Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Monday, October 3, 2011

Day 21 - 5:20 pm - Eating Again!

Today they started giving Trey milk through his feeding tube. The tube goes up his nose, down his esophagus, through his stomach and into his duodenum (the first part of the small intestine).  This is so that the milk stays down.  The tube goes through cardiac valve into the stomach and then through the pylorus valve into the duodenum.  Since the tube keeps these valves open a little, it's harder for the milk to come back up through two valves into the esophagus rather than just one.  If the milk traveled back up the esophagus there is a chance that it could make its way into his lungs - not good.  That could cause all sorts of other issues.  He'll be getting about an ounce and a half over 24 hours or about 1/2 teaspoon every hour.  After that the nutrition team and the doctors will figure out how much more to increase.  It will all depend on how he tolerates the feeds.  So far today he has been doing great but he is getting so very little right now.

He also is getting his blood transfusion right now.  Daddy's blood was a match and it is going into his central line.  Before they gave him his blood they changed the dressing on his central line.  The transfusion will last about 4 hours and he is getting a total of 130 ml of blood.  Thank you all to everyone that offered to give blood to Trey.  You are all so incredibly amazing!

Trey getting the dressing of his central line changed 

They are talking about moving us out of the PICU tomorrow to the cardiac unit across the hall.  This is great news for Trey.  That means he is stable and improving.  For me though, I think I might go through PICU withdrawal!  I know the nurses and doctors in the PICU.  I trust them with Trey.  I know that when I go home at night he will get great care.  I feel comfortable leaving him here.  I feel comfortable asking questions and they have been so nice to talk to.  They do a great job at taking care of Trey, while also keeping me sane.  I'm sure the nurses on the "other side" are fine too - I just don't know them and they dont' know Trey.  Plus, they have both single and double rooms in the step down unit.  Most likely we will have a double room because Trey is not in isolation.  They try to keep the single rooms for children that are contagious and have to be in isolation.  We will probably be paired off with another cardiac child.  Not necessarily looking forward to that because when/if he starts nursing again there won't be much privacy.  Yes, even thinking about moving to a new room now is starting to get me a little anxious.

They were going to try to wean him off of the oxygen today but he had some episodes of tachypnea or rapid breathing.  His alarms went off a few times this afternoon, they are currently set to go off if he takes 70+ breaths a minute, but they seemed to have stopped now.  So they are going to keep him on oxygen for a bit longer to see what happens.  If his breathing stays normal tonight (which it has been) they will take him off oxygen.  Yet one more thing coming off of him!

They're still thinking we'll be here for about another week or so.  If everything goes smoothly with the feeds and the weaning of the methadone and morphine, they're thinking discharge would be sometime around October 12.  I'm looking forward to getting back to a "normal" routine but a little afraid of getting all of the boys back together again!  We're going to definitely be more diligent about making sure Cole is extremely gentle around Trey.  No more laying on him to give him some loving!

Trey getting new sheets and gown

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