Thursday, May 29, 2014

Finally recovered! (I think)

Last Thursday, two weeks and two days after Zadie's tonsillectomy and two days after her last ER trip for bleeding, she woke up early in the morning and was coughing up blood.  This time, it was coming out of her trach as well.  It was a pretty large amount of bright red blood that she coughed into a paper towel.  I called the ENT's office when they opened at 8 am (the ENT resident on call didn't return either of my calls...hmmmph) and they asked if we could come down there to their ER (at CHOP, in Philly.)  I had already assumed that would be their suggestion/request and I didn't really want to go back to St. Barnabas since they didn't know what to do with us anyway.  So we headed down there.  Since it's a two hour drive, the nurse told me to call en route if there was more bleeding and they would possibly reroute us to another, closer hospital.  Luckily, we didn't need to do that.

CHOP's ER monitored her and the doctors told us they were deciding whether to take her into the OR to try to figure out exactly where the bleeding was coming from and cauterize the area or just admit her for observation.  Either way, she was not going home that night.  One of the doctors told us that bleeding is normal after a tonsillectomy, although it's rare, occurring in about 1% of cases.  When bleeding does occur, it's usually earlier in the recovery period, around 7-10 days post op.  And even though bleeding is normal, it's always taken seriously because of where the tonsils are located.  Because of the OR possibility, they wouldn't let Zadie eat or drink anything but clear liquids.  The worst part was her getting an IV.  They were good enough that they got it in on the first try, but it was pretty awful.  She was hysterical, and kept crying "Mommy, Mommy!"  I felt terrible.

Sleeping in the ER

She finally got into her room around 7 pm.  We decided BJ would go home with Jonathan and Beatrix and I stayed with Zadie.  It's really hard to be so far away from everyone!  On Friday morning, they allowed Zadie to have regular food again and she ate a bit and drank and was cleared to go home, although we had to wait awhile for BJ and the kids to make it back.  Traffic was terrible thanks to the start of Memorial Day weekend.

Feeling pretty good

Since Thursday morning, there has been no more bleeding and (knock on wood) I think we're in the clear!

Tuesday, May 20, 2014

14 days post op

Zadie had her tonsillectomy two weeks ago today.  She is eating and drinking pretty much like normal, she hasn't had any pain medication for over two days, and her breath smells much better.  So I figured we were past the whole recovery period.  Then this morning, I walked into her room to check on her one more time before work and I see this:

It was pretty shocking to see the big blood stain on her pillow.  She didn't have a night nurse last night, but I do check on her periodically through the night, and she's hooked up to a pulse ox that alarms if her heart rate goes too low or too high or if her oxygen levels go too low.  She had a quiet night, and she must have had her head on this stain the first time I checked on her this morning, because I definitely didn't see it.  BJ checked on her in the morning as well and didn't see it.  I noticed dried blood on her lips, so I could only assume that the blood came from her mouth.

I called the ENT's office when they opened and the nurse there asked how big the blood stain was, and when I described it, she said that Zadie should be looked at in the ER right away.  She said while it wasn't usual to have bleeds that long after the operation, it wasn't unheard of.  So once again, we go off to the ER!

Zadie really hates the hospital now, and cries even when they're putting the hospital band on her ankle and when they're weighing her.  She was really upset after getting weighed, and that's when the tech took her temperature with the forehead thermometer, and it came up as 101.  Zadie's nurse and I were both surprised at that, since she hadn't had a temp earlier.

When the doctor came in, he didn't really know what to do.  He looked at the tonsil area as well as she would let him and said he didn't see any blood.  He listened to her lungs and asked about the congestion (she has a bit of cold/allergies right now).  He suggested a chest xray to rule out pneumonia because of the "fever" and her congestion!  I suggested that we try the temp again when she's calm before we go running to get a chest xray, because I was pretty sure she did not have pneumonia.

After that, he really didn't know what to do, and even asked me who he should call.  When I hesitated, he said, "well, since CHOP is so far away, maybe I'll call the pediatrician."  I told him the ped is not going to know at all what to do, so CHOP is probably the best bet.  Then he asked me for CHOP's phone number.

Later on, the tech came in to take Zadie's temp again, and it was 98.2.  I was glad that I knew enough not to just immediately agree to a totally unnecessary chest xray!  Meanwhile, he had consulted with CHOP, and their suggestions were the same as a week and a half ago, transfer her to CHOP (no thanks...just for the distance) or admit her for observation.  This time I asked what we could do to avoid the admission.  We agreed that we would hang out in the ER for a couple of hours and see how it goes.  And Zadie entertained herself!

