Monitoring for signs of pulmonary hypertension

As we continue to weigh the options for Luke's open heart surgery, are are still monitoring him for specific symptoms that we can clinically observe as related to pulmonary hypertension, they include:

• Poor appetite
• Poor growth
• Nausea
• Vomiting
• Lethargy
• Sweating
• Tachypnea (unusually fast breathing)
• Tachycardia (rapid heart beat)

As of now, we aren't seeing any of these signs, however his feedings have seemed a bit off over the past week.  Beginning tomorrow, I'm going to track his intake for a few days so I can validate his true appetite.. with multiple people feeding him - myself, Dustin and his sitters, it's hard to gauge sometimes how much he's actually consuming.  We have held off from starting rice cereal although he's now 5 1/2 months due to him not having a lot of neck strength and also due to the suggestion of his pediatrician.  We started Matthew on cereal at 4 months and Dustin and I had a brief discussion this morning about attempting to start with Luke over the weekend.  I'm not seeing any of the other signs listed above although his hands did turn purple for maybe 5 minutes following his bath one night last week... I'm wondering if that could have been because of him moving from a sitting position in the bathtub to laying on his back as I dressed him afterwards?

As we sort through information on pediatric heart centers, other items we're looking into:

• Patient volume and success rate for the facilities as well as the specific cardiothoracic surgeons at Boston, CHOP, U of M as well as Nationwide Childrens.
• I think we'd like to continue following with our initial cardiologist at Cleveland Clinic for Luke, however we will likely pursue surgery elsewhere based on other centers having a higher volume of this particular operation as well as a larger peds cardiac ICU for recovery.
• Requesting that we more closely monitor Luke's heart function / pulmonary distress to detect potential hypertension sooner rather than later (following his recent heart cath, we were moved from every 6 weeks to every 12 weeks for appointments - I think I would be more comfortable if we were to go back to every 6 weeks)
• Luke's neurologist is sending me studies / reports on the risk of neurodevelopmental delays associated with OHS and the use of the brain heart bypass machine
• With him now being diagnosed with tracheomalacia (instead of laryngomalacia as indicated by the first ENT in Cleveland), we need to make sure he has a brochial scope prior to his actual OHS to validate that his airway can support him being intubated and more importantly that he extubates without difficulty (also to verify his potential needs for CPAP to stint open the airway as an intermediate step between intubation and extubation)

We've been learning a lot lately, but fortunately we are not in an emergency situation with Luke and have the luxury of time to get comfortable with the details.  Also, we've been sorting through the ambiguity and seem to be getting to a place where we are asking the right questions and learning a lot about the process along the way.  I have also recently been hooked up with a local mom who has a child that had OHS at Boston and am interested in meeting with her to learn about their experience.

Other notes... if / when he is put under next time, in addition to the bronch that ENT wants to do, Luke's neurologist also wants to do an MRI.