Update

Magnolia is in critical condition.  Surgery was a lot worse than they expected it to be.  She had 6 inches of bowel and colon removed.  It was dead and causing her to be very sick.

To go back......We were planning an exciting trip to TX for the 4P- Regional 4 Gathering.  We planned on leaving KS on Friday after hydrotherphy hoping that Magnolia would be exhausted and sleep for the long car drive.  I was ready to go swimming but Magnolia had other ideas when she woke up from a nap at 10am.  She started hysterically crying, which is not normal for her.  She wouldn't quit or even begin to slightly calm down.  I immediately rushed her to her doctor's office.  The nurse came out to meet us after hearing her cry.  We started to try to figure out what was going on.  She had no symptoms besides the crying other than very little urine output.  They tried to cath her to no avail.  They sent us home with a urine collection bag and told us when we got urine we could just bring it back.  They also gave her an antibiotic shot thinking she had an UTI.  After several hours of trying to get a urine culture I finally got enough.  However in the process she started vomiting and they wanted us to bring her back with us.  After doing some more checking they sent us home telling us they would get in touch with the urine culture results.  We hooked Magnolia up to her feeding pump and slowly dripped Pedialyte to keep her from getting dehydrated.  She started spitting up a little and she was obviously not comfortable.

Getting a slow drip on Friday night.  Notice our RED toenails.  Our OT had us paint them to help Magnolia find her toes.

Saturday Magnolia started to run a fever and her stomach started to get a little distended.  She stopped puking but still was not very comfortable.  Her urine culture came back okay.  By Sunday her stomach was huge. We headed to the ER.

The ER nurse gave her an angel bear!

Daniel, the IV dude, found her one good vein and got it!

In the ER they admitted Magnolia, got an IV started (Daniel you are amazing!) and ordered an abdominal series of x-rays.  The x-rays showed what they though was an illeus (her bowels had shut down).  They did not think she had a mechanical obstruction.  They put us in a peds room and put her on a watch and see.  Her belly seemed to be getting even more distended.  The nurse put marks on her belly and measured her at each vital check.

Teeny tiny hospital gown

Toller came to say goodnight

In the middle of the night Sunday she started puking green bile as well as leaking bile out of her g-tube site.  I called the nurse and quoted the surgeon who placed her Mic-Key button, "Green should never come out of the Mic-Key button or her mouth!" Her stomach also was getting bigger. The nurse said she would call the on-call doctor.  No one was really worried.  She continued to get sick all night and the amount of green bile coming for such a tiny little girl was alarming, but apparently only to us.  Finally we suggested venting her and the nurse questioned putting in a NG tube to vent.  We reminded her we had the g-tube for many reasons and being able to vent was one.  They took her extension tube we brought and attached it to a tiny tube with a bag at the end.  She started to slowly drip bile into the bag. 

notice the tiny tiny tube

A lovely picture after she vomited and squirted out her tube site

At one point Brian noticed the bile in the tube didn't seem to be moving very quickly, she was still puking and the bile was oozing around her tube.  I popped off the tiny tube attached to her extension and bile started POURING out.  I quickly reattached it and looked around for the first thing I could find: a styrofoam water cup.  Within less than 4 minutes she almost had the cup full of bile.

200 ml to be exact!! WHAT?? 

Over the next half hour or so she ended up draining almost 270ml of bile.  The doctor on-call came to check on her.  Brian and I were very concerned about her belly size and the bile.  I quoted our surgeon again.  The doc suggested we wait and see what she looks like tomorrow.  We were not comfortable with that.  He said he would order another set of abdominal x-rays and a renal sono.  While we were waiting for them to come get us for the x-rays I saw our surgeon walk by our room.  This was a different hospital than Magnolia was born at and I forget the surgeon had rights to both.  I was surprised to see her outside Magnolia's room.  I asked Brian to go get her so I could say hi and show her the green bile!  Brian went and re-introduced himself and asked if she would come see us.  Completely unprofessional of us to do that we know.  She came into our room several minutes later and had an incredible memory.  She remember Magnolia and even recalled that Magnolia's stomach is a free floating one.  She was extremely concerned with the bile and Magnolia's overall look.  She was on her way to the other hospital but said she was going to review her chart and order an enema.  She was happy we called her in to visit as she was not comfortable with Magnolia's state.  Our fears were starting to be realized, we were right, this was not okay! We went for x-rays, sono and an enema.  The enema that the surgeon ordered, consisted of not only an enema but pictures taken simultaneously to watch the flow.  We quickly noticed that the contrast seemed to stop.  The X-ray tech called in the radiologist and the two of them explained that Magnolia had an intussusception, basically part of her small bowel had telescoped into her colon. The tech and radiologist said sometimes they are successful with doing another enema to try to force the small intestine back out of the colon.  They were not successful with Magnolia. The radiologist called our surgeon and said we needed to get Magnolia to surgery ASAP.

Waiting for surgery

We were fairly calm waiting for surgery.  We completely trust our surgeon.  In pre-op we were reminded of what a big deal it is to put a girl this size under and how many things can go wrong. We were also told she might need a central line because she was going to need a lot of fluids and her IV site would most likely not hold.  2 1/2 hours after surgery began the surgeon came to talk to us.  She told us Magnolia was an extremely sick little girl.  Her bowel and colon were very dead and she was afraid to try and pull it out. She said it was full of infection and would make her more sick.  She said Magnolia did not handle surgery well and was in critical condition.  Then came the news....she said if we had not stopped her and asked her to come visit.....if we had waited another day or two like the on-call doc had suggested....we would have lost Magnolia.

Magnolia is still in critical condition.  She is very sick.  Her blood gases are getting a bit better but not where they want them to be.  Her heart rate is finally down under 200 bpm.  She is fighting but has a lot going on in her little body.  They also found infected lymp glands during surgery.  Magnolia has picked up a virus somewhere.

The next couple of days are going to be rough.  They want to keep her on the ventilator as long as possible in hopes of not stressing her breathing.  She was given 500ml of fluid during surgery so she is going to puff up like a balloon.

post surgery

sick little girl

We are sitting with her around the clock.  She is an amazing girl and we are so proud of her.