Wednesday, March 6, 2013

Evan James Journey Continued

Sunday January 20th was a day of rest for everybody.  This was the day after he was intubated and moved to the CVICU.  I remember the night before that I thought about not pumping anymore.  I am so glad that everybody encouraged me to continue.  I can't believe I even had those thoughts, because it would have meant that I gave up on him.  The stress of the entire week finally caught up with me and I was completely exhausted and my body was hurting.  I realized that I needed to take care of myself, so that I can be there for Evan.  I rested for a good portion of the day (my doctor prescribed me something to take the edge off) and went to see Evan in the afternoon.  I was really worried to see him intubated, but he actually looked so peaceful.  You could see that his heart did not have to work so hard anymore.  It was a big relief to me.  They performed another heart ECHO that morning and it already looked a little better.    He was now sedated, so he slept pretty much all day and he was still under the bili light.  He was on heart, kidney and blood pressure medications and morphine.  The blood pressure medication was finally working and his blood pressure had stabilized.  By then all of the tests for infections had come back negative, so the took him off all of the antibiotics.  We still had no idea what was causing his heart failure.  His kidney function was also a big concern by now.  I believe it was the next morning (Monday the 21st) when they did another renal ultrasound and discovered the blood clot in his descending aorta.  He was put on Heparin (blood thinner) right away.  The doctors told us that it could take months for a clot that size to dissolve.  They discussed the option of using a clot buster, but the risks were too high.  We were also worried about parts breaking off and causing damage. The clot also caused restricted blood flow to the kidneys, which explained the kidney damage.  His kidney function was monitored closely (urine output, labs and ultrasounds).  The doctors were even discussing dialysis at some point.
On Tuesday January 22nd we thought for a short period of time that we had found some answers.  He had two positive tests.   One was for the CMV virus and the other was for a rare metabolic disease.  Both were not good scenarios.  They repeated the test for CMV and it came back negative the second time around.  They believe it was a false positive, because none of this symptoms were matching the CMV virus.  I just now found out that the anti viral medication they would have given him has really bad side effects.  They were also very skeptical of the positive metabolic test, because it is such a rare disease and once again he didn't match any of the symptoms.  They decided to repeat that test too, but it would take a while to get the results back.  So, we were back to square one.  By now the doctors were hoping that we will never find the cause of Evan's weak heart.  They had already tested for all of the common reasons and anything they would find from now on would not be good news.  It would be a rare disease or something that would have long term effects.  I am really proud of myself that to this day I have not googled any of Evan's conditions, tests or medications.  I know it would just be upsetting to me.
We had lots of ups and downs for a few days.  It felt like we were getting at least one piece of bad news for every piece of good news we received.  I still broke down every time I walked into his rom.  How could my perfect little boy be so sick?  He had lines in his neck, belly button, both thighs and an IV. He also had a breathing and feeding tube plus all of the leads for the monitoring.  It was just so heartbreaking to me.  On Wednesday January 23rd they discussed potentially extubating him on Thursday.  They wanted to repeat the heart ECHO in the morning and based on the results they would make that decision.  They also warned us that they may have to re-intubate him, because 50% off the time the babies can't breathe on their own after being intubated.  Thursday January 24th was a great day.  They were able to successfully extubate him, wean him off some of his medications and we finally got to hold him.  I can't even describe how good it felt to hold him.  It was no easy task to get him out of his bed with all of those lines attached.

He looked so much better already after removing the breathing tube
They were also able to swaddle him for the first time, which he really liked

Finally in my arms where he belongs
Scott was not at the hospital when they first let me hold him.  He was not happy with that (I don't blame him) and decided to come right away.  The grandmas got a picture with me holding him too.
And now Scott

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