To those affected by a heart defect:

Flying Tubes

March 17, 2007 at 10:10 pm by Mom & Dad

If you’ve been to the “Pictures” page on the site, you’ve no doubt noticed the tape across Haven’s cheeks to hold the breathing tube in place.  Every so often, that tape has to be changed to ensure that the tube remains secure.  This is not as easy of a task as you might think.  It is at least a two person job and can be a little tricky.  In order to make it easier for the tape-er, they actually have to turn the tape-ee (Haven) 90 degrees clockwise in her bed.  (Wish we had a diagram to show you in case you are confused, but if you took a picture of Haven from the ceiling then rotated her so that her head is where her left arm was, her left arm is where her feet were, her feet ….  you get the idea.  Anyway, this has very little to do with the post.)  So they successfully retaped Haven all up and rotated her back to her original position.  Well as you know, Haven has many other tubes and wires connected to her in various and sundry places.  After the tape-ers finished up, they called in Haven’s nurse and said, “We seem to have an extra tube laying here, where does it go?”  

After speaking with our nurse later today, we wish we could have seen her face.  She realized that the homeless tube was supposed to be in Haven’s stomach–it was her G-tube!  Well, they quickly made some phone calls and got the surgeon on call to come and place a temporary tube back into her stomach until the staff surgeon got here later in the morning.  The temporary tube lasted just long enough as IT actually came out right as the surgeons came later to fix the situation.  So she lost two tubes out of the same hole all in one morning!  The staff surgeon promptly placed a new G-tube in for Haven.  It is much more durable and should not be as prone to coming out as the others were.  Other than that, it’s been a pretty normal day. 

P.S.– Chest fluid was back up a bit, but she’s been getting some medicine to help her get less puffy by shedding fluid from her tissues.  It’s very probable that is the reason for the increase in drainage.  We’ll try to keep you updated on the chest drainage issue.   

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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