Setback

So it happened again. I got to share our lovely happenings of last Monday only to have Paxton on the verge of some downtime again. He was well enough to have his surgeries on Wednesday, as scheduled; however, soon after, Paxton really took a turn for the worse. :) We sort of called in some emergency prayers with the family on Saturday as Paxton had had a major setback.

In surgery on Wednesday, Paxton had his gastrostomy tube placed, and three hernias repaired (which the doctor said are actually harder to do and more painful to heal). My precious boy came back with 6 total incisions, and as pale as ever (as is typical after surgery). The first night he seemed to be doing fairly well, as he was loaded on a lot of pain and sedation meds. He came back to the NICU on a ventilator as his respiratory drive was decreased and he needed to be able to rest and heal. He was back on his trach mask Thursday morning.

on our way to the OR, getting the team to smile!

this time I got to go back with Paxton to see him be put to sleep. hard and nice as well.

paxton back from the OR on the ventilator again.

6 incisions (one in his belly as well)

all the many pokings, proddings, etc. after surgery... never good.

Paxton on Thursday, the day after surgery.

sick but still okay on Friday.

Thursday was actually okay, but by Friday Paxton was wheezing so much, having huge retractions, and having so much mucous constantly fill his trachea.  We were suctioning so often that we began getting blood every time. This is a little freaky to see but I just told myself it would get better. If we could only suction less it would have, but he could barely breathe through that little opening in his tracheostomy tube. In the meantime... 

Paxton was struggling a bit and I begged to hold him, hoping it would comfort him. He slept for a while and then I began to feel something wet under him on my leg. When I opened the blanket and saw blood all over I was very nervous! Was his g-tube bleeding out? Fortunately Paxton had only kicked his IV loose from his foot and the blood and IV fluids had been leaking out. What made it even less comforting was having to watch him be poked 7 more times to replace that stinkin' IV. They finally got it in his scalp. Then they had to try again to give him an art-line (an IV in an artery, measuring blood and drawing blood coming directly from the heart). More struggling to get it in the right spot. Paxton had had it and was exhausted after, in a way I hadn't seen him since August 5th: pale, jittery and shaking. He was sort of asleep but not in a peaceful way, in a very overwhelmed and almost shocked way. It was very sad for me to see him going through all of this yet again. Just last week I was sitting him up in my lap and feeling such progress. 

We kept having to redo blood draws, x-rays, etc. and things just weren't going smoothly. Paxton was desatting even on the vent, with his heartrate dropping to 80. His x-rays were showing deflated lungs. At this point Paxton went back on the ventilator. He was grateful for it and completely let the vent do all the work for him. He needed the rest. All signs were showing Paxton was very sick and he started antibiotics Friday night.

Saturday after much commotion, puffy and out.

Saturday was the worst. When I walked in he was literally purple. He was deserting in his sleep, even on the vent, and was very swollen. Our nurse thought he not only had the pneumonia in his lungs, and the staph infection in his trachea stoma, but also that he looked and acted septic (an infection in the blood). We still hadn't heard back on his labs to confirm that or not. Paxton was still struggling to breathe, with long expiratory breaths. Albuterol did not help. He had his 6th blood transfusion. Our wonderful nurse, Micheala, thought it might be worth it to try the next size trach tube. Thankfully she was right! However, within the next half hour Paxton desatted down to 9, with heartrates down to 49. It was the most scared we had been in a long time, literally watching him go blue and lifeless right before our eyes! I was standing next to him both times and trying to shake his arm during the second one (as we were all stimulating in any way possible), I couldn't believe how blue and immediately stiff Paxton's arm was. I couldn't even bend it. It was awful. Thankfully, we have amazing nurses and respiratory therapists that work together so fast to manually resuscitate and keep Paxton with us. That was the last of those awful events we have seen since Saturday. And I hope we are no where close to that again!

Paxton is finally recovering. Getting more meds and sleep. His blood pressure has been abnormally high (126) and we are hoping all of this combined is not an indication of pulmonary hypertension, again. Echo today to check. He's even having some calm awake times again. Definitely better. 

So thanks again for your love and prayers. He looks quite different right now than he did last week when he was filmed for the news. Such is his story! See a glimpse of it on KSL tonight at 10pm, if you wish. 

Love to you all, and to our sweet Paxton! Our hearts are always with you, angel boy!