Fun at H-O-M-E!

We are HOME!!! 

 

And our days have been jam packed with so much fun that I haven't even had time to blog about it! 

 

Audra is definitely much weaker than she used to be.  (But what she lacks in strength she makes up for in happiness!)  She isn't walking much, she prefers to be carried, and her muscle tone seems pretty low (not usual for her).  But all that is to be expected.  Somewhere I remember hearing that for every 1 day you spend in the hospital it takes you 3 days to regain your strength.  So with 23 days in the hospital under her belt, Audra is looking at 69 days to recover!  But I think our tough little cookie will catch up quicker than that!  She is starting to "talk" more (mostly phrases in Cantonese), which usually indicates that she is feeling good.  She stopped using the signs she knew while she was in the hospital so we have some catching up to do with that. 

 

She saw her pediatrician this week and her weight is still down 2 pounds from where it was before she was hospitalized.  And her hemoglobin hasn't come up any yet...it was 6.9 on Wednesday.  She will go back for a weight and hemoglobin check next week.  In the mean time we are constantly offering her food, chasing her around with Pediasure and hitting fast food drive-thru's for calorie packed cheeseburgers and milkshakes!  (The goal is for this mama NOT to pack on the pounds with her!)

Now on to the important stuff...PICTURES!!!

 

 



 Sisters

The cousins reunited:
Fun in the sprinkler with Charlotte...

So happy to finally spend some time with each other!

 

 

 

 Audra preferred to watch the fun from a distance...

safe behind the deck rails!

 

 

Everyone enjoyed their ice cream cone!

 

 

 

Dress up Fun:

 

Three Pretty Princesses!

Maura, Audra and Charlotte

 

Fun in the bouncer:

Aidan, Audra and Maura

 

Rumor has it...

The rumor is....Audra's going home today!!!  Right now the doctors are trying to tie up some loose ends regarding:

1. her anemia (her hemoglobin was 7.0 this morning)

2. the final pathology report of her GI biopsies from last week (the pathology department has a conference today where they will all review her biopsy slides and come up with a conclusion)

But the greater chore for her doctor right now is arranging for all of Audra's out-patient follow up:

She already has an appointment to see Endocrinology this coming Friday.

She will need to see Infectious Disease and have another kidney ultrasound before they will stop her antibiotics.

Gastroenterology needs to decide what they want to do regarding her biopsy findings.

Immunology will need to see her once she is well, to further investigative her immune system function as well as to determine a plan for re-vaccinating her.

and...Someone needs to follow her hemoglobin closely.

I hadn't noticed how long I had the blinds shut in the hospital room.  Audra's room faces the front of the hospital and the sun can be quite bright.  This weekend I opened the blinds and she looked with wonder and amazement at the world outside!!  All the people...and cars...and buildings...the sky and clouds and sun!  Her reaction:

Here is one of my favorite moments from this past weekend when she fell in love with the sock monkey Grandma and Grandpa brought her:

And MORE fun with balloons:

 



As you can tell...she is definitely feeling better.  There is no way to predict what will happen once the abscesses are resolved and the antibiotics are finished.  We will cross that bridge when we get to it.

 

In the mean time we are looking forward to relaxing at home, trips to the park, and playtime with siblings and cousins! 

 

Next post...from HOME!!!

good news vs. just news

Audra's urine culture from Friday night DID end up growing a bacteria:  E. Coli.  

For the doctors on this weekend this was good news.  They were just coming on service, meeting Audra first time and inheriting her difficult, challenging and mysterious case.  And, oh man, were they thrilled to be the ones to give us "a diagnosis".  Score for them!  Or so they thought.  

Today the doctors who have known Audra from day one were back on.  And they are not convinced.   This is how I have felt all weekend...but I didn't want to be the party pooper.  Now I have company.  

