No More Tubes!

We have had a very exciting couple of days here in the Schwartz household! I know it's been a while since I posted last, and so much has happened in the past couple of days! So here's a little update on where we are:

1.  Dialysis class - Bill and I had the first part of our dialysis class yesterday morning.  Since we'll be doing Stephen's dialysis at home, we have to learn all the ins and outs of peritoneal dialysis (PD) so that we can both administer it at home and recognize the signs of infections and fix things when they go wrong.  There is a machine called a cycler which does most of the work.  We just have to be able to hook him up to the machine and get the machine running.  And then trouble shoot with the alarms sound.  Luckily, they've made the machine pretty idiot-proof, so I think we'll be ok.  The biggest thing will be preventing infection.  Which leads me into our next item.....

2.  Infection....again.  On Friday night, Stephen's nurse noticed that his dialysis output was getting a bit cloudy again.  A sure sign of infection.  So they started running labs immediately, blood and a culture on the dialysis fluid, and started an IV line for antibiotics.  The first cultures came back pretty good, with just a slight elevations in his white blood cell count and no cell growth in the culture.  So they moved the antibiotics from the IV line to this dialysis fluid and his fluid output seemed to clear up a good bit.  But then his cell count on Saturday night came back much higher and the culture had grown bacteria.  So they increased his antibiotics.  By yesterday, they had pinpointed the bacteria to the same one he had a few weeks ago from his ventilation tube.  This time it seemed to have grown in his PD catheter, so it was a positive diagnosis of peritonitis; an inflammation of his peritoneum (the lining around the abdomen which does the "work" of the dialysis).  So now Stephen is getting a 14-day course of some pretty heavy duty antibiotics to hopefully kill this bug for good.  The only downside....the antibiotic can become toxic and affect Stephen's hearing.  But they'll test his blood in a few days to make sure the levels don't become toxic to him.  But I think this is something we're going to be dealing with over the next year or two while he's on PD.

3.  Change in Nutrition - the nutrition people and nephrology are still working on getting him the right amount of nutrition.  The big thing is making sure Stephen's not fluid overloaded, but that he gets the right amount of calories.  So it's a pretty delicate balance.  And to make matters worse, the poor little guy the worst case of diaper rash over the weekend.  :(

4. G-Tube Change - Yesterday afternoon after our class ended, Bill was cuddling with Stephen and they fell asleep together in the rocking chair (so cute!!!!).  Bill woke up thinking Stephen had spit up on him, but when I looked at Stephen, I noticed that there was a little spot of blood on his onesie.  When I opened up his shirt, I found that his g-tube (feeding tube) had come out!  Poor Bill panicked and though he did it, but the truth is, hat the g-tube was bound to come out.  For days, it was looking like the tube was going to come out and because Stephen's stomach was so small, the surgeon couldn't put anything more permanent in.  Once a g-tube comes out, you only have about an hour to put something else back in before the hole closes up and then you have to go to surgery to have it fixed.  So the nurses and Dr. Lazarte, the neonatologist, scrambled to figure out what they could put that would be a better fix, and then had to find something to fit the little guy's tummy.  It felt like it took forever.  And Dr. Lazarte was trying all sorts of tubes, and nothing was working.  And let me tell you, it wasn't easy watching them try to insert tubes in his belly while holding him down .  Stephen actually handled it way better than Mom and Dad!!!  But eventually they decided to put in a "button" instead of tube, which is what the nurses had been asking for all along.  It's a little port on the outside of his tummy with a cap.  When it's time to eat, we snap on a little connector tube (about 5 inches long) and then connect that tube to the feeding pump tube.  When he's done eating, I take off the connector tube and close the port.  So when he's not eating, there are no tubes connected!!!  It's pretty awesome.  And will make tummy time and baths much easier!

And the best part of all............

5.  No more oxygen!!!!!  Yesterday morning, they took Stephen off his nasal cannula and all oxygen.  It's completely gone!  He's just now breathing ambient air.  It's so amazing!!  And his respiratory rate and oxygen saturation were beautiful yesterday!  We went from thinking this little boy would never breath because we were told he wouldn't have any lungs, to now having no respiratory support what-so-ever.  He's done so well, that he won't even need to see a cardiologist at all.  He'll still see the pulminologist a few times, but it's absolutely amazing how he's conquered every challenge he's faced so far.  Every day he looks and acts like a normal baby.  It's so incredible.  People stop in our room all the time to see him (he's quite the popular guy in the NICU) and they are so amazing at his progress.  All I can say is that science and medicine can't explain what has happened in the past 6 weeks.  There's no doubt in my mind, that he truly is a miracle.

So, now that they've taken away all his respiratory tubes and he no longer has his long g-tube, all that's left is his PD catheter!  Of course, he's still hooked up to the monitors, but picking him up and playing with him now is so wonderful!!  I guess I better start working on his nursery, because he'll be home before we know it!!! :)