This post is LONG, but I wanted to document this experience in my journal and did not want to forget a single thing...so for those of you wanting to hear the entire story behind Paxton's surgery, here you go!
Well, Paxton's surgery did not go as planned. I woke up at 4:45 Wednesday morning to give Paxton an extra feeding before he had to go without food (starting at 5am). I couldn't fall back asleep. I laid in bed, looking at him sleeping. And then I prayed. I prayed so hard that the doctors would know the best way to help Paxton. I prayed that all would go well with his surgery and that we would be comforted. And then I slowly drifted to sleep for all of 5 minutes when my alarm went off (at 5:45) to get up and give Paxton his medicines, pump, get ready and head to the hospital. We got there, checked in and then Cortney met us (since he styaed behind a little to help get the kids ready before a neighbor came over to watch them- THANK goodness for wonderful neighbors!). The doctors and nurses then came in to do their assessments and talk with us. Then came the anesthesiologist who went over all the details of sedating Paxton and intubating him so he will be completely safe during surgery. Paxton has gone through this, unfortunetly, MANY times before. Then we walked him down the hall where we had to hand him over and go to the waiting room. I *hate* that part. Cort and I went and checked in the waiting room, then went to get breakfast and check our e-mails. When we walked back into the waiting room, roughly 30 minues later, the receptionist said the doctor needed to talk to us. She told us everything was fine and Paxton was fine, he just had a simple question for us. Okay. So she called him back to let us know we were back in the waiting room. 2 minutes later, Dr. Snow, Paxton's urologist and person performing the surgery takes us to a private room to talk. He starts with telling us that Paxton was very difficult to sedate. He said Paxton was restless and waking up and difficult, which is not typical for him. Then he said the anesthesiologist was having trouble intubating him. She tried 3 different times with 3 different size tubes and finally got it to work, but Paxton was struggling with his saturations. On a breathing machine? What? The doctors were concerned, and the anesthesiologist was especially concerned. How could so many things be going wrong. This must not be right, they all concured. Maybe Paxton is coming down with a cold and his throat and pathway is swollen? Maybe there is something else going on? Either way, nobody felt right about proceeding. So at this point, there was another small procedure they were doing on Paxton while he was there and they went ahead and did that because he was sedated enough and didn't need to be intubated for that. He was going to go to recovery, then the doctor wanted us to follow up with an ENT to see if there is something going on that would prevent Paxton from being intubated. He needs the surgery, and as soon as possible, but he needs to be able to handle it and handle sedation and intubation without any problems. So he told us to wait until they take him to recovery, we can see him then take him home for follow up with ENT.
Now to say we were disappointed would be an understatement. Cortney and I were soooooooooooo disappointed, discouraged and frustrated. This surgery was the beginning of Paxton not being sick anymore. Not having to take 10 different medications every day, not having an ng tube for those medications...not to mention Paxton would not be getting sick with UTI's anymore or be in any more pain. I mean really, I felt like this was the beginning of him being able to be a pain-free regular baby...and by regular I mean not having to focus on getting multiple things in his body to work right. He should be able to just be a baby!!! BUT at this same time, Cortney and I both felt that because so many prayers were being spoken in our behalf, that this must have been the right choice. We called our families and waited. I had to pump, so I left for about 20 minutes and while I was gone, they came and got Cort because Paxton was ready to be seen, but only one parent could go in at a time. Lucky for him to be the first one! So when I got back, I impatiently waited. When he came back, he said that Paxton was bleeding really badly from the proceedure they had done and that the doctor is coming back in to stitch him up a little. He also told me that the anesthesiologist came to speak with him and told him a few more details about why they did not do the surgery. She told him that one thing after another seemed to go wrong. She explained how they NEVER (well, hardly ever) cancel surgeries...it is a big deal to do so. She said that the tube that she was finally able to get down Paxton was meant for a 6 pound baby! And that air only seemed to be getting to the top of his lungs, but not all throughout. Then Cortney had tears is his eyes as he told me that she said "something told me to stop, that this wasn't right." I felt immedietly this overwhelming feeling that stopping this procedure literally saved Paxton's life. As disappointed as I was, I was so grateful that she listened to that voice and stopped! The urologist and resident doctor (who have been working with Paxton from the beginning) both said they felt that things weren't right and when they all talked together, it was overwhelming that everybody felt the same way. Wow. So I tried to see Paxton after this conversation with Cortney (he had come out so I could go in) but when I walked into the room, everyone quickly shooed me out. Paxton was screaming and there were nurses/doctors all around him and they were saying that they needed to sedate him again, take care of the bleeding and it would be best if I weren't there. I am glad because hearing Paxton scream like that, of course I burst into tears as I left.
About 15 minutes later, the doctors came back into the room to tell us that he had a clot that had stuck to the incision of the procedure they had done and though they thought he was sealed, once they wiped the clot he started gushing blood again. So they stitched that area and the bleeding had stopped and Paxton was fine. However, he had lost quite a bit of blood, so they wanted to check his levels to see if he might need a tranfusion. Finally I got to go back and see him and by this point he was sedated and VERY pale. He was so weak and it broke my heart. I was just sad. Sad that this was what it came to for him, without even having the surgery he was supposed to be having! His first set of blood levels came back and he was really low, but they wanted to wait a few hours and check again to see if they would go up on their own without a transfusion. So we we waited, and this is the point where reality really clicked in for what could have happened to Paxton. The anesthesiologist came in to talk to me. She told me basically the same thing she had told Cortney. She told me that it seemed like so many things were going wrong that don't typically go wrong and that she never cancels surgeries like this. She said similar things have happened before, but usually they can be fixed and then they moved forward. Then she looked into my eyes and said, "I know this sounds crazy, but I think God told me to stop." She followed that with the fact that she was so worried about Paxton and thinks that maybe the fact that he lost so much blood from his other procedure means he would have bled too much in his major surgery, causing the unthinkable.
My heart was overwhelmed. She DID save Paxton's life in my eyes by listening to that voice!! I knew all the prayers that have been poured out to our family, all the different temples our names have been put in (so many people have told me they have done so!), all the fasting and well wishes and thoughts for us were the reason those doctors chose to stop the surgery! I am SOOO grateful.
So after the 2nd set of blood work came back, his levels had gone down even more and there was no question he needed a transfusion. It is amazing how halfway into the transfusion Paxton's coloring came back and he was sleeping more comfortably. I was so relieved. In the morning I made an appointment with the ENT for Thursday, the soonest available and we packed up and headed home. Paxton has still had some pain from his other procedure and has been fussy, but is mostly himself and we are so glad that he is WHO HE IS. I was thinking about how particular Paxton is and the Urologist and his Resident, both whom we love, have said so many times that Paxton truly runs the show and does things differently than any other child under the same circumstances....which makes things both difficult, but also thats what makes him extra special. And I can't help but think how Heavenly Father knows each individual person and their needs and how lucky we are that he knows Paxton and could help him through this difficult situation.
So now we still have a PICC line, he will continue to have it until they decide when something else will be done. We see the ENT on Thursday and we will go from there. I am SO glad last week is over, so overwhelmed with gratitude for this precious gift we have and just grateful for life. A special thanks to all those who helped us get through this week- from babysitting, to meals, to prayers, to more of all that! We could not have gotten through this without your help. Thank you, thank you and God Bless!