March 19th..   My first day back to work after a 2 week stay at Texas Childrens Hospital.   On Thursday March 1st, Hudson was up all night with horrible abdominal pain, gas and fussiness.   At 4am the fever set in.   I figured we had caught our first cold.   At 6am his fever was at 102 and we decided to call the Dr. office and try to talk to a nurse or get an appt scheduled as soon as they opened.   The nurse who called back asked to hear him breathe and I held my breath as she listened over the phone.  I could already tell in just the last 30 mins he was breathing different.  Sure enough, she called the pediatrician and called back saying the was concerned about the grunting noise he was making and we should go straight to Texas Childrens instead of coming to their office.   I hung up, threw on some clothes and started out the door when the phone rang..  it was the nurse she called back to say she would feel more comfortable if I called an ambulance to get there quicker.   PANIC SETS IN!

By the time we got to TCH Hudson was steadily getting worse.  At this point we could finally tell that something was hurting him in his stomach.  With every breath there would be a small grunt and he wouldn't take deep breathes due to it being painful.   They gave him morphine, took blood, urine and stool samples and then it was time to wait and see what came back.  

Nothing came back!  Whatever it was it was not bacterial but they went ahead and started an IV with antibiotics due to some of the test wouldn't be back for 24 hours.   Fever is still high and we were on our 6th hour in emergency room.   Finally at the end of the day we were told they were moving him to the NICU to keep a closer watch on him.  The CF team came down to visit and check on us.  The Pulmonary team would be the primary and Neonatal would be the secondary team.  

We spent the first night in the Neonatal sleeping in a chairs by his crib.    You could tell he felt bad and only wanted to sleep, we were not allowed to feed him anything in case surgery was necessary.   With children with CF a huge concern is obstruction in the intestines.   We did an Ultrasound and it showed nothing.   The chest X Rays showed nothing.   3 days later we still had no answers.  All test had come back negative for a bacterial infection.  It had to be viral.  

Day 4 and 5 Hudson showed improvement.  Michael and I were getting some sleep at the Ronald McDonald house.   It seems we were making progress and then at the end of the night Hudsons fever would spike back up and we would go to our room scared and confused as to what was going on again.   The nurses did not want us holding him all night so that they could monitor him.  You see the night nurses probably hated us considering we sat with him in our arms ALL day long.  I'm sure it wasn't easy for them but who cares!  That's my baby!  

Day 8- After 48 hours with no fever and the fever came back.  They are now assuming we have caught something while being in the hospital.   They re ran all the test to check for something bacterial.  The chest X-ray came back with a slight change on it.  At this point with the fever and change in chest x ray they have decided to treat this as a CF related infection.   From testing his sputum, Hudson was growing MRSA.  Now this is normal for kids with CF and sometimes it grows without causing any problems and sometimes it causes problems.  The Drs have decided we are going after it and treating.   Now we know what's wrong but Hudson won't eat.   After taking a few sips he would scream out in pain.  More test..   we did a upper GI and found he was having reflux.  Not the reflux where you spit it up but the formula was going from his stomach to his esophagus, back down and up over and over again.  So now we are going on a medication for get food out of his stomach faster into the intestines and adding in prevacid.  Lucky for us they found an antibiotic that the MRSA was susceptible to and we started treatment immediately. 

They have decided since we would be here for treatment for 10-14 more days the best thing was to do was insert a PICC line.  This is a IV that runs up the arm into the chest.  It is very thin and put in under close watch in radiology.   He handled it like a champ and as you can see in the pic above he constantly wanted to show it off!

Over the next day or so we were moved onto the Pulmonary floor-14th.   This was quite the change for Michael and I.  Even though I thought we weren't getting any sleep at the Ronald McDonald house we really weren't now!  We no longer had a nurse watching over him 24/7.   We fed him every 3 hours (due to weight loss), the nurses came in every 4 hours and checked vitals and his antibiotic ran from 1am to 2am.  Respitory comes in at 8 am and 8pm (actually more like9) to do breathing treatment and percussions.   Nope, no sleep here!  We are completely drained and exhausted but Hudson was on the mend!

Day 12- Hudson has finally started gaining weight..  his cough is decreasing.   If we gain weight over the next 2 nights there is a chance we can go home and finish treatment.  

Day 14- The Dr. came in and asked me "How would you feel about spending the night in your own bed?"   I almost cried!!  Tears of joy of course.  My mom and I packed up that room in record time!

Thursday March 15th- WE ARE HOME!   Hudson is back to eating 6 oz with every feed.   He is sleeping good and seems to be very happy.  Hudsons daily medications now include Creon (enzymens prior to every feeding), Aquatek (multivitamin 1X a day), xopenex (breathing treatment 2 X a day), prevacid (3 X a day), gas medicine (4 X a day) and 2 antibiotics one of which we will stay on (3 and 2 X a day).   This antibiotic we will continue you on is used to get the food out of the stomach quickly to the intestines. 

If I've ever thought I've been mentally and emotionally tested it was never on the level that these 2 weeks put us through.   The first 8 days of not knowing made us feel helpless and scared.   I don't know how I would have gotten through it without Michael.   My husband is a strong, loving man and he helped me hold it together and get up again every morning.   We are so thankful for our friends and family who visited and brought goodies.  I think one of the hardest things was knowing this is not our last trip to the hospital.  We know its bound to happen but at least we are hopeful it won't be in the next couple of years!  We will be more careful and continue treatments.  All I can say is.. Wash your hands people!   Germs spread fast!!