I know I don't keep up with this like I should... Life happens. I did want to blog about palate surgery though. I want to have it to remember, I want Wesley to be able to read it if he wants. His first 2 surgeries were fairly uneventful (lip adhesion and lip repair)... ya know..as uneventful as surgery on a 4-6 month old could be. Palate surgery, was another ball game. I had always dreaded it. The thought brought me to tears. The research I had done, stories I had heard from those who had been through it. It scared me. Big time! Alas palate surgery day came.... I got how I always am before he goes in for pre op at 5am. Don't touch me. Don't talk to me. Don't make jokes. Don't look at me. Don't you DARE suggest going to get food. and Don't LEAVE ME! I'm stoic. I block everything out. It's a normal day at the peds pre op at 5am. I begged them to give him some "happy meds" to relax him. I didn't know if he would have issues leaving me when they took him back but I didn't want to take that chance. Most times he fall asleep in Pre op after they have done all the tests etc and I got to sit there and hold him and snuggle him until it was time for him to go to surgery. All to soon they come and get him and I have to hand him off to them and they leave. I hated it every time. Then we grabbed some food, not because I am hungry, but because I know it'll be the only time that I eat a decent meal until we leave the hospital. I still haven't figured out how to manage caring for a baby after surgery plus eating..so I don't eat. Wesley's cleft was large. We were told to expect lots of pain and a long recovery.
His surgery lasted a couple hours I think ? It happened too quickly for me. I wanted it to last all day. I wasn't ready to care for him after palate surgery. I anticipated how rough it would be. I wanted him to stay with them and have sleepy meds. They came out and I was called into the hall and there he was laying there, trying to fuss. The sight of him broke my heart. Inside his mouth specifically. I won't go into details. We trucked up to Peds. Me, Josh, Wesley in my arms, 2 nurses, carts, cords, IV, monitors.. Like a hospital train. When he got to the room he started having a reaction to some of the meds he was given. He was screaming and crying and nothing would make him stop. I rocked and moved around as much as possible when you are attached to 4 cords and IV's but nothing helped.. I had heard to wear a dark shirt.. I sorta listened and wore a green sweatshirt.. I wish I had REALLY listened or brought a change of clothes. I was a mess. He cried and cried and twisted and moaned and was just generally unhappy. I begged them to give him more pain meds, which, of course took way longer than it should have. He was given 3 different meds to try to counteract the meds he was given in surgery along with pain meds. They essentially doped him up so much he passed out which is what was needed until his body could process all the "yucky" meds. I was a basket case. My whole body was shaking with emotion. It took about a couple hours to get everything under control. I was one big emotional, stoic, mess. Every time I tried to move or pass him to Josh to get a breath of air he cried. So I stayed. The whole rest of the day was spent sliding jello off a spoon into his mouth, careful not to touch ANY part of his mouth. Take jello on a plastic spoon and carefully drop it into a hole the size of a quarter, making sure not to touch any part of the hole. That's what I was dealing with. We alternated that and dropping water into his mouth..drop by drop. That whole day stunk. I couldn't move or put him down. I had to fight the nurses on the fact that he needed his no-nos. Arm immobilizers that keep him from touching his mouth. That was a HUGE HUGE fight. Dr wanted them, Nurses didn't. blah blah blah. That's exactly what a mom wants to do when her child, after having surgery, is constantly crying and in pain.
Finally around 5pm when Joshs' parents came Wesley let papa hold him. So that was a nice reprieve. Plus they brought me a new shirt. I was so emotionally exhausted. So badly that I was shaking. I was definitely the "chosen one". All Wesley wanted was me. And all I wanted was to eat and have some coffee and a good cry. There's no time for crying at this point.
Josh and I usually take turns at night so that we can get at least a few hours of good rest. I took first shift. I had to hold Wesley the whole time. Trying my hardest not to fall asleep holding him (The hospital get cranky when that happens) It was difficult to say to least. I was exhausted. We were told there were no more parent beds and the 'Nice hospital chair" was all we'd get. Things really turned around when a family friend ended up being our nurse. She found a parent bed so at least we could lay down a bit. Brought us food. Kept slushies coming for Wesley. She was a God send! He finally made a turn around at about 1-2am, when Josh was there. Then by 6am he was eating scrambled egg..MAJOR victory. So we got to go home.
The hour long trip home went well, considering. We had to limit his crying for fear of ruining everything. At home for the first 24 hours he lived on my chest. That first night was spent with him on my chest sleeping and me dozing on the couch. I was going on 48 hours of very little rest and major emotional mess! Day 2 was better. He at least slept in his bed that night. The next 2 weeks were full of ups and downs. Good days, bad days, easy days, painful days. I was exhausted. I couldn't figure out how to manage 2 other kids plus him. Getting them to school, home from school. Let alone make dinner.
Everyone assumes that since you are home and he is sleeping at night that things are peachy. They aren't. I had a baby who wanted to be held constantly, I had a husband who was gone a lot, I had 2 other kids to care for plus get to and from school. Not even considering him, his pain, his recovery, There are the emotions mom/dad goes through. Mom has been put through the emotional wringer. Having to hold it all together during all that. Now mom has to hold it together at home because "life goes on" Josh was in police academy and was gone most of the time and I had to somehow manage 3 kids, one in school, one recovering from a big surgery. I was overwhelmed. Big time. The struggles don't end when you get home. It took about 2 weeks, two long weeks, for him to really start acting like himself. I was never so happy as I was when he started acting like himself. At this point it looks like we are surgery free until he is 6-7. At that point he will have his gum line fixed, via bone graft,taken from his hip, and the remaining hole in his palate will then be fixed.
If you know someone whose child has special needs/surgeries/hospitalization, or even just sick with the flu, Help that mom out! Don't assume she's "got it". Make them dinner..not just the first few days, a week later.
Offer to take other kids to school, sports, cheer leading, whatever it may be. Offer to come vacuum, or do laundry for her. As mothers, we can't always 'let things go' especially if we've been in the hospital for 2-3 days or weeks even. People need clothes washed, People need dishes done, People need vacuuming done, When all attention is on the sick or post surgery child, the other children need attention. Something as simple as bringing over some coloring books or Play-dough for them works WONDERS. Offer to come over after all the kids are asleep and let mom and dad take a walk or get coffee.. heck, let them just go sit in their car in the driveway and be in the quiet. A huge misconception is that hospitals send people home after surgery when they are all better. Not true. They send people home when they are stable and eating. All a person has to do to go home is eat/drink/go to the bathroom. There's major recovery done at home.
I am so blessed to have my boy! There was a time when I didn't know if we would ever have any more kids. I would go through everything 2 times over again if it meant I got to see my boy smile and laugh with me. Best thing we've ever done is to have that boy!