Basically, the thought is that these renal abscesses are not what started this illness 4 weeks ago...but rather something she developed while we have been here trying to figure out what this illness is.  We know for sure that she had negative urine cultures during weeks 1 and 2 of her fevers.  We also know that these abscesses were not present on her 3 abdominal ultrasounds and the MRI during weeks 2 and 3 of her fevers.  Regardless, they are there now and need to be treated.  The concern is that once her antibiotic course has finished...and we have evidence by ultrasound or CT scan that the abscesses are gone...the mysterious illness will still be present.  However, we won't know this for sure for at least another 2 weeks.  So in the mean time she will get antibiotics and hopefully start to feel better.  And that is good news!  She is way overdue for feeling better :)

Today she had another ultrasound to see if the abscesses could be visualized.  They also wanted to see if she has a blood clot near her kidney that could explain how she got these abscesses despite not having evidence of a prior UTI. 

And the results are:  no blood clot (good news!) and YES the abscesses could be visualized.  

This is good because now the doctors will be able to follow her abscesses and know when they are resolved by periodically doing ultrasounds (which is sooo much easier than doing CT scans!)

This is not so good because it confirms that NO...these abscesses were not present when she had ultrasounds during weeks 2 and 3 of her fevers.  So, they are not the primary cause of her still mysterious illness that started one month ago today.

This mama's gut was right.  

But more importantly...Audra hasn't had a fever for 30 hours and definitely feels a bit better.  Thank you antibiotics!!  

Some Answers:

Finally...
we have some answers! 

 And all it took was:

3 pediatrician visits
3 emergency room visits
2 hospital admissions
20 days in the hospital
2 EKG's
2 ECHO's
4 x-rays
1 sweat test
3 abdominal ultrasounds
1 full body MRI
1 CT scan
1 bone marrow biopsy
1 endoscopy/colonoscopy
1 spinal tap
9 IV's
Countless blood draws
Cultures of everything possible
Consults by Infectious Disease, Rheumatology, Immunology, Oncology and Gastroenterology

and...29 days of high fevers!!!

Yesterday at 5:30pm Audra went under anesthesia for a CT scan of her abdomen/pelvis and a spinal tap.  Once again, she tolerated the anesthesia and procedures very well.  Strongest girl I know!  Poor, sweet girl had a nasty spinal headache last night though because they had to take a large volume of spinal fluid for all the tests they needed to run. 

Late last night the doctor eagerly came in to tell us that they found something on her CT scan....and boy, was it the talk of the hospital!  Really, no one could believe it.  Audra's left kidney is larger than her right one and had multiple areas of what they think are abscesses inside it, with evidence of inflammation around it. 

So...pyelonephritis (a kidney infection) with abscesses...most likely the result of a UTI.

The strange thing is...all of Audra's many urine samples in the past 3 weeks have shown no signs of infection.  So, very late last night, they got another catheterized sample of urine from Audra and sent it off to the lab.  Now we wait.  The doctors are very hopeful that it WILL grow a bacteria this time and then they will know exactly which antibiotics to give her...and she will get better VERY soon!

This diagnosis seems almost too good to be true.  How did it possibly take this long to figure this out?  Why haven't there been any other signs of this infection before yesterday...28 days into the illness!  For now, the doctors don't have answers to these questions.  What they DO know is that there are abscesses in her kidney right now that NEED to be treated.  So, today at 1:30pm she received her first dose of antibiotics.  If this really is the cause of her prolonged illness then in a couple of days the fevers should be gone, her bloodwork should start returning to normal...and she should feel BETTER! 

If she doesn't improve with antibiotics, then this is not the primary cause of her current illness, but just something else that has been identified along the way.  The only way to know for sure is to treat her with antibiotics and see if she gets better. 

Because of all the extensive testing that Audra has had, we have found out about some other health concerns:

Her bone marrow biopsy indicated that she isn't producing red blood cells properly.  Maybe this is because of the severe inflammation throughout her body right now.  Maybe not.  We will follow this and see if it improves as she gets better.

Her immune system seems to be a bit "quirky" and not functioning 100% properly.  Again, they will follow this and see if it improves.