It was clear that Zadie was quite well, so she was discharged with a "You know where to find us, we're always here!"  

We don't really know why she had more bleeding.  But hopefully that was it!

Sunday, May 18, 2014


It's been a rough week!  Zadie had her tonsillectomy at CHOP on Tuesday.  She was scheduled to stay over one night.  The whole family went down to Philadelphia for the surgery.  She was scheduled later in the day, which was nice for getting a later start, but since she had to fast for the surgery, we all had to fast!  The surgery went fine.  Her adenoids had grown back a bit, so Dr. Javia shaved them down again.  I know that adenoids can grow back, but it's only been seven months since her adenoidectomy!  I hope they'll stay small.
Immediately after surgery, before she woke up

Cracking a little smile! A couple of hours after surgery

The plan was for BJ to stay in the hospital with Zadie overnight.  Jonathan, Beatrix and I were lucky enough to get a room at the Philadelphia Ronald McDonald House.  I will write more about the RMH in another post, because it was such an amazing place.  It was my first time at a RMH, and while I've heard nothing but good things about them, I just couldn't believe it.  For a "suggested donation" of $15 (meaning they will take less if you can't swing the $15), you get a room that's just as nice as any hotel, plus a fully stocked community kitchen that's open 24/7 and several play areas for the kids.

Jonathan and Ronald

Zadie required a little bit of oxygen overnight while sleeping, which is not unusual for her after a surgery or when she's sick.  We're fully equipped with oxygen at home, so this didn't concern us.  Of course, the hospital wanted her completely off oxygen before she was discharged.  I understand their position, but for a kid like Zadie, to keep her in the hospital just for something like that (when we can perfectly handle it at home) is silly.  She was drinking fine, which was the big requirement.  They had also put her IV in her foot, which really bugs me.  She's almost 3 years old, potty trained, and she can't get up and walk around!  She's always been very hard to find a vein, but I think they could have tried harder to find a vein in one of her arms/hands.  They do it once the kids are under anesthesia, so it's not like they're fighting a wiggling child.  I kept asking them about taking it out, but they wouldn't take it out until they knew that she was being discharged.  But, I wasn't going to let them keep her another day if that meant she was confined to the bed/chair that much longer!

They finally released her and we were on our way.  I was kind of (no, really) missing her Gtube, just because she was really fighting us to take her pain medication.

Thursday and Friday (two and three days after surgery), she fought the pain medications really hard.  We had to force her to take it just about every time, so she definitely wasn't getting full doses.  Probably because of that, she wasn't drinking as much as she should have been.  So it was a bit stressful.  She was drooling horribly a couple of times, which indicated her pain was out of control, since she wouldn't even swallow her spit.  I felt bad that we weren't helping her more.

Friday evening, she took a late nap and woke up about 7 pm, very miserable.  She was drooling and I went to wipe her mouth when I noticed bright red blood in her mouth.  Everything we were told and all the paperwork we were sent home with said any amount of blood is cause for concern and to call the ENT immediately.  She coughed up a big load of mucus and it was streaked heavily with blood.  I called the ENT resident on call (since it was 8 pm on a Friday night) and as soon as I told her what was going on, she said, "you have to take her to the nearest ER right now."

Waiting in the ER
So off Zadie and I went.  There was no more blood by the time we were at the ER, and the ER doc looked at her tonsils and saw no blood back there.  He said he'd call CHOP to consult with them.  I figured that they'd send us home.  I was wrong!  They wanted to admit her to keep an eye on her in case she started bleeding again.  Apparently, sometimes there's a small bleed and then later on, a larger bleed.  I would normally fight against her being admitted, but I had done enough googling while waiting that I was scared enough to agree.  I read about kids who had died from bleeding to death after a tonsillectomy.  The tonsils are very close to major arteries, and sometimes, when the scabs start coming off, a kid can bleed out.  A friend of mine messaged me on Facebook to tell me about a scary experience her daughter had after her tonsillectomy.  Very scary.

Like she owns the place!  Waiting for discharge, roaming the halls.

The hospital kept Zadie until about 3 pm on Saturday.  There was no more blood, and she was drinking pretty well.  We had finally gotten to a point where she would take her meds willingly if she could give them to herself (push the syringe), so from then on out, things just improved.  She would take her meds when she was supposed to, she was eating a little here and there and drinking better.  We started gradually spacing her meds out longer and she did well.  Yesterday, Saturday, about 11 days after surgery, was the first day she didn't have any pain meds and did great all day.  She's definitely lost weight but I'm hoping she'll re-gain what she lost.

Next up, another sleep study, which is scheduled for July 10.