thinking of CPR and what I would do in that scenerio. The time I did the rescue breaths is still fresh in my mind and I am absolutely unsure if I would have the composure to do compressions if necessary. I wish we had help at home with a nurse during these times. If any other parent saw their child like this they would be hitting 911 so fast it would make your head spin.. but as this is something that happens to him..we just have to find a way to handle it at home or live in the hospital every time he gets a cold. I am going to have to talk further about this with our pediatrician.
Right now he is on the oxygen due to a series of bradys since getting home and trying to fall asleep. He is pretty miserable but not an hour ago he layed on my chest and almost seemed okay other than some raspy breathing and a vibration feeling in his back. I hate this darn cold, croup, congestion or whatever it is.
Bella had a Thankgiving luncheon and program today, which thankfully Jason was able to attend for us. I was worried she might be the only child without a family for the family feast. Tomorrow is her last soccer game and end of year party. I hate missing these little experiences with her as it is becoming the theme this year. This is just not our year. There will be plenty of years to do those things together though. Sam is sounding a little better..better catch some shut-eye.