More medical lessons

More "Medical Lessons" ...
Most kids, by they are the time they are 2 1/2 like Manny, have heart rates approximately similar to adults.  100 would be a tad high, 70's would be about normal.  (Give or take).  But Manny?  His is faster.  Not sure why but it just always is.  Even at home, his day time rate is the 120's-130's and his night time rate is 110's.  I've NEVER seen it go below 100.  (He sleeps on a pulse ox at home that shows the rate.)
Wednesday night, Manny's heart rate kept dropping to the mid 70's.  Now this wouldn't normally even alert a nurse because that is "normal" ... but not normal for Manny.  So I mentioned it to his nurse who kept an eye on it for the rest of the night.  I was up quite late investigating the possible causes and if I needed to worry about anything. 

Eventually it stabalized at near normal so I could sleep. 



Picture from last week post broviac surgery

By morning his heart rate was still a little low but his blood pressure was VERY low. They redid it several times just to see ... it was accurate.  But thankfully, as the day progressed, his blood pressure returned to a normal range and has stayed right all day. 

Therefore, we got to move from ICU and to our "regular" room.  It was crazy how much better it feels over here!  I have spent so much time here that it feels like home, surrounded by (mostly) friends who are in our camp.  People here fight over who gets to take care of Manny. 

The strangest part is that Manny perked right up in this room!  He was doing better in ICU but now he's acting just like himself again!  (Just with periodic bouts of pain and a very sore, right abdomen.)

I put him in his bed and he did this huge sigh.  He said, "I home."   A very happy and sad statement all at the same time.  Happy because I am glad to know he likes it here and is not traumatized.  But sad that the hospital is considered a pleasant place to be.  It's a strange resolve.

smiley baby with his new bears, Thanks, Arlene!

The plan??  We are scheduled to have his gallbladder taken out on Monday.  It's called a cholecystectomy.  These days, they usually do it laparoscopically... which means small incisions and very little recovery time.  But Manny is not a candidate for that type of surgery. 

He has had other abdominal surgery so it would be better to do this as an "open cholecystectomy".  The surgeon will use the same previous cut to reopen Manny's belly, take out the gallbladder and visualize the liver.  We talked about "looking around" while down there but he doesn't want to because it could cause more adhesions and therefore more troubles down the road. 

He'll also have a cholangiogram... an imaging study of the biliary tree to see exactly where the blockage/problem is just prior to the surgery. 

Recovery for this is about 1 week in the hospital give or take.  Then several weeks recovery at home.

Meanwhile, we're about to start a new protocol to help reduce central line infections.  The team here is very excited because Manny will be their first patient that they establish within the hospital.  They have a few kids who come in with protocols and they follow them.  But they wrote and established the protocol for Manny.  So everyone is very excited.  They weill be doing some training for the staff and will include me on the training since I will need to be trained on the procedure so I can do it at home too. 

But the quick version is ... Manny goes on TPN for 18 hours.  He is off for 6 hours.  During those hours, we will put in an Ethanol Lock.  Push the liquid in his tube.  It remains there.  When the 6 hours are over, pull the solution out.  Feed.  The idea is that the ethanol doesn't actually enter the bloodstream (and if it accidentally did, it's not a huge deal) instead, it stays in the line/catheter to prevent things from growing in it.  We will do this Monday, Wednesday and Friday.  

They are most excited about this whole thing because most studies show that central line infections went down to basically ZERO while on this protocol.  And in the rare cases where it does get infected, basically zero need to be removed.  That is HUGE for him. 

Another cool part is ... there are no kids with this exact protocol (I'll specify more later) and so the IV team and I will be writing a case study involving him in the near future. 

8pm:  Notice Manny is scratching at his chest.  I open his gown and low and behold ... there's a bad rash in the exact shape of the tegaderm around his broviac.  And the dressing has completely come away and is exposing the site.  We've called the IV team. 

He's also started on a new low grade fever.  And a little cough/rattle. 

Like herding cats to stay on top of all this for him! Truly a full time job.