Thursday (12/13) we were at the hospital at 8:30 to check in for an Echocardiogram that Ryan's cardiologist ordered. Their goal was to attempt to get a vague idea of his pulmonary hypertension status. His cardiologist is absolutely convinced that the pulmonary hypertension is not present. Her thinking is that the settings that are on Ryan's vent are so high that his lungs are being hyper-expanded (blown up like a balloon). By having such hyper-expanded lungs, that doesn't leave much room in his chest for his heart to work to it's full potential. His lungs squishing his heart is making it so that his heart is not receiving blood like it should therefore the blood that passes through his lungs is not being oxygenated the way it should. Her theory is that this is why he is requiring so much ventilator support, O2 and medication. She feels that by lowering his vent pressures, everything should start falling into place. The pulmonologist is the only specialist authorized to lower vent settings for Ryan. The cardiologist is guessing that the pulmonologist is reluctant to go down on pressures due to the outcome of Ryan's previous cardiac catheterization that measured the pressure that his heart is pumping. It is thought that those numbers were so bad and inaccurate due to Ryan being as sick as he was. Now that Ryan is doing so much better, health wise, the cardiologist would like to have another cardiac cath procedure to prove that Ryan's cardiac output is a little more on the normal side. Keep in mind, the last time this procedure was done, Ryan had a large blood clot in his right leg. This caused all kinds of complications and he was on blood thinners to assure that the clot would not grow and ultimately stop blood flow. Mom and I are a little nervous to have this procedure done because of this past procedure. Plus it always gets the mind thinking, when the doctors tell you about possible complications that might arise. Even though they say the chances are low. But back to the topic. Due to scheduling and that this is not an emergency, the cardiac cath will not take place until February 21st.
The following day was a field trip to the ENT. This appointment was a follow up to satisfy discharge orders from the hospital. The ENT was impressed with the way Ryan's trach site looked. He didn't feel that any changes needed to be made and that by the time we see him next, Ryan could possibly be sprinting off the vent. I think he is getting a little to far ahead of himself. Sprinting is a term used for vent patients that are strong enough to breath on their own for periods of time while not connected to a ventilator. This is typically done while the patient is awake and is started at small increments and gradually raised to larger time lengths. Ryan's vent pressures and O2 requirement would have to be dropped drastically from where he is now. That might take awhile. When parents have spoken to as many doctors as we have, it sometimes feels that they tell you what you want to hear. Not all of them though. In fact, some are direct and to the point. We prefer direct and to the point.
Looking back at previous posts, I noticed that there was something missing. After Ryan was discharged from the NICU, the hospital asked if they could interview mom and I and create a video of our story at the NICU. This video was to be shown at the annual fundraiser that the hospital puts on. The crew came to our house and interviewed us in our living room. They had asked us if we had any photos of Ryan that they could use when editing there interview compilation. Ha, little did they know I had taken around 2,000 photos to date. I copied all the photos I had and let them choose which ones they wanted to use. I think the ones they used were appropriate. The video the hospital made was about one life beginning and one life ending. Showing their wide range from neonatal care to the hospice services they provide. The most nerve racking thing about this, was that we were invited to the fundraiser gala where the video was being presented. Now for the nerve racking part. The staff wanted us to get up in front of a thousand people and speak to them about how important their donations are in keeping the integrity of care present at their hospital. Well, with all of the items they had planned for that evening, the MC forgot to call us on stage and the crisis was averted. Our video, along with their silent and live auction, helped to raise over 1 million dollars for the hospital. Below is the video that is on youtube.com. Keep in mind there are two segments to the video. So if you are able to, watch the whole video for the entire experience.
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