I pretty much came home from the hospital with my very own 240 lb baby. He has to be fed (and drugged) every 2 hours. He can't get around on his own very well, he drools, and pretty much near everything has to be done for him. I have to watch the color of his pee and other signs for dehydration, clean his teeth, replace his rubber bands, blend his food, fill his food syringe for him, and the list goes on...On the upside- no diapers!
We staggered his meds so pretty much every 2 hours he was getting something- Oxy or Motrin. This meant for LONG nights with very little sleep for me. I had to measure and suck all his meds into the syringe and mix in juice too. He can't stand the taste without juice. So by the time I get everything set, him drugged, and then everything cleaned back up. I had about 1 hour and 30 mins to sleep until I did it all again. Seriously feeling like a nursing mother again.
Our 5 and 8 year old boys were home with us. Luckily my MIL kept our 2 year old for the first 4 days home. I did have to get the boys on the bus but could sleep once they were gone. Ya know, sleep when the baby sleeps!
Making Brad eat proved to be a challenge once we got home, really making him do anything has been. At first all he wanted was Carnation Instant Breakfast- good that is easy enough. But soon, it was just too much milk, he was done. So we moved on to broth soups and juices. (Now we have a small array of food. I will post about food in another blog.) Really nothing sounded good to him so he'd just didn't want to eat. I ended up calling the dietician at the hospital. She told me you can live 30 days with out food just keep him hydrated. So he drank gatorade, propel, and juice. No food for a few days. I know this was not good for him. He needed the protine to help heal- but try telling him this. My thought was if you have to go throught he hassle to drink the juice why not just drink the soup or whatever was blended- takes the same amount of work and you are getting extra benefits for it...but what do I know? After a few days he came back around to food.
He stayed on his full dose of pain killers for about a week. Here is another fun U of M ruining my day and upping my stress level story. Oh that Rx that was so hard to get- well they only gave us enough for 10 doses. I realized this that first night so I called first thing Monday morning. Come to find out you can't have a Rx for Oxy called in, nope we would have to go to Ann Arbor to pick up a new paper Rx. AHHHHH!!! I called my MIL crying- I am not a crier but stress has literally brought me to tears. So she went to Ann Arbor to get the Rx. She made sure they filled it at the hospital pharmacy as well. This bottle would last us almost a week but my MIL would have to go yet a second time to get the Oxy Rx. And also, not just anyone can pick up a Rx for a narcotic, spouses and parents are pretty much it.
One of the major problems those first few days were his lips. They were still so swollen, cracked, and bleeding. Every time he would put the feeding tube in his mouth it would brush past the sore corners of his lips breaking them open again. We found 2 solutions for this. The first- I kept the front middle rubber band off. This way he can slip the tube right in his front teeth and doesn't have to feed it down his cheek rubbing on his lip and breaking his bands as well. The second solution was actually from one of my friends, lanolin. Lanolin is for breastfeeding mothers to keep nipples from cracking and bleeding. It is thick and similar to honey in texture. It formed a nice lip covering and helped aid in healing. Luckily I have a lot of mommy friends and we were able to score 2 small sample tubes for free. If you don't have friends I suggest calling your primary care Dr or a local OB/GYN office and asking them for a sample. I'm telling you like having your own man size baby!
The first week was hard but we made it through. We were both looking forward to his follow-up appt. It was 8 days after his discharge. But once again U of M decided to cause me undue stress and canceled that appointment then rescheduled it for an entire week later.
It really was so much like bringing home a baby for the first time. You know when you are just so scared to do something wrong and not know it, yep that is how I was feeling. I needed that post-op appt to be on its original day. I needed someone to tell me yep, he is doing great, keep up the good work. So when I had to wait an extra week- ah fear. Am I doing something wrong? Is his jaw going to heal improperly because I put the bands on wrong? Oh the worry. Worse case, I like to go worse case...
Glad the lanolin worked and to hear that things are looking up. Hope you are resting a little more.
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