The biopsies from her endoscopy showed that she has quite severe inflammation in her stomach and the first portion of her small intestine.  So significant that there is actually some atrophy (damage and destruction) of the tissues.  The pathologist is not sure what is causing this...but whatever it is, it has been going on for a long time.  This is not the cause of her current illness, however her current inflammatory response may be causing this condition to be exacerbated right now.  For sure, the condition of her GI tract is why she is so small.  There is no way that her body could absorb nutrition in that current state.  Also, she has H. pylori infection in her GI tract.  Not all that uncommon and very treatable.  So, for both of these conditions she is being given a strong acid blocker to protect her stomach lining and two antibiotics to treat the H. pylori.  There is talk of initiating a special diet to help her stomach/intestine heal.  More to come on this later probably.

So, for now, we wait and pray for bacteria to show up in her most recent urine culture...and for the antibiotics to work and for her to feel better.  Looking back, I cannot believe all that she has been through in the last 4 weeks.   So many uncomfortable, painful things...on top of nasty fevers that never give her a break.  But in between all of that she is still happy and playful.  She is one, strong, amazing, beautiful little girl who I love with all my heart...to the moon and back!

She has captivated all of the doctors here in the unit.  I can tell they truly care about her and WANT her to get better.  In fact, I think they all have been racing to beat each other out to "the diagnosis".  Earlier this week I warned them that there was a new doctor on Audra's case who was just as eager to figure out the diagnosis...

Thank you for your thoughts and prayers for our sweet, sweet girl...they HAVE been heard...and they HAVE been answered!!  We have had to face some very scary potential diagnoses for Audra, and thankfully they were all ruled out...one at a time.  Please continue to pray that this new finding in her kidney IS the primary source of her illness.  If so, we should be home by the middle of next week!

28 days

Today is day #28 of Audra having daily fevers.

Four weeks of fevers up to 105...every day...multiple times per day!

28 days ago I could have never imagined that her fevers would last this long.  The fevers are persistent, relentless, terrible and ugly.  Honestly, before now I didn't even know this was possible, that our body was capable of something like this.  It seems completely irrational...even crazy...to think that someone could endure this for so long.

Her fevers continue to worsen.  They are becoming more frequent again and hitting 105 three times a day...and her discomfort during them is increasing (shaking and crying).  She had bloodwork done last night and the results are not good...everything is going in the wrong direction.  For the medical people...her Hgb is 6.7, CRP is 21 and sed rate is 110.  I am anxious for the whole team of doctors to come in today and decide upon a plan.  They NEED to give her steroids soon...even if they don't know exactly what they are treating.  I am concerned that she will need a blood transfusion as well.

As we wait for a diagnosis there is one thing the doctors are sure of...this mysterious diagnosis will definitely have the word "atypical" in it.  No matter what it ends up being, this illness is in no way typical...which is why it has been so hard for them to pinpoint the diagnosis.  It's gonna be one for the books for sure!

Preliminary results

FINALLY...yesterday at 4:00pm Audra went into the OR for her bone marrow biopsy and endoscopy/colonoscopy.

They were unable to do the procedures on Monday because she did not respond to Sunday's GI clean out as they expected.  So the whole clean out had to be repeated on Monday.  And even then she still wasn't totally "cleaned out" but the GI doctor was ok with proceeding with the scopes.

So yesterday we thought everyone was on board with her going to the OR....until anesthesia put up a fuss about her having high fevers all day.  UGH!!!  That is exactly why she NEEDS to go the OR and have these procedures done.  Yesterday was day #25 of high fevers....not quite sure how anesthesia thought they would get her into the OR without a fever!  So with ALOT of encouragement from all her wonderful doctors and nurses...anesthesia took her to the OR at 4:00...with a fever of 104.

Preliminary GI results:  her upper scope looked normal.  Many biopsy sites were sent.  Her lower scope showed "friable" tissue that bled more than usual at all the biopsy sