Musings of a Heart Family: Ramblings

Wednesday, August 22, 2007

Ramblings

Tommy went to the endocrinologist today. Just another "ist" to add to my already long, long list. My sleep schedule is completely screwed up. I end up being up til 5 in the morning, and sleeping until 11ish. Matthew and Brandon stay up so late and no matter of approach will sway them to lay their heads down and sleep! I have always been a night owl, but when Brandon can survive on 4 hours of sleep a day and go like a freight train morning and night, I am having a hard time keeping up with him! I need a week of sleep! I have been given a respite opportunity...I can choose whatever it is I would like to pamper myself. Tough call. I just don't know!!! I thought about checking into a nice hotel for a weekend and ordering room service and going on a garden tour. Problem is, I have to train Rob how to care for Tommy, and it's just not working out. The point is to get away from Tommy for a little while, but if I have nobody is this whole world that knows how to care for him but me, then how can I ever get away. Maybe my respite should be to send Matthew and Brandon away for the weekend instead!

1 comment:

Awesome Mom said...: I highly reccomend making sure that your husband learns how to care for Tommy. It took a lot of patience on my part (it also helped that Evan was less complex than Tommy) but it was totally worth it. It helped my husband feel more connected with Evan and it also gave me peace of mind. What if you are in a sudden accident or something and can't take care of Tommy? Someone else needs to be there to take over just in case.

I think if you do get the chance the hotel ides sounds awesome. You could catch up on your sleep and get a nice break.; August 24, 2007 at 1:24 AM

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Welcome To Our Page

This page is a place for me to empty the thoughts out of my head when they begin to overflow!

I am mom to 4 boys. Our youngest, Tommy was born with complex congenital heart defects, and cricopharyngeal achalasia (poor swallow). He was medically fragile and required a Gtube to eat, a trach to breathe and oxygen 24/7. I started this blog when he was just an infant, blogging about all of the ups and downs of our family.

Sadly, Tommy passed away in August 2008. His heart went into lethal arrhythmia from undiagnosed bronchopneumonia. Our world was shattered. I continue to blog as we adjust to life without our sweet Angel.

Tommy's Diagnosis

Tommy was born 7 weeks premature with a combination of congenital heart defects and a poor swallow. His heart diagnosis is as follows: Double Inlet Left Ventricle with Transposition of the Great Arteries, Pulmonary Stenosis, Ventricle Septal Defect, and Patent Ductus Ateriosis. This is also known as "single ventricle" or "univentricle". It basically means the blood containing oxygen and the blood without oxygen met in one place in his heart, mixed together, and recirculated. This gave him low oxygen saturation levels in his blood. His poor swallow, also know as dysphagia was caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus worked sporadically. It caused Tommy to aspirate his saliva into his lungs. For this reason, Tommy was fed exclusively by a feeding pump. Tommy had open heart surgery at 4 weeks old, and because of his poor swallow, he could not make it off of the ventilator for 5 weeks. He required a procedure called a Tracheotomy to breathe on his own. Because of the breathing tube, he developed a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He could not breathe without his trach. The aspirations caused another condition called chronic lung disease. His brochial tissues were inflamed causing Pulmonary Hypertenison and asthma. He took a combination of medicines and required oxygen 24 hours a day.

Musings of a Heart Family

Wednesday, August 22, 2007

Ramblings

1 comment:

Diagram of Tommy's Heart Defects

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