"An invisible red thread connects those who are destined to meet, regardless of time, place or circumstances. The thread may stretch or tangle but will never break." (ancientChinese proverb)
Audra was in the hospital on the actual day, April 8th,
but I still had to get our traditional number cake picture,
even if it wasn't the actual day.
We are...
Riley was recognized a second time for displaying the traits and characteristics of his school's mission, values and beliefs. Basically for being a "good kid" that we know he is. He is kind, friendly, empathetic, non-judgmental and polite.
And on the day that he received his second shirt he just happened to be wearing the first one he received :)
Riley's swimming season finished up.
They had professional photographs done at the pool,
and a friendly team meet followed by an awards ceremony and party.
This is Maura's first year participating in her dance studio's performance group.
In the spring (before the big recital) her studio has a Dance Showcase with just the dancers in the performance group.
There is another teenager in the house...
Today is Aidan's 13th birthday...
and even with his busy busy schedule we managed to squeeze in some time for ice cream cake,
Well, this novel of Audra's current Medical Mystery is done.
Not that I think there won't be a sequel !!
After 19 days in the hospital is was time to go home.
Both of the major medical concerns that she developed after she was admitted seem to have settled out...vomiting and hypertension.
We have her on lower volume tube feeds than she was on before and the clonidine patch is keeping her blood pressure stable.
She came home on a bunch of new meds,
and even I--the seasoned nurse--felt a teeny bit overwhelmed tonight while trying to get everything organized and on a schedule.
We will figure it out though, and get into a new routine.
The most frustrating part is that even though we spent 19 days in the hospital we didn't get the opportunity to address the issue that brought her to the ER in the first place...
her behavior.
Because she spent most of the 19 days in the hospital feeling crummy from nausea, vomiting and hypertension she wasn't having any of the behavior problems. We are thinking that maybe her increased challenging behaviors were a result of one of these medical issues that we didn't even know was brewing. So now we are hoping that those behaviors just never return. And if they do...I guess we start back a square one for that.
A few good things did come out of this long hospital stay...
We received her Genetic diagnosis of ZTTK syndrome
We were able to see and consult with nearly all of her specialists
She was approved for increased home nursing care hours,
now 8 hours Monday-Friday.
The nursing agency we currently use is working on finding new nurses for these shifts and I have also been in contact with a few other nursing agencies to see if they can help cover some of the shifts. I am hopeful that we will have more consistent nursing care at home for Audra very soon!
So now it's time to get back into the routine of home life, work and school.
Plus lots and lots of follow up appointments for Audra!
Packed and ready to leave the hospital...
Audra, Mommy and Mickey...homeward bound!
Asleep after just a few minutes in the car...
HOME !!!
We got home just before the other kids started getting home from school.
Well, here we are finishing up Audra's 3rd weekend in the hospital.
During the first weekend we thought she would only be here through the weekend.
During the second weekend we took bets on which day of the following week she would be going home.
And now, during this third weekend we are trying not to think too far ahead.
Friday
Audra pretty much slept all day Friday...and I mean ALL day. The few times she did open her eyes she could hardly keep them open for even a minute. Any attempt to prop her up and get her involved in an activity quickly ended with some shut eye.
The clonidine patch was placed on her back last night and today she is still getting her oral dose twice a day. The doctors have noted that Audra seems to be exquisitely sensitive to even the smallest of changes in her clonidine dosing so they have opted for an over-sedated Audra for a day or two instead of having another set back with severely high blood pressures.
Audra has done well with continuous pedialyte running through her g-tube since yesterday afternoon so today's big plan was to put her back on full strength formula. We won't be slowly increasing her from 1/4 strength to 1/2 strength to full strength like we did last week.
Audra received a very "magical" delivery today...Mickey and Minnie !! And even before opening the card I knew exactly who it was from....Uncle Tim and Aunt Dawn
Mickey is literally taller and wider than lil peanut Audra!
And they brought the only smile of the day to her face :)
Which was quickly followed by some more shut eye for little sleeping beauty.
Saturday
Audra was still very sleepy today but was able to stay awake for an hour or two here and there throughout the day. Today's plan was to start weaning down her oral dose of clonidine since it is anticipated that the clonidine patch is beginning to kick in by now.
Grandma and Grandpa came down to visit again for a few hours. Audra had some serious giggles with Grandpa and the Mickey Mouse balloon.
Later Daddy and Maura came. Oh how sweet it was to see and hold my other girl! We could have hugged forever in that elevator lobby.
Maura, the proud big-little sister, pushed Audra around the unit in this little car for quite a while. All the nurses here fussed over her and said what a great sister she is.
Audra got a bag full of cards and well wishes from her friends at school.
All those precious little hand written names lit up Audra's face and melted my heart. So sweet!!
Audra started to perk up after a while and had some fun with her sissy.
Today is our 4th Familyversary.
Such a special day for us as a family.
I can't believe that it's been four years since we first held Audra in our arms,
and it's hard to even remember our lives without her.
April 8, 2017
and April 8, 2013
In honor of Audra's special day I thought I would share {again}
the video I made for her 1st Familyversary
After much encouragement from nearly everyone including Maura, my friends, my parents and even my boss...
I decided to go home for the night Saturday.
This was an extremely difficult decision for me, especially given that today is THE day Audra walked into our lives, arms and hearts four years ago. I struggled with a sense of abandoning her, although I knew I was being a little dramatic. I have never left her alone for the night while she has been in the hospital. But I needed a quick break to recharge, my other kiddos at home needed a little mommy time, and I really needed a bit of fresh, non-hospital air. I haven't even set foot outside in 15 days! And if there ever was a good time to did, now was the time...while she is extra sleepy and has a 1:1 tech assigned to sit at the bedside with her.
At home the sight of Audra's empty bed and feeding pole/pump made my heart so sad.
Sunday
I made it back to the hospital about 2pm after my quick 18 hour getaway. Turns out Audra had been awake between 2am-6am and then fell asleep for most of the morning/early afternoon...so I didn't miss much. And my kiddos at home were so very happy to have some time with mommy. It was hard on Maura when I needed to leave to go back to the hospital today. She cried and worried about how long it would be until I came home again. It is such a terrible, torn feeling for a mama's heart when you have to chose which of your babies to be with.
Today Audra was more awake than the last two days. She still took about 4 naps, but she spent longer stretches awake in between those naps.
Audra is now officially off the oral clonidine and is just receiving it continuously via the patch on her back. So far her blood pressures have stayed steady. Now we just need to make sure that patch stays put, because if it comes off without us knowing and she is still so sensitive then we could see her blood pressure rebound again.
Audra was most excited about being able to eat real food again today. She feasted on chicken strips, french fries, and a rice krispie treat for her first meal. This afternoon she had another abdominal x-ray done to make sure she isn't getting constipated. She has been receiving and will go home on a cocktail of meds to keep things moving in that department. With her history of pancreatic insufficiency Audra usually has the opposite problem which is why she takes enzymes before she eats. But whatever it was that caused her little tummy to slow down so much over the past two weeks led to things not wanting to stay in up top or come out down bottom.
Here is Audra's collection of new fluffy friends that she acquired since being in the hospital,
{plus pink-flamingo-bunny...who's been with her since her very first day at CHOP in 2013}
And I've joked that she has so many balloons that we could probably use them to float our way home {Up style!}
