Still healing. This past week has been tough. no two ways about it. The surgery took more out of Alex than we ever expected. He has slept more, cuddled more, cried more than we can remember. we are still dosing tylenol and motrin pretty much around the clock. We are almost a week out from surgery and have been now trying to let him sleep longer at night before waking him to give him his medicine but he's still letting us know he needs it. His voice is still hoarse and to hear him cry, cough and cry more because it still hurts him, its heart breaking. We try to explain that he WILL feel better, its just taking a bit longer. I hope he understands somehow. Up until lastnight, he was still on 4x the amount of oxygen then he was on prior to the surgery and we were worried that he was still having so much pain, not able to drink or eat much AND needing the extra oxygen. We coudln't help but wonder "is this normal?". We called ENT, they suggested we also talk to his pulmonary doctor and then they wanted to check him out at his pediatrician this weekend at on call.
The good news is that they don't think anything secondary is going on, his lungs are still clear even though he sounds sooooo congested and coughing a lot. They think he is still very inflamed from the surgery and thats why he's having more trouble with the oxygen, eating and drinking. It is sooooo not like our little man to fall asleep on us anywhere, let alone sitting outside on a blanket in the grass with his favorite "zoom, zooms" going by. He usually can ONLY fall asleep if he's flat on his back either in his crib (preferably) or in the car seat (reluctantly). He may eventually turn to his side or roll to his tummy but he always starts out flat on his back, never curled up with either of us. All week he has only been able to be awake a couple hours, sometimes less then before he's resting his head on our shoulder. Part of me LOVES, LOVES it because who can resist their baby curling up into you and you feel the weight of their body relax as they begin to snooze. That part is soooo sweet. The part knowing that he must be so tired and not feeling well to actually be doing that is the not so great part.
I was also concerned about constipation (the SB mommies will soooo get this) because it had been days since he has gone and unfortunately the extra sleepiness, not wanting to eat/drink, vomiting are also signs of shunt issues which can be exacerbated by what? yep constipation. The tubing from the shunt threads down to his belly so it happens sometime that if you're backed up, it can also clog the tubing to the shunt. Not always but it happens and has happened to babies of mamas I know so its running in the back of my mind. Ugh so ofcourse this is on my brain and probably will remain until he's really more back to his sweet sweet self.
They saw him this weekend and decided to put him on steroids (prednisone) for the next week to help with the inflammation and just after one dose, he already seems to be breathing easier, we were able to reduce his oxygen over night already. He's still sleeping a lot more than his normal but when he's awake, he has just a bit more pep. Oh to see a smile from him after days of not is an even more beautiful thing than usual. I swear its his way of telling us its all going to be okay. It almost feels like we have been back at the newborn stage where we are awake every hour, every couple of hours while he wakes, or the alarm beeps or just that instinct of needing to check that he's okay. Its been such a long long week in the way of "did we do the right thing?" "did this surgery do anything to help him?" "when is he going to feel better?" "Is this really JUST the recovery?" "what if something else is wrong and he's trying to tell us and we are not getting it?" ugh. I hate the worry train!! But then he looks at you with this all out grin and everything is right in the world again!!! (this definitely needs a pic here so will upload one later)!!
oh and the other part of our exhaustion? We've had to show our house 4 times in the last week as well and today was the open house. so no "I'm too tired to do the dishes right now", or " its okay if the laundry is piling up a little, or that the floors need to be swept", no "I can get to that later after we get a good night sleep." No we've had to keep it model ready no matter what. Its actually been good for us believe it or not. It feels amazing when your house is clean and organized and uncluttered. You really do look around and feel a little less stress, a little more relaxed because the space around you is less of that. really. Our house IS nice. Why didn't we live more like this before? Then the boys get up and then the trail of stuff starts all over again, and well we can just blame the mess on them ha,ha.
oh and stay tuned, tomorrow is a big, big day that we've been waiting for! Alex's mobile stander is coming!!!! I am so anxious to see what he thinks of it, how he does in it, praying he likes it!!!