Coughing – Monitoring For Changes

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.

Disappointing Findings

Elias had another Bronchoscopy today and long story short the airway is not improved and still considered unstable and in Dr. Woods words, “down right scary.” They really can not figure out how Elias is thriving like he is. Basically, the vascular ring repair did not do even a fraction of what they had hoped for. We knew that was possible, but were hoping for the best. The trachea is still compressed significantly and of course there is the floppy tracheomalacia. Using the parenthesis symbols this is what a normal air way should be like if left is top and right is bottom: “()”  air flows through the middle. Elias’ airway looks like this “)(" air can not flow or is constricted. Add the Bronchomalacia a little lower towards the lung and things get ugly and out of control and takes very little to get Elias in trouble. In the case of yesterday’s episodes it was caused by an upper respiratory infection or virus of some kind. The cultures will continue to grow for 36 more hours, but the initial 24 hours does show white blood cells and negative gram rods. This more than likely is the early sign for an infection. As for the other times prior, well compression, floppiness, and unpredictable factors are likely the cause. That’s a fancy way of saying we do not know for sure and there is nothing we can do to prevent them from occurring. While much of what we just covered is almost review,  they were factors we already knew of, but we had hoped for a better outcome with the vascular ring release. The other disappointing factor is that there is really not much else we can do, but watch, wait and hope the compression and malacic areas mature and get stronger on their own. That is the really frustrating part to all this. The inability to explain or even prevent this from continuing to happen. We will always need to be at the ready 24/7 should Elias stop breathing again and that is the best that we can do.

If there is a bright side through all this, and we are really trying to find one, it is that the overall kind of sort of plan we were discussing Monday and it really will not change much. As we said they do not know how or why Elias is thriving like he is but we have to run with it and be cautious and vigilant to keep a watchful eye. We are going to continue the windows off the Si Pap. Tomorrow they hope to combine the two windows to create a daytime scenario without intervention and a night time usage of the Si Pap. He will also be getting pressure support on top of that, which is more like Bi Pap. The other component we are going to attempt is something Dr. Wood has had some success with in other extremely complex airways he has worked with. That is the use of a one-way valve or the passy-muir valve. We had tried this in the past but he is hoping the conditions inside have changed enough to have more of an impact. This will create a natural pressure to assist holding the airway open when Elias is off the Ventilator. It will hopefully provide enough edge to keep him off the ventilator for longer stretches during the day. In terms of when all this will happen to a point where Elias can return home is still very much in the air. It will be at least a few weeks. That too was a morale buster. I suppose much of this frustration stems from the feeling of going backwards almost to the point of guilt. We came into this without the need for any mechanical intervention and now we are being absorbed by the concept. What did we do? I think the resonating theme of all this is that Elias is going to have the tracheostomy much longer than we had originally thought. That too is difficult to come to terms with. The decisions we made did not involve all this. While we know it is not the end of the world it certainly changes the dynamics of things overall and the impact it has on Elias.

Despite the grim and disappointing news Elias did very well through the procedure. They also changed the trach tube back to a cuffless trach, Thank God! He recovered well and quickly and was butt-bouncing on his crib and moving all over within hours. That child amazes us to the very core. He amazes the doctors and of course family and dear friends. We have said it before, but today was one of those day that his terrific spirit helps us overcome the news and pushes away the negativity enough not to allow it to overcome us. I thank God everyday for allowing Elias the ability to show us his spirit while raising ours, especially when they do not feel like doing so. Mommy & Daddy Love you Elias and we are so sorry that you have to suffer and endure all of this.