Tomorrow marks one week we have been home from the hospital. It has not been an easy journey. First of all, this oxygen concentrator is huge! Then there is the fact he must be tethered to it day and night! Because he is so little, and has a trach, he has to be attached to a humidifier. He has about 8 feet of hose, because if he had it any longer, he would be losing his humidity.
He used to sleep in my room, right next to my bed, but because we live in a single wide mobile home (my little tin box), basically, his bedroom is now our living room. Mine too. I now sleep on the couch. We are trying to convert the bathroom right next to our room into Rob's office, then the old office will be Tommy's new room. This is easier said than done! Hopefully we can get it all finished by the end of the month. Then, I can put his humidifier on a rolling cart and move him back and forth at night and in the morning. Oh, the new room is just off of the living room, so it would be perfect. Just a TON of work. As of right now, all of his medical equipment, bed, swing, supplies, EVERYTHING is piled up in the living room! We basically have a little path from one side of the room to the other.
Well, Tommy is now making noises to be fed and changed, so duty calls!
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Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
2 comments:
Man that has to be a huge hassle. I hope that you can get everything moved around before you go insane.
I built up a nice supply of syringes the same way you did. When Evan was in the hospital for his second surgery I insisted on being the person to give Evan his medications. I would then rinse out the syringes and save them for later. We still have a nice stash from that.
I hope you can get your house in order soon. I'm sure it will be great to have a room for Tommy's things.
Jessica has been on oxygen 24/7 for about 14 years. I know that it's very important for the O2 to have humidity and we have a hum jar on Jessica's concentrator. Yes, they are huge, put out a lot of heat and are noisy. Some hum jars are more noisy than others. On the rare occasions that Jessica goes to school and we can turn off the concentrator the silence is very odd. lol
I have a question for you about the humidifier and the O2. Can't you use a 25 ft tubing? Jessica is on a 50 ft tube and the O2 is still humid.... but maybe not enough for the trach? I wish you didn't have to be on such a short leash!
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