Darn TPN!!!

So around the 2nd week of June, I started to see some changes in Jake.  He is normally very pale looking.  Well he looked like he had some color.  He didnt look so pale.  So I kinda thought something was wrong.  I didnt think much into it because he was acting pretty normal.  His nurse came a few days later and I asked her what she thought and she agreed that something just didnt look right.  So I called his pediatrician to get an appt in to see what he thought.  I had talked to my mom about it and said he looks kinda yellow but it was hard to see.  Well we went to her house and Jacob came with me.  And when we got there, he was VERY yellow.  I knew in fact that something was not right.  Thankfully our appt with the doc was that afternoon.  So we got in and he agreed that he looked yellow and wanted us to get blood test done right away.  We had scheduled one for the beg of the next week but he did not want us to wait.  It was a friday afternoon and I knew it would be hard to get a blood test done.  We have to get our home health nurse to come and draw his blood out of his broviac.  If we dont have a scheduled appt with her, its pretty hard to get her to come.  The doc wrote a STAT order and sent it over to them.  I called her and she said she was actually right around my house and she would come right then and take the blood.  She came and got it to the lab just in time!  It was supposed to close about 10 min later.

So we knew we would get the results back that following week so we didnt stress out much about it.  Saturday came, and Tyler had a basketball game.  So Jacobs nurse came that morning and we went to his game and had a great time.  We decided to go get some lunch after his game.  On our way to lunch I get a phone call.  It is from a GI doctor ive never heard of.  So I was a little confused why she was calling me.  She said that Jacobs liver enzymes were VERY high and we had to get him to the hospital IMMEDIATELY!!!  She said that something could be seriously wrong and he could be in danger.  So the faster we get him there, the better things could be.  We rushed home and packed up some bags and drove to the ER.  We sat in the ER for 5 hours while they did test after test trying to figure out what was going on.  I was just so worried because I had no idea what was wrong and they were not telling me much.  They admitted us so that they could do more tests and watch him closer.  When they did the ultrasound to see if his liver was enlarged, they found that his gallbladder was big and it was full of sludge.  That was not the cause of the high liver enzymes but it was a problem we had to take care of.  Thankfully we caught that because that could cause a lot of pain.

After all the testing it was proving that the TPN was the problem for all of this.  Being on TPN is very hard on your liver.  And so it was really effecting Jacob and his liver...and also his gallbladder.  TPN is hard on almost every organ it touches!  And being on it 24 hours a day is not good.  The more you are on TPN the harder it is on your organs.  So they took him off TPN for a few days and his numbers started to normalize.  They changed around his formula and then said we could no longer be on 24 hours.  Jacob gets dehydrated VERY fast and VERY easy, so it was difficult to take him off of 24 hours.  So they upped his fluid in the bags and gave him supplemental fluid that would run at the same time as his TPN but once the TPN stopped, the fluids would still run.  That is different on your organs because its just normal saline and has no long lasting effects.

The doctors were finally satisfied with his numbers and how everything was...and we were all set to go home!!  And then they came in to change Jacobs dressing on his broviac.  And it was draining some nasty stuff!!!  So the surgeon was called in to look at it.  And what do you know?  He has a staph infection!!  They took cultures from the drainage and sure enough, it was a staph infection!!  So that kept us in a week LONGER!!!  We were so mad.  The ended up having to pull his line because it was not getting better despite him being on some really heavy duty antibiotics.  So they pulled it and placed a PICC line in his arm.  Its the same thing, but its just used for short term access rather than long term like the broviac.  The day they placed pulled his line and placed the PICC line, jacob started having tummy troubles.  It was then determined that he had contracted CDIFF.  And then the doc told us just to go home haha.  We had to wait another week to get his broviac placed again.  But they said that since he was just getting sicker staying at the hospital, we should just go home!!  So they gave us the meds he needed IV form and sent us home.  It was pretty funny.  But we were so glad to be home.