Well it is the beginning of a new week and as usual a busy one. Busy is good though, as long as it stays productive. Elias enjoyed his first Super Bowl at home. Last year of course we were in the hospital. We were not rooting for anyone in particular, just hoped for a good game and were not denied. Congratulations to the New Orleans Saints for their victory last night. Yesterday was not the best for Elias. We could tell almost from the moment he woke up in the morning that he was a little off. He has not been running a fever, but he has been coughing quite a bit. The previous few days have been rough as well with secretion issues, but yesterday we were not really being productive with the cough and clearing secretions to the trach. We actually gave him a dose of Atrovent for the first time in months it was so bad and constant. We also made the decision to keep him off the ventilator last night and run the cool mist into the trach instead. With the frequent and at times constant coughing the pressures in his airway are increased. In Elias case, as mentioned many times previously, pressure is negative. It is nights like these and of course when there is a diagnosed illness that we revert back to the cool mist to minimize those pressures. It proved to be the best decision as Elias has slept well through the night. No doubt, if he had been on the ventilator we would have been attending to endless alarms and probably frequent suctioning. He has been a bit flush and pale at times as well through the day and much less active than usual. Bless his heart though. Even when he feels bad he tries so hard to be playful and happy. Such a wonderful attitude. We are hoping that this is not the beginnings of something more serious, like a cold or upper respiratory infection. Thankfully, his secretions have been thin and clear, a positive sign. Typically, patient’s secretions will change color to yellow/brown and become thicker when something is brewing in the airway or lungs. We also have been watching his O2 sats (pulse ox) as they have been a little on the low side for what Elias, typically runs. We are happy to say that through the night they have slowly improved back to baseline. We will just continue to watch for any changes and hope that today is improved. We have been VERY fortunate this winter with the lack of “airway sickness” and the varies sundry forms it reveals itself. We truly feel the IVIG is a major part as to why.
Developmentally, Elias is beginning to want to “stand” (with our help of course) more. He is really getting good at pushing up from a bench sitting position to stand. We are currently working on getting him to lean on furniture while standing in an attempt to get him to the next phase of “cruising.” That of course is walking along furniture as a stabilizer. We are a ways from that of course, but it is something we have in our 6 month goal list. Elias was actually standing up leaning on the couch playing with toys for about 60 seconds without support of any kind. His physical therapist was impressed with what he was showing her and she gave us some ideas to encourage the activity more. He has not repeated the same success since that time a few days ago, but it does require his wobbly body to be in exactly the right positions to make it happen. The fact that he is wanting to place weight through his legs on his own more and more is the sign that he is working towards this. The part of all this that is so amazing to see is that look of pride on Elias’ face when he accomplishes something. It is so obvious and you can read his facial expressions and smile like a book when this happens. One of the truly magical parts of being a parent. We received some amazing feedback from the video we posted yesterday. Hopefully, you have had a chance to view it. It’s always great to hear the outside perspective. People have noted things that we overlooked, positive things mind you, but when you watch something everyday it can become clouded unintentionally. We are hoping that our success with this video recording it means that Elias is becoming less distracted by the camera which means more video opportunities.