I just got home from the hospital. Jamie is staying overnight there with Theo. I stayed up with him last night till about 2:00a.m. and am super tired.
The procedure went really well and he is doing great. He is having some pain from the incision and the tube placement, but as far as I can tell, it only really bothers him when it gets jostled around--like diaper changing or sitting him up if he slides down the pillow. They're giving him his regularly scheduled methadone plus morphine every 4 hours overnight and probably tommorow as well.
They are telling us that he will most likely get to come home tomorrow. When these g-tube placements go well and the child can tolerate feedings well, they get to leave pretty soon. So that's good, it'll just be another thing to feel nervous about learning and doing correctly until we get used to it. It's amazing how used to these things you get--I just have to not really dwell on thinking in detail about what I'm doing--flushing the tube coming out of his chest, pushing meds through a tube in his nose, and now maintaining and caring for the newest tube coming out of his belly--which is placed next to the tube running from his brain into his abdomen...
Anyway--we are really relieved that he is doing so well, especially after the incredible stress of the day. We got there at 7:30 this morning--They called yesterday evening (I can't believe it was just yesterday, it feels like several days have gone by) and told us that he was now scheduled at 9:30 a.m. and was first on the list. So, we were glad not to have to be there at 6:00 and pleased to hear that he was first on the list. We got everything packed up this morning except his medicines because I figured he would be going under anesthesia before he would start to miss his morning dose of methadone and then after that, the hospital would supply all his meds. Well, of course, you know that went wrong. I should've known better. We waited in the lobby area for a couple hours and then went back to the holding area where we waited another couple hours. An emergency procedure had come up that had to be attended to first, which was entirely understandable, I was just concerned about Theo getting hungry and cranky and especially that he had not had his methadone at 9:00. They told us they would order him something to "take the edge off" and forgot about us for another hour. By 11:00 a.m. he was missing his second meal of the day and still hadn't had any drugs. So after having asked twice with no results, I got really upset and nearly turned into Shirley Maclaine in "Terms of Endearment" demanding medication for Debra Winger (if you haven't seen that movie, see it--it's great, plus you'll know what I'm talking about). Finally, they came in and gave him some versed--a medication that puts you in la la land pretty quick and he was fine and then we were fine. I really hate getting like that too--I just don't understand why they can't understand what we might be going through. They took him back for the surgery at almost noon. They told me it would be a couple hours and then he would go to recovery. We weren't allowed to go into the recovery room with him but they would call us as soon as they were getting ready to go up to his room so we could walk up with him. The surgeon was supposed to come out and talk to us after the procedure to tell us how it went. We went down to get something to eat and were gone about 30 minutes. They give you these big round pager things (like you get at Outback steakhouse that blink and vibrate and beep obnoxiously when your table is ready) so they can get in touch with you when it's time for the doctor to talk with you or whenever they need to get you for something. The pager didn't go off and didn't go off and continued to not go off--so finally at 4:00 I went to ask the desk woman to please find out if things were ok. She couldn't figure out who "Theeolonus Figbar--Fegbeck--what is his name?" was, finally located him and said, "Oh, he's been finished, he's up in his room on the 7th floor". I could feel my eyes get all big and crazy, and I almost couldn't form a question, but finally asked how long he had been up there, and the desk woman said, "Just ask the nurses when you get up there how long he's been there". She didn't even know what room. I was incensed. Livid. I mean, who does surgery on a 7 month old child and doesn't come tell his parents how he is or even that he is out of surgery?! And then takes him to another floor, to a room without a number and doesn't tell anybody?!
We went up to the 7th floor and, of course, had to stop first at the security table. They had no record of Thelonius Fueglein in their patient book, they didn't know where he was. I just about lost it and the security guard said, "Just go on back ma'am, and talk the nurses". We found him finally in a room with three other babies. I was so relieved and so totally pissed off at the hospital. He looked really tiny to me in the big crib bed, but he was alert and calm and his color looked very good. He was fine. The nurses told me he had been up there for about a half hour. They finally got the doctor on the phone and he apologized several times saying the whole thing was his fault, that he had been called away to an emergency and he had told his staff not to talk to us becuase he was going to come right down and talk to us as soon as he took care of the emergency situation and then he simply forgot. So, there we were. I was still really upset. Everyone on the floor was super nice to us after I expressed my frustrations and the nurses and the other doctors on the floor seemed very sympathetic. They gave us a private room. The staff have all been extremely attentive all evening. Theo is doing ok and that's the most important thing. So that was our surgery adventure for the day.
Tomorrow we will learn more of how to take care of and use the tube. The one that is in there right now is a temporary one --kind of like starter earrings that you get when you first get your ears pierced. You have to leave the starter ones in for a while until the holes heal up enough so that they won't be sore and won't close up when you put the earrings you like better in the holes. We will get a "button" in a few weeks--the button is like the better earrings that you like instead of the ones you have to have because of the new piercing. Right now there is a long flexible tube with a cone thing on the end hanging out of his belly. Once the site heals, that tube will come out and we will go into the clinic and put in a shorter tube with a little button thing that sits flush with the skin so there is no tube thing hanging. When it's time to eat or give medicine you just pop the little cap off the button and insert a tube with an end piece called a key that then turns to open the button and then just put the food or medicine in. When it's done, you turn the key part back to lock, remove it and put the cap back on the button. That will be in about 3 weeks or so. Changing it won't be a painful thing at all--it will really be like changing an earring. We will also have an emergency kit at home to put in a new one ourselves just in case the tube comes out. They told me that until it heals though, if it comes out, we have about 30 minutes to get a new one in before it starts to close up.
It's a wonder people who are piercing crazy don't get this procedure done just for a new, shocking, avant garde body art thing.
I'm really tired now and am going to bed so I can get up early and get to the hospital with Jamie and the baby.
Keep sending us the positive thoughts and your love---
Karla
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