Avalon is being admitted tonight for a high fever. No clue how long we'll be in.
All I have to say is...Damn.
Call the hospital for room number Tues morning.
Alicia and Avalon
|June 14, 2005
Avalon is home again!
I'll send more details later...but the sum total is...We're home!
Yippee! Yahoo! Whoopdie doo!!!!!!
Love to ALL of you - you are truly capable of miracles...
Alicia, Nick, Aurora, Ambrosia, and Avalon
|June 15, 2005
Good morning dear e-family! Sorry for all of the short emails the last few days...basically life
has been on the hyper-speed track. Let me see if I can fill in a few cracks for you...(stone
The whole problem started Monday morning...
Avalon was scheduled to arrive at the hospital, for her port re-implantation surgery, at
6:00a.m.. Because I'm still nursing, and Avalon couldn't eat after midnight, I slept on the couch
Sunday night. I also got up at 4:30 a.m. so "the lunch wagon" could leave the house before
Avalon woke up. Nick voiced concerns before I left about Avalon being sick. She hadn't slept
well - she'd been very fitful - always a sign of impending trouble.
Apparantly, when Nick went to wake Avalon up, trouble sign number two was evident. Avalon
had green nose goo. When he checked Avalon in with the surgery nurse, he told her about
the mucous and rough night...but since Avalon had no fever, it wasn't deemed a problem.
Surgery went ahead as scheduled.
As I wrote before, surgery went without a hitch. The procedure took the 1 hour 15 minutes the
doctor predicted, and Avalon was the lucky recipient of a "bra-line" incision rather than
another mid chest one. I thought it was incredibly kind of the surgeon to consider her future
By the time Avalon came back to us in the room, she had already started running a
temperature. I asked the nurses for a Temp-A-Dot (the disposable thermometers they use) -
and registered her at 99.8. She had been her normal 97.4 at check in. Soon after she arrived
in the room, she also began flushing. She turned the same bright red she does with
Vancomycin. (when she flushes with Vancomycin its considered a reaction to the drug - and
its called "Red Man's Disease") I told the nurses, and we began a stream of nurses coming to
look at her.
Since Avalon had a distinctive white ring around her mouth, the nurses were confident she was
reacting to one of the anesthesia drugs, nothing serious. They assured us that as soon as
she began drinking and moving around - the flushing would go away. I was more concerned
with the fever. I insisted we take it again before we left. I told them I'd much rather be admitted
from there - rather than having to go home and come back through ER. Oh no...according to
them (as they ever so condescendingly told me...) her fever was surely from the flushing.
"When you flush, your blood rushes to the surface (no kidding!) and that will raise your
temperature." Really? From 97.4 to 99.8? Sure lady...but there was no point arguing. We
hadn't hit the 100.4 cut off that Heme-Onc uses anyway...so I had no choice but to go home.
Avalon's temperature held steady at 99.8 from 11:30 a.m. - 3:30 p.m. By 3:30, her narcotics
had worn off, and she was in pain. (She actually looked like a tiny Fred Sanford. She kept
grabbing her chest, saying "Owie" and stumbling around.) Since her fever had held steady - I
went ahead and gave her the Tylenol with Codeine we'd been prescribed. A few hours into
the dose, she was still warm - and we knew trouble was brewing. Sure enough, when the dose
of Tylenol completely wore off, her fever began climbing. By 8:30 we were over 101 - so I had
to call in. At that point, the doctor and family both know its a courtesy call - you're doomed to
go in, like it or not.
By the time we were triaged in ER (9:45), Avalon had reached 101.8 - and was utterly
miserable. I took our Tylenol with Codeine with me, so as soon as they recorded her temp, I
was able to give her a dose and help her out. The next several hours were the typical ER
waiting game. Avalon's new port was already accessed, so all they had to do was draw labs,
start IV antibiotics and get us admitted. Those few things took until after 2 a.m. In a
We had a few interesting ER moments. As per normal, they blindly ordered a urine culture for
Avalon. Avalon had not one symptom of a Urinary Tract Infection, but rather than actually
listen to her history - the attending signed off on standard tests. The problem with urine
cultures, is figuring out how to get them from a child who isn't potty trained. That's when they
"bag her bum" like I've described before. However, the bags never work, or if they do...the
nurses don't get around to removing them fast enough...and you lose your sample. After
going through two or three bags (the equivalent of two or three bikini waxes) - Avalon's skin is
raw, there is no culture, and they have to try to catheterize her, which has also failed in the
past. All the way around - its an ugly proposition.
This time, I turned into evil, nasty, she-monster Mommy - and flatly refused for them to touch
her. The nurse agreed with me, but said the doctor was emphatic. My answer? "Tough!" So,
the doctor sent another nurse in to do it. She said, "I'm here to put her urine catch bag on." I
said, "Oh no you're not!" After inviting the attending to get his carcass in there and take it up
with me in person...he saw the error of his ways... No bag, no culture. Moral? Don't mess with
Momma bear at 1 a.m.
We did have one extraneous thing to do before we could head up to J-5. There is a rare side
affect of surgery, that can cause partial lung collapse and high fevers. The symptoms show
up 12-15 hours after surgery. Since that coincided with Avalon's rise in fever, they sent her
for chest x-rays - just to be sure. She profited from that little side trip. The x-ray techs were
very slow, and very sweet. Avalon was on her 23rd wind at that point, and quite friendly. She
chatted with them, and was pointing and talking about their "Tiger! Tiger! Roarrrr!". The
"tiger" was actually a large Simba stuffed animal they had sitting in the viewing window of their
equipment room. They asked her if she liked him, and she said, "Uh huh! Like ly-un!" They
promised her that she could have him if she was a good girl.
I laid her down on the x-ray table, and she immediately put her arms into chest-x-ray position.
Its not her first one...and somehow she remembered. The techs were tickled. As soon as they
told her she was done, she sat up and said, "Ly-un now pease!" Oh yeah...don't ever promise
anything to a smart 2 year old. The techs laughed and happily obliged. They laughed harder
when Avalon stood up and tried to carry her new friend...he's taller than she is! All told, their
kindness made up for ER's ridiculous slowness...and a happy little two year old headed off for
J-5 and a bed.
I think we finally got to sleep around 3:30 a.m. - nearly a 24 hour stint for me. Trust me when I
say I'm too old for that now... By 6:00 a.m. blood draw and meds, Avalon's fever was back up
to 99.8, so we dosed her with the Tylenol with Codeine again. The rest of the day was a string
of IV antibiotics, naps and nibbling at food. Basically, she slept for the better part of the day -
she had a lot of catching up to do. Her fever never came back after the morning Tylenol wore
off, so we had high hopes of getting out in a day or two. The Heme-Onc attending and fellow
didn't make it in to see us until 3:30 p.m. - they were swamped yesterday. I'm darned glad
they were so late in coming...
Dr. Olshefski (attending) is as nice as his reputation says he is. He truly listened to Avalon's
history, and agreed with me that she most likely just had a typical cold, nothing insidious. The
fever was the result of a compromised immune system being hit with a cold and major surgery,
within a few hours of each other. He said, if I felt comfortable with it, he would bend the rules
and allow us to go home that day. When I told him we were supposed to be at the Circle of
Friends fundraising event - he said he'd work to try to get us there on time. He allowed us to
go and take pictures...as long as we promised to get her home for lots of fluids and quiet rest
the remainder of the week. Done!
The next two hours, several people worked like crazy to get us out and to the event on time.
Dr. Olshefski (I'm not sure I'm spelling that correctly) ordered a high-test long-lasting IV
antibiotic for Avalon, to help her over the hump. The nurses pestered the pants off of the
pharmacy to speed them up and get it there. Our nurse, Natalie, did everything she could to
speed up the discharge process. When the floor computers crashed - she even had to
hand-write parts of our discharge papers. Another nurse we love, Chrissy, helped Natalie with
a post-op patient she had - so that Natalie could get us out the door.
After Nick picked up Aurora from dance camp, they headed home to change clothes, and pick
up an outfit for me. As he was winging his way to the hospital, we realized we had no earthly
idea where we were going! I called the Children's Hospital Foundation, and some wonderful
women there Map Quested a map for me and faxed it up to the floor. In the meantime,
Chrissy, the wonder nurse - also Map Quested a map for us, so we were well prepared. These
amazing people literally busted their collective derrieres to make sure Avalon was able to make
it to the event to smile as promised. I owe them all gigantic hugs and considerable kisses.
Avalon did her best to smooch their cheeks off before we left. I hope they know how much we
We made it to the event after all. Avalon posed for the necessary pictures, and got to meet
several of the board members and founders of Circle of Friends. Most importantly, I got to
thank them for all they are doing for her, and for the other children. I'm really looking forward
to getting to speak at Friday night's event. I can't wait to publicly tell everyone how much their
work means to us...
So there you have it, the craziness that has been our existence the past few days. If you don't
think that's enough to send us to the looney bin, I have one more tid bit to offer. As Nick was
taking Aurora to dance camp yesterday morning, they were rear-ended. It took the police over
two hours to show up, so he and girls had to sit and bake in the heat for all that time. Worse,
while they were waiting - Nick was assaulted by a family member of they guy who hit him. The
cop who finally came was awful. He didn't believe that Nick was assaulted, and refused to
interview two witnesses sitting on the porch of a house the accident happened in front of.
Better yet, he told Nick to go sit in his cruiser - and shrieked when Nick refused to leave the
girls alone in the car. His revenge against Nick for not leaving the girls? He never interviewed
Nick about the accident. He just left after talking to the guy who hit Nick. Nice...
No wonder police get such a bad rap.
Now our insurance will have to take it up with the cops and the other guy. Point is, when it
rains it pours. The last few days have been monsoon season around here....
Hope all of you are staying "dry"! Love to ALL of you! And thank you for your emotional
support - we appreciate it!!!!!!
Alicia, Nick, Aurora, Ambrosia, and Avalon
Avalon's Army of Angels
|June 13, 2005
Avalon heading into hospital