Sleep Time

Karsie got a PICC line in.  Dr. Suttner called us tonight and asked if she could try to put in a line in a deeper vein.  The vein she had to use was in her jugular, which is on the side of her neck.  In order to do this Karsie had to be sedated, which also meant she had to be intubated during the procedure.  It only took about 30 minutes and they got it in.  When we left Karsie still hadn't woken up, but she was breathing over the machine, so as soon as she wakes up tonight she will be extubated.  She had a long night so hopefully she is getting some needed sleep.  

On to day 2 filled with barium and GI studies.  We will probably be getting a call in the morning, since Dr. Saenz seems to like to work in the morning, about the study or the results.  From there we don't know where we go.  

Results Part I

Dr. Saenz just called.  The good news is that it still doesn't appear to be an obstruction, so surgery for that is probably not in the picture.  However, it did show lots of air/gas all the way through and the lining is thickened. So something is keeping it in there, but we're not sure why and they're trying to find out.  

The long term prognosis is unclear but tomorrow the studies continue.  Karsie will have an upper GI and the goal is to see what the anatomy is like.  Saenz thinks the problem is mechanical, so this may lead to some kind of tube going directly into the stomach.  It may be a lot of things, but until it gets fixed none of those things are good.  

Post CT Scan

Karsie is out of the scan.  We are out of the NICU now as they are doing a sterile procedure on her (PICC line).  Hopefully they can find a good vein and get it in.  

Good news:  They didn't have to intubate her.  That saves her poor little throat from having to deal with more issues other than the acid that has been hurting it by throwing up for so long.  

We should be getting a call at some point in the next couple hours to tell us that we can come back (in other words they either got the PICC line in or another line) and information on the CT scan.

CT Scan Underway

Karsie is getting her first test done now. The goal is to not have to intubate her, but they are giving her just enough medicine to put her asleep, so if she doesn't handle it they will have to intubate. The pictures will be ready within minutes, but when they get read is anyone's guess.

The next test may come later if the CT is inconclusive. That would be an upper GI where they put barium in her bowels and watch the flow.

Finally, they are going to put a central line in after the CT scan. If they can get a PICC line in they will do that, but if not they will call the PICU and have them do one.

More updates later...

Update

Just a quick update...
Last night around midnight Karsie had a tube (larger than her feeding tube) placed from her nose into her stomach to try to deflate the bowel and empty the stomach. That tube produced some pretty icky stuff. It was a yellow/brown fluid that looked like poop... possibly backing up into her stomach as a result of a blockage. Since the initial stuff came out, nothing else has come out of the tube.  Not good news.

 
Another concern last night was that her blood cell count was lower than normal.  Because it looks like she will be going through tests and many more pokes, she received a unit of blood which helped bring her red blood cell count up. She is also getting IV antibiotics. Last night her CRP (test that shows infection) was about 12 which is high and this morning it was down to about 8. This means she is reacting well to the antibiotics. Her white blood cell count came up (another sign of possible infection).

This afternoon she will be getting a CT scan to try to get some pictures of her abdomen.  This seems to be our best shot at determining whether she has an obstruction or not. Unfortunately, she will have to be sedated for this. She might also have to be intubated (put back on the ventilator). The intubation would only last as long as she is sedated. While sedated, she will also have a PICC line placed so it will hopefully be still enough for them to put in the line without blowing a vein. If the CT results are inconclusive, then she will have the GI study (a barium swallow and a barium enema) that tracks fluid through a series of x-rays to see if they can see any kind of blockage.  

Again we're torn on how to feel.  On one hand we hope that they find nothing and she is not obstructed.  However, that means there is something else wrong and this guessing is not fun. On the other hand if they find that it's a blockage, it's at least an answer to why this is happening, but it's a scary answer.  There's no real way to hope here other than wait and see and then hope for the best outcome from whatever is determined.  

You are loved Karsie.  Show us your fighting spirit yet again... 

Tests

It has been an incredibly stressful couple of days for us.  Karsie seemed to be doing fine on the formula mix.  Then she started to throw up.  Today she threw up literally every feeding.  All of it. She's not keeping anything down.  She lost a ton of weight and her white blood cell count skyrocketed which could be infection or just a sign of swelling.  So, again the scare of a bowel obstruction is in the picture.  

Tomorrow (today by the time anyone reads this) Karsie will undergo a series of tests.  We're not sure what tests they will run but they will be to determine if she has an obstruction.  The real kicker was when she threw up the final time before they cut her feeds entirely and it smelled awful.  Kevin thought it smelled like sulfur while Michelle and the nurses thought it smelled like poop.  That's a bad sign.  

She's being put on antibiotics again and probably going to get a blood transfusion.  She had an IV put into her head and probably going to get a PICC line (or try to put one in) put in sometime tonight or tomorrow.  This seems to be a much longer stay in the NICU than we anticipated.  We know it sounds redundant, but we are so emotionally beat up right now we're not sure how or what to feel.  It always seems to be something.