So Justin had about a .3% chance of being born with DS and it happened. He had about a 1-3% chance of having his tonsils open up and bleed when the scabs fell off, and that happened too.
Here's how it all happened...
Sunday night I went into Justin's room around midnight and I noticed something dark on the sheets. Justin also seemed to be breathing sort of watery so I took him into the bathroom to blow his nose and wipe his face. When I looked at the kleenex, it was dark too, so I turned on some lights and saw that it was blood. And then I saw that his face, PJs, lovey (affectionately known as "bee") and hand were covered with blood too. I went to wake up Randy so we could pow-wow and decide what to do. That was easier said than done. It took four "Randy"s of various volume levels and an arm shake to wake him. He held Justin while I searched for the ENT phone list sheet. I found it and made a call to the on-call doctor. She said that in a small percentage of cases when the scabs fall off, around 7-10 days post-op, the tonsils start to bleed. So she said to take him to the ER. Blood was running out of Justin's mouth down Randy's shoulder while I was talking with the doctor, but he was calm at least. I asked if we should come to the hospital where we had surgery or if the closest place was best. She said we should come down to them if we could make it.
So then I had to find someone to come spend the night with Travis. Again. The second time in less than a month. Does everyone go to the ER as often as we do? Is this normal???
Our awesome friends came (same ones as before...they are going to start blocking our number, especially between the hours of midnight and 6 am) and we were off. Justin was fine so we decided to make the trip down to the surgery hospital.
The ER brought the usual tests and a stick down the throat to check his tonsils. Quite unsuccessfully. The ER docs called up to the ENT group and a doctor from there came to try his luck. At this point I started to get mad. Not at the doctors, but at God a little bit. Justin was screaming, crying, looking at me pleading for me to make them stop and I couldn't. I mean, it was what they needed to do to help him, but it's just not right. There are pokes and prods and tests that Justin needs, but this one was not one he needed. This was not something that Justin should have needed to go through and yet, he did. Why couldn't this have been spared? That was my inner discussion/argument with God through this whole ordeal.
Here's the ER. We got there about 2 am so between doctors he fell asleep. Do you like my just jumped out of bed look?
The doctors wanted to know how much Justin bled. That's hard because it was spread out everywhere. And they didn't know how much he had swallowed. If he had swallowed a lot there was a high likelihood of him throwing it up. Several doctors made sure we knew how bad swallowing blood makes the stomach feel and that it might look really bad when it comes back up. I was ready to throw up by the time they were done describing it!
It was determined (by blood test, another needle stick) that he hadn't swallowed very much. (Thank you, tummy sleeper!!!) The bleeding appeared to have slowed so they decided to monitor him and wait for his doctor to come in in the morning. Fortunately, it was her surgery day so she would be there early. They started an IV and began giving him fluids, which was good since he was barely above the dehydration line. We got into a room around 4:30 am and we settled in for a little sleep. Okay, Justin and I slept, Randy watched us and played on the Ipad.
Then during 7:30 rounds they stuck another stick down Justin's throat and found the bleeding had slowed, but still trickling so it was determined that he was in for another surgery to recauterize the spot that was bleeding. The doctor said it was quick and easy and after a couple hours in recovery we would be on our way. We just moved from the room to pre-op where Justin fell back asleep. All the various doctors made their pre-op visits. I asked the nurse if they could put the heart monitor stickers in the same spots as before since I hadn't gotten them cleaned off yet. She offered to clean him up while he was passed out. I enthusiastically agreed! And then for the second time in a week, we handed Justin over for surgery.
We rushed out for some breakfast since the surgery would only take about a half hour. We needed some caffeine! I knew my lap would be called into action and my hands would not be my own for a while so needed some sustenance.
We met with the doctor after surgery and she said that everything went well and this should be it. The chance of recurrence was very slight (yeah, whatever!) She just wanted to keep us for 12-24 hours to make sure he was okay. What! We thought we were out of there!! When we said that everyone had said "easy, out in a couple of hours" she looked shocked and said that she doesn't do it that way. Okay, so we're grateful she's cautious, but bummed that we now have to start planning for what we're going to do with another day in the hospital and our other child who think we abandoned him again!
Recovery went well. Justin found the most comfortable position to be with his chin planted firmly in my chest. Ouch! The things you do for your kids, right?
We got back to our room and enjoyed some TV time. They had changed Justin out of his nasty PJ top, but the gown they found for him was 4 sizes too big, so we had to change him back into his former bloody attire. And by this time Bee had blood, Tylenol, apple juice, and spit up on it. It pained me to give it back to him, but we weren't going to make it otherwise. Randy went and bought me lunch and Justin had some jello. Wouldn't touch the applesauce...
We hung out until around 6 pm and we had seen no doctors so we asked our nurse if there were going to be rounds because we were ready to go. She looked surprised, which led me to believe that she thought we were spending the night. We really wanted to go so we asked if we maybe could see a doctor. We were getting stir crazy in our room so we walked the loop on the floor. Randy was pole master of Justin's IV and I was baby holder. After a scrape on the heel (mine!), Randy got the hang of it and we were cruising. Justin wanted to keep going, but he was getting heavy and he refused to walk. So we sat in a chair in the hall and waited for the doctor.
By this time, Justin was screaming at everyone who came by and even looked his direction. He yelled at the PCAs who took his temp and BP. He yelled at the nurses, and even the poor cleaning people! Of course, he was due for one more stick in the throat before we could leave. The doctor came and did his obligatory throat check, determined we were okay and was ready to let us go, until we mentioned that Justin had not drunk anything all day. A half of a tiny juice box. He was concerned but I said that he wasn't going to drink much during the night so we might as well go home and see if we could do better there. (Where he wasn't yelling at everyone...)
The doctor called our doctor and she agreed so we left the hospital close to 8 pm. Definitely our longest ER visit yet. We took our bloody selves home, cleaned up, watched Monday Night Football, and went to bed.
Justin has done much better since then. He ate 2 hotdogs for lunch on Tuesday and he drank two cups of water. (The threat of a return trip to the hospital might be slightly motivating...) We have definitely turned the corner. The doctor said that it wasn't like starting recovery all over. By the end of the week he should be close to back to himself. I have high hopes, again!
And Travis? Of course he woke up shortly after we left and cried himself into a fit that we abandoned him again. Our friends calmed him down and brought him downstairs and let him lay on the couch. Now it was Ms. Tina and Mr. Rob who came over this time, last time just Ms. Tina. So this time Travis had new audience and after he woke up some he was ready to get up and play. Ms. Tina finally had to say "Mr. Rob, it's bedtime!" Travis slept on the couch and they got the floor!
Such...good...friends!
We are none the worse for wear from our little adventure in the hospital. I think Justin may be scarred though. He usually does so well with all the doctors and he is the best "ahh"er but there was no getting him to let anyone look in his throat. I think it might be permanent. We'll see when we go back for our post-op follow up next month. We did get one good thing out of this trip: a real stethoscope! It was in our room when we left and Randy asked the nurse about it and she said that we could have it. That kind of made things all better with Travis. He had Justin laying on the couch listening to his heart. Then he flipped him over to listen to his breathing. Justin played right along. Maybe that's the trick, let Dr. Travis get him to say "ahh"!
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