Events over the last week...a.k.a we're in the hospital again.

We're in the hospital again. Matthew has been hospitalized since last Wednesday with a really horrible infection.  A lot has happened, and I have neglected the blog; finding it easier to update facebook.  However not everyone that loves Matthew is on my facebook, so I need to get the blog updated.  I'm going to give a short break down of the last few days.

• Last Wednesday June 29th, during the morning, Matthew's port needle came dislodged while his TPN was being infused.  As a result, a large amount of TPN was infused under his skin instead of his blood stream. We caught it when he started screaming.  It's a very painful thing to happen.  We called his nurse and she sent us to the ER.  TPN can kill/damage skin tissue; so it's a dangerous thing to happen.  The ER sent us home, saying just to watch it, and bring him back if the skin started changing colors
  
• Over the next couple days we had multiple problems with Matthew's port needles not wanting to stay in an getting dislodged, luckily not while the TPN was going though.

• Monday, when the nurse came to the house to draw labs from his port line, the line would not draw.  She made us an appointment for Wednesday morning for another nurse to come out and put TPA in the line.  This is a medicine that breaks up blood clots in the line and allows it to draw.

• Wednesday while the nurse was at the home, Matthew became very fussy and started throwing up uncontrollably.  I gave him medicine to stop the vomiting, and it only got worse.  By the time she had put the medicine in the line, Matthew started feeling warm.  He had a fever of 102.4.  The nurse called our doctor and left a message.   She left  (around 10 am) and had to come back in 2 hours to remove the medicine from his port.  1/2 hour later, he was breathing rapidly and I put his pulse ox on to check his sats.  His heart rate was way up, but his oxygen was still good.  By 11:30, (1 1/2 hours after the nurse left)Matthew couldn't keep his oxygen levels up and I put him on oxygen.  His heart rate had climbed to 190.  He was miserable.  By noon, he had a fever of 105. I had already given tylenol and we applied cool washclothes to his head and body. When our nurse came back, she drew the medicine out and drew the bloodwork we needed.  But it was also obvious we needed to get Matthew to the hospital, and we called 911 since I had no one at home to help me transport him.

• Once at the hospital, they drew bloodwork, gave ibuprofin, antibiotics, and admitted us.  We ruled out a bladder infection, and his chest xray looked a bit different from the ones he's had in the past, but not much.  His fever came down and he rested pretty comfortably the rest of the day.
• Thursday around 3 am, Matthew woke me up crying uncontrollably.  Then his whole body got really stiff, and ice cold.  It was obvious he was getting the chills, but he also wasn't responsive.  The nurses administered ativan, and 15 minutes later, he came out of it.  At that point he didn't have a fever, but within 15 minutes, he spiked a fever of 104, his heart rate was in the 200's, and he needed more oxygen.  It took us till morning to get his fever under control.
• Thursday late morning, the decision was made to transfer him to Childrens' hospital.  His initial blood cultures were saying he had a staph infection in his blood stream (bacteremia). We also changed antibiotics to reflect the type of infection he had.  Matthew was transferred by ambulance and  arrived at Children's around 12:30.
• Although it was evident Matthew was sick, and I was sure he had an infection in his port, we were still waiting for further cultures to tell us for sure.   Friday, Matthew's port again wasn't working, and the nurses were going to remove the needle and put a longer one in.  When they removed the needle, pus came out of the needle site. We now proved the port infection. Surgery was called and they scheduled surgery ASAP to take the port out.  He went to surgery around 7pm.  
• Since Matthew would not have any IV access after taking the port out, we had to get an IV in him.  The anesthesiologist was kind enough to put him to sleep first, and found 1 vein; in his finger.  They put the itty bittyist needle they had in it, and it went in.  The port was taken out, and at the same time, changed his g-tube out to a g/j tube (in his belly).  We knew he'd need nutrition, and we couldn't run TPN though the finger IV; so we decided the only reliable way to get him nutrition was to put the g/j tube back in.  That allows the food to go straight past his stomach, into his intestines, so he can't throw it up.
• Matthew came through surgery with flying colors; slept all night friday night, all day Saturday, all night Saturday night.  By today (Sunday) at noon, the doctors were concerned.  He hadn't woken up, his belly was distended, he was peeing or pooping.  Lab work was done, a CT scan was done(to rule out shunt malfunction), and lots and lots of prayers were sent up.
• Just about the time every test was done to try to figure why he was sleeping, he woke up.  Woke up smiling!  We threatened him with an enema, and by the time the nurse got it from pharmacy, he had done the job on his own.  We threatened him with a catheter, and 1/2 later he peed.  Thank you everyone for praying!  Keep them up; we still have a long way to go!
• Tomorrow at 3, Matthew will have another port placed, as he still needs IV antibiotics, and no one can believe the finger IV is still working (I know why, though...prayers!) and whenever he gets sick in the     future, we will need IV access.  He is tolerating feedings well so far at 1/4 strength.  I will be happy to say goodbye to TPN. 

I'm not sure how much longer we will be in the hospital, I would think Wednesday would be the soonest. I will try to keep my blog updated.  Now that I am caught up; it shouldn't be such a big task.  I've also got some things to update on from before Matthew got sick, but that will have to wait till we get home as my pictures are there.  

• 
  
•