My Hero

Yesterday after surgery we were able to finally see Paxton around 2 pm.  He was still out from anesthesia so we stayed a few minutes then went to go grab some lunch. By the time we returned he was a mess. Lots of crying, moaning and irritability, not so much from pain as he was on so many pain meds I'm not sure pain was possible, but more from the effects of a LOT of morphine and versed. I think he was a little freaked out by how it made him feel.  He was also experiencing what they call a "Glenn Headache" (the bi directional glenn is the name of his surgery) and the headache is caused by the repair the surgeon made to his heart to allow more bloodflow in the upper part of his body instead of the lower.  The blood now drains from his head into his lungs and sends oxygenated blood to his heart.  The headache was intense and that paired with the amount of drugs he is on just really threw him over the edge.

 The nurses suggested I go home and rest for the night while he was still out of it because he would be more alert and coherent tonight so I did. I went to the hotel with my husband and spent some time with him since he headed home today to take care of our older two boys. This has been exceptionally hard on him and it breaks my heart.  Nana Kimmie stayed with him through the night and took care of business! ; ) He even began eating.  Which is amazing! He is most certainly swollen in the head, face and eyes. This is due to increased blood flow to his head that was not able to happen prior to the surgery.  This morning he was really itchy and flushed as if he had a sunburn which is a reaction from the morphine so he received some benadryl which has worked better to sedate him than all the "big guns".  He had a relatively quiet day. Opened his eyes. Ate some more.  We did find out he has fluid around his left lung. It came as shock, but they are watching it closely. We upped his lasix (a drug that removes fluid from the body) in hopes that it will rid with that, if it does not he will need another chest tube to drain the fluid from around his lung.  We are hoping it doesn't come to this, but will not know until his chest x ray in the morning.  There had been hopes of removing quite a few iv lines and his chest tube today, but we did not do that due to the fluid, which also means I was unable to hold him. It's hard to have him look at me with those big blue eyes and not hold him which I know is all he wants.

We continue to remain in awe of how stoic our boy is. He teaches us every minute of the day what strength really is.  My heart overflows with love for this child that I have been blessed with. He is truly...MY HERO!