Wednesday, March 13, 2013

Evan's journey......last part

I left off on the day Evan was extubated, which was January 24th.  What a great day.  He was still on oxygen, but they started to wean that over the next few days. From that day on we got to hold him more often.  It was still quite a challenge to get him out of his bed.  He still had lines in both of his legs, in his neck, IV access, feeding tube, oxygen and all the leads for the monitors.  On Saturday the 26th they were able to remove the lines in his legs, because one of them went bad and one of them was not needed anymore.  We had lot of ups and downs for several days.  His blood pressure got too high again after they weaned him off the medicine and they had to start the medication again.  His cratnine levels were too high and they had to increase kidney medication.  He didn't pee for a long time and we were really worried about his kidney function.  He didn't tolerate his feedings well, so they had to stop them again and put him back on fluids.  I was constantly worried about his vitals and just stared at the monitors.  I believe it was also on Saturday when they decided to try a bottle for the first time, because he had tolerated his feedings well and his oxygen was low enough.  It was such a great moment to hold him and feed him his first bottle of the "Evan cocktail".

 We were still waiting on test results from the metabolic testing, so he couldn't have any long chain fatty acids (they skimmed my breast milk and mixed it with MCT oils (?) and Enfaport formula).  They also had to be careful with proteins due to his kidney function.  The first few days of bottle feedings were tough.  He still knew how to suck, but he kept falling asleep after a few minutes and didn't finish his feedings, so they still had to give him the rest through the feeding tube.  He slowly got better at.  He only got 20min for each bottle, because after 20min he would be burning more calories than he is getting.  Evan was also finally able to move up a room, he was no longer in the last room (I previously explained how they move kids up the hallway as they are less sick).
Here he is in his new room

 He continued to improve really fast and I can still hear the doctors and nurses say that they have never seen anything like it.  They have never seen a kid turn around so fast after being so critically ill.  I am very proud of our little fighter!  On Monday the 28th they performed another renal ultrasound and the blood clot was almost GONE and the kidney function was improving.  They were able to wean him off the Heparin and start blood thinning shots.  On Tuesday January 29th we were moved again to another room and on Wednesday we were officially put on the step down process, meaning they were prepping him to go home.  I remember feeling very anxious, because they were moving so fast.  I was excited, but also very worried.  We still didn't know what caused his heart failure.  The high blood pressure and kidney failure were most likely caused by the blood clot.  On Tuesday night we decided to have a family dinner during shift change and we both left the hospital.  We had no idea that Little Rock was under a tornado warning.  We had dinner with my mom and Hannah together for the first time.  Scott and I headed back to the hospital after dinner to say good night to Evan.  On the way back to the hospital my phone rang and it was Evan's room.  My heart started to beat really fast immediately, because it has never been good news when they called.  It was his nice nurse telling me that everything at the hospital was alright and that they were just waiting out the tornado warning in the hallway.  They have to move everybody away from the windows.  It is no small task to move all these kids that are attached to monitors and drips.
Once we were on the step down process one of us had to be there 24/7.  We were taking care of him like we were at home.  Evan no longer had a nurse to himself, he had to share one.  The were also able to remove his feeding tube and we finally got to see his precious face.
We got to feed Evan all of his bottles, had to change his diapers and give him his medication.  The nurses still assessed him every 4 hours and he was still hooked up to all monitors and still had lines in his neck.  There was not much rest at night between assessments, giving medications, monitors beeping plus they can't turn off all lights since it was still the ICU.

At 3 weeks old (on February 4th) he was finally able to put on some clothes!
That same day we got the metabolic test results and they were negative.  I was able to start nursing him right away.  He had no issues with it, which made me very happy.  No more "Evan cocktail".  The next day he had to pass his car seat test, we had to learn how to give him his blood thinning shots and we had to take Infant CPR.  They also performed another heart ECHO and renal ultrasound.  We met with all of the doctors again and were told that we would be able to go home on Wednesday February 6th.  I was so happy and nervous.

Packing up all of our stuff
We left the hospital in the afternoon of February 6th.  We spent a couple of days in Little Rock to get more comfortable before heading back to Bentonville on Friday February 8th.  

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