Beepppppppppppp... My turn, as I fumble out of bed and into the room heading to the door and down the hallway. I reach her room and look at the numbers, all red and 0's. Looking into the Porta-lung I see the probe has come off her finger again. Shutting off the ventilator and the pulse oximeter I prepare to open the chamber up and reattach the probe to her finger. I re-close the chamber and turn the machines back on and wait for the numbers to come back up to normal. I head back to my room and glance at the clock, 3:35am. Back in my room I sit listening to the "gurr-lunk" and "wheeze" of the "iron lung" in my daughter's room on the monitor. I wonder if the alarms are going to go off and wake us up on this night again. I wonder how many other parents have to deal every night with one of these machines. I know there is not many in this area that are in use, as almost everyone in the hospital had not ever seen one. I climb back into bed to try to sleep. What does a parent say to a 15 year old child that does not want to go to sleep at night because she doesn't want to go into the "machine". She has known the freedom of sleeping in a real bed most of her life. She hates the lung, I don't blame her as she can not at present get into or out from with out help. She only needs the machine at night when she sleeps. But without it, over a period of time, her system holds too much carbon dioxide which is not good for her. I want to be able to say to her that every thing will be OK but I honestly can't. I would like to tell her to go play like other children but she can't. She has to carry the external oxygen pack on her back in school. She tells me that she is almost getting used to the stares that she gets from other people. But now I guess I am getting ahead of myself. She was told that she has Scoliosis at the age of 12. and by the time that we were able to get her rods placed in her back it was at a 78 degree curve. They tell me that a 40 degree is considered acute 80 is life threating. When she was in the hospital getting the rods put in we almost lost her in the surgery. Now they tell us that her breathing is not right at night and that she forgets to breath for periods of time at night. We tried many methods to have her sleep with at night but the Porta-lung was the only method that kept her carbon levels down and allowed all of us to sleep most of the night. Trying to redesign this lung to allow her to be able to get in and out of by herself is almost out of the question due to the fact that it is not ours. The insurance co. rents the machine and due to that I cannot redesign it for this purpose. Being that she is 15 years old and goes to high school on a daily basis this leads one to wonder how she is going to spend the rest of her life using this iron lung as she needs some one to see to it that she is properly set up in it at night to be able to sleep. Vacations and weekend trips to my dad's are now out of the question for her due to the Porta-lung unless I go to the expense of buying a mobile camper of some sort that I could put the lung into for the duration. But as of now I have no such means to transport the Porta-lung........... ********** It has been almost 5 months since I wrote the notes above and several things have changed. We have taken an over night trip to Dad's house but with out the lung as she can go for short times without it, however that proved to her that she needs the iron lung and has since resolved to the fact that it is a fact of life now to use it. We have also limited the number of "monitors" that we use at night now due to the fact that when she is in the lung she has to breath as the lung is working so we have limited the monitors to those that make sure the machine is working and the monitor in case she wants to say anything to us. After that we can now sleep much better most nights unless the lung quits or needs looked after in the middle of the night for what ever reason We have been told that we can "take the lung" on vacation if we ever go on one now, but how is the question now as it is the size of a single bed. Maybe some day I be able to "finish" this on a "Happily Ever After" note but for now this will just have to do. So I" tell her, Good night... the bed bugs can't bite... they can't get in. |
