So...Riley was discharged today. And I will confess...I have known it was a possibility since Wednesday evening. However, I felt it necessary to keep it a secret, mainly from Riley himself!!, until it actually happened. It's always at the very last minute that things go wrong for him, so I thought that maybe if he didn't know something big was about to happen, it would ACTUALLY happen! Lets not forget that on the supposed day of his discharge last week, he ended up in emergency surgery!
Wednesday evening, once he had rocked the eating by mouth, and keeping him new oral antibiotic down, the surgeons told me that as long as nothing (else) went wrong, and he kept up the progress, that they would likely discharge him on Saturday morning. His wound drainage had to continue improving in that plan as well. When he said Saturday morning, my eyes teared up and he said "I thought that would please you". I chose my words carefully. I said "if you tell me that Riley needs to stay here Friday night, for the benefit of him, then that is of course what will happen....however, my 7 year old has his first machine-pitch baseball game Saturday morning at 9am and it would mean the world to him and me, if Riley and I were there to watch it. How late do you do discharges?". He smiled and said "so you want to go home Friday then, is that what your saying?". And I repeated..."if it's best for Riley to stay Friday, then no. But if it's just another day of peace of mind so to speak, I don't care if you discharge him at 6am Saturday morning or late late Friday night, as long as we can make that ball game!".
He said we would watch and see, but if Riley behaved, we could go home on Friday. I was a nervous wreck yesterday. Every diaper change, i was scared to look underneath his gauze. Every vital sign assessment, I was worrying about what his temperture would be. Any little thing could be a problem (and still could be). But Riley breezed through it. So this morning, when they came around at 6:45am, he said "what time do you want to get out of here?" and I said, "whenever you'll let us". He said they would finish rounds, he would come back and snip the rest of Riley's stitches, and then get the paperwork done. We would be gone by lunch...if that was ok with me. I cried and said "if we are gone by 12...then I can just make it home in time to meet Travis at the bus stop...he has NO idea that Riley may be coming home today or even SOON.". He promised me that we'd by gone by then. And he lived up to it.
Two small funnies in all this....
1) I twittered last night that someone likes red jello. Riley got a food tray 3 times a day, every day this week since he has been eating by mouth. It was always broth, jello, a drink and sometimes a popsicle. He had refused the jello, always a different flavor, until yesterday when it was red. So he and I split the jello last night, and he ate a lot of it. This morning, when surgery came in to check him out, we rolled Riley over (he slept on his belly last night) and unsnapped his onesie, and the surgeons AND myself about fell on the floor....Riley's ostomy output in his bag was really bloody looking. It's not unusual to see some blood in the bag, as the bag irritates the stoma easily, and so it bleeds, but not that much! I felt my heart sink as I knew that was a big problem, but then I noticed that the wafer (the part of the bag that sticks to his skin) was stained red. Blood doesn't do that. Then I remembered the jello, and just as I was about to say something, I could SEE a little remnant of jello in the bag. Once I told them, and they check him over some more, we all relaxed and laughed about it!
2) Riley wakes up just like me...cranky and mouthy about it. When surgery comes around in the mornings, he always fusses through those assessments, but is social when they come back later after he's been awake for a while. Well beginning yesterday, Riley really began to remember what hunger was, and he let his desire to eat be known suddenly and out of the blue by SCREAMING until I got his bottle ready. That is how he was when he was in the hospital before also. After surgery finished with him this morning(and we had the jello scare), he didn't want to go back to sleep for a bit like he has been doing, he wanted his bottle and he wanted it about 10 minutes prior to letting me know apparently, because he went from fussing about them, to crying to SCREAMING in about 30 seconds. So I set about to getting his bottle made for him, and just as I am about to pick him up and feed him, the surgery group was back in his doorway looking VERY concerned. The red jello poop and now him screaming, when he hasn't been doing that, has them paranoid. Once I popped the bottle in his mouth, and it was obvious he was content and ok, they left. They even said "we are very paranoid over him!". It turned out to be humorous.
So we are at home now. Trying to keep an ostomy bag on him is still a challenge (I think we did 4 changes today between Duke and home). His incision is still an issue, that we have to keep a close eye on. Up till today, he has only had formula and some rice cereal but they said he could go back to his regular diet now, and boy did he love him some baby food today! He has gone from refusing the antibiotic to willingly sucking it from the syringe, and was THRILLED to see Travis. He laughed all the way back to our house from the bus stop. Travis could hardly contain himself when he saw us, and got all choked up about Riley being there. He noticed right away how "small" Riley looked though. Hopefully, we can get him fattened back up soon! The surgeons at Duke don't need to see him again (barring any problems) until January, when we will schedule surgery for him yet again. They have some ideas on how to hopefully make that one truly successful, but of course we are ALREADY nervous over it. We will follow up with the GI department up there in a couple of weeks. The next week or so will be important in the healing of his incision, so we will be keeping a very close eye on that. Otherwise, nothing is new to us about his current situation, just a little bit different. This is obviously not the outcome we wanted to see happen, and it still bothers us deeply what all occured, but he has had 3 leaks in his intestine's, all of which spilled stool and air into his abdomen which is an EXTREMELY dangerous situation. 10-15% of people (regardless of age) who experience such leaks DIE and he has lived through 3 of them, and the last 2 he made look like nothing at all. What an incredible kid he is!
And now....it's time to plan a birthday party!!!
Thank you all for all your prayers and offers of help. Once again, we found ourselves overwhelmed by the kindness of others and do not know how to adequately express our thanks. Please just know that we feel very VERY blessed!
Oh, one more thing...hopefully some good pictures tomorrow.My camera battery died the other day. I never expected to go so long without charging it!