Let’s put my issues aside and recap what’s been happening on the Wyatt front.

As you saw in my previous post, Wyatt finally showed off his skills of sitting up on his own. I can’t even explain how much of a relief that is. As much as I know not to look at the time frame of milestones too closely, there is always that nagging question of how much of a neurological impact his daily struggles have. Having him finally sit up on his own unassisted and for over 30minutes nonetheless playing with his toys, that’s more than reassuring that he has his own plans of what he can and cannot do, as well as when and how he’ll do it. The coordination is definitely there and the rest of his strength will come. His well visit at the Pediatrician last week confirmed that he is gaining weight appropriately though he is short for his age and we will need to continue to keep an eye on his height progress. Otherwise, he is doing well and the Pediatrician switched him to once daily multi-vitamin with iron instead of a twice daily iron supplement. On the Pulmonary front, well, I haven’t made another appointment yet even though he was supposed to be seen by this week and get his last Synagis shot. Everything that needed to be addressed has been done through emails and phone calls only since his last hospital stay. Quite frankly, unless absolutely necessary I’m simply scared to get in a car with Wyatt again since our traumatic car ride home from Chicago. And my frustrations with the daily vent setting jeopardy over the last few weeks are making me less than patient to see another doctor at the moment.  Since Chicago about a month ago and Wyatt’s following illness, we’ve had ongoing frustrating trials of once again finding stable ventilator settings. After every attempt has failed to hold true for more than 24hours and Wyatt still having an increased number of episodes daily, we concluded the only thing left that was recently changed is the actual operating mode of the ventilator. CAMP switched Wyatt to Assist Control mode vs his previous settings in SIMV mode. In simple terms, in Assist Control Pressure mode the ventilator does all the work for the patient and provides the same amount of pressure with each breath as preset on the ventilator. In SIMV Pressure mode, the patient can initiate breaths on his own and the ventilator will only kick in to the preset numbers should the patient not reach the minimum desired pressure on his own or should he not take a breath within a set time frame. Therefore, Assist Control means the ventilator is in control of each breath taken vs SIMV means the patient is in control of when a spontaneous breath is taken and with what intensity (a.k.a. pressure). Wyatt has always been on SIMV for that very reason so that he can initiate breaths on his own and be in control of his own breathing as much as possible with the ventilator being his fail safe backup system. However, SIMV mode makes it a little harder to find a baseline ventilator setting because his CO2 readings won’t be as consistent if he is breathing over the ventilator. Therefore, we can only speculate that this is the reason why CAMP switched him to Assist Control mode to find optimal ventilator settings in the short amount of time that they had. So after ruling everything else out at home we came to the conclusion that this mode change is the only plausible reason left for Wyatt’s continuous discomfort. Therefore, we talked with our local Pulmonologist and switched Wyatt back to the SIMV mode. The difference was instant. He was suddenly laughing again and wanted to play instead of being clingy and cranky all day long. Why that thought never crossed our mind earlier, I don’t know. Regardless, we had finally found the underlying issue and fixed it. That said though, since the beginning of this week we are now battling teething again and therefore have again started a vicious cycle of numerous daily episodes and clinginess. Apparently this struggle is never-ending. Tylenol is our best friend but unfortunately Ativan had to be used a few times also. I hate Ativan and I really wish there was an herbal alternative for infants to ease anxiety and act like a short term mild sedative. It would be so nice to find a holistic pediatric doctor to consult with. When Wyatt is not teething however, we have figured out a pattern to Wyatt’s episodes. Teething discomfort aside, he seems to always be at greatest risk for episodes right towards the end of his (G-tube) feeds at which time he is also the most tired and gassy. We tried gas drops, gripe water, different formulas, different volumes and rates for each feed but nothing seems to be working. Sometimes just holding him in our arms until he falls asleep prevents the episodes but then other times he seems so uncomfortable and nothing soothes him that we are literally just an arm’s reach away from the ambu bag and O2 tank ready to revive him again. You feel so helpless. Again, I wish there were herbs for infants that could ease his feeding discomfort and let him relax enough to fall asleep without the drama. If anyone has any suggestions, please fire away.