Day 38:Frankie Fire Hydrant, put that thing away

An early night update (which has turned into a multi hour essay) while I have this info fresh in my cranium. We came in around 3 prompt today to meet with the speech therapist on how to feed the boy. She taught us about how to apply light pressure to the roof of the mouth with the nipple while putting a finger under the chin to get him to latch on. I am aware of how dirty this sounds, but it works. He took a good amount of the bottle, 10ccs before he spit it up. The problem lies in his constant feeds via a feeding tube that had just been turned off 20 minutes earlier. Frankie Fresno was just too full. As I type this, Alex is trying again with the bottle, we have turned his feeds off a little over an hour ago. He only took 5cc and lost interest. Alex's mother Sue dropped in for a little while around 7. Alex and I stepped out for a minute to eat dinner. While eating dinner, the doctor dropped in to talk to us about Frankie Fargo. We had a misunderstanding of Pulmonary Hypertension. The pulmonary artery carries blood from the heart to the lungs, hence the name. The problem is the blood vessels in the lungs are constricted and cannot carry as much blood. Less blood, less oxygen.  Also because these vessels are constricted, this causes the blood pressure to increase. The increased pressure is actually what is called pulmonary hypertension. All of this increases his heart rate, breaths per minute and lowers his oxygen saturation. Up until now, they have been trying to ween him off of oxygen. The new approach, starting tomorrow, is to not only increase his oxygen mixture percent (room air is 21%, he is at 30% now and will be turned up to around 35-36%) but also to start medicating him. Up until now we tried to keep his oxygen saturation in his blood above 90%, now we will be keeping it above 95%. The increased oxygen will cause the blood vessels in his lungs to dilate to decrease the blood pressure.  Also Frankie Flagstaff will start Sildenafil, better known as Viagra. This will be a smaller dose and more continuous dose that would be used for erectile dysfunction. Where for a Woody Harrelson, the dose is 25,50 or 100 mg as a one time dose, he will be on a much smaller dose throughout the day. We asked the Doc about baby boners and she said it is quite possible. Yet another reason why Frankie Fort Worth won't be able to lay on his belly. Watch out nurses. Marketed, Viagra is more a dedicated brand for pitching a tent, Revatio is more for Pulmonary Hypertension. The drug works by increasing blood flow to the penis during sexual stimulation and by relaxing the blood vessels in the lungs to allow blood to flow easily. So those old men reading this, you do breath easier with a chubby. The oxygen and Sildenafil will only "treat" the Pulmonary Hypertension while he hopefully grows out of it. To clear up the confusion we had before about a valve opening and closing causing the breathing problems, this is what we have gathered. The heart has 4 chambers. While in utero (in utero is Latin for "in the uterus", not to be confused with Nirvana's third studio album) there is a normal opening between the left and right atria (upper chambers) of the heart. If this opening fails to close naturally soon after the baby is born, the hole is called patent foramen ovale (PFO). A PFO will eventually close on its own. If this hole fails to close completely, it is considered an atrial septal defect (ASD). What we misunderstood as valve not fully closing, was them actually describing a PFO or ASD. It has not been determined that we have one of these, but it has been noted a possibility. What would cause it is a shunt. A shunt is blood flowing in the incorrect direction in the heart. If the blood was flowing through a hole in a wall it would cause the right ventricle to work harder. The muscle would then get bigger and stronger than the rest of the heart and cause pressure to the lungs to increase.  We have had 4 heart echos. The echos have not been able to get a clear view of this septum, a wall dividing a cavity, in this case the upper chambers of the heart, to have a conclusive answer on whether or not he has a PFO or ASD. Now having a PFO or ASD can be a separate problem from the pulmonary hypertension or it could be the cause of it. We are going to try and be here for the next echo so we can keep him calm so they can get a better echo, as he has been too pissed and flailing around in all of them to get an answer. But we do not know when that echo will be. As far as an ASD, if it were small and didn't cause any problems they would leave it alone, but if it were large or caused problems (i.e. pulmonary hypertension) they could fix it without open heart surgery. The procedure involves placing an ASD closure device into the heart through tubes called catheters. The surgeon makes a tiny surgical cut in the groin, then inserts the catheters into a blood vessel and up into the heart. The closure device is then placed across the ASD and the defect is closed and no long term problems are expected. Now we may be jumping the gun here, he may not have a holey heart, but then again this could be the cause of difficult breathing. Scary to think of a heart defect, but they are very common with kids with omphaloceles and this would be an answer and a simple surgery if necessary.  There will be a quiz on this tomorrow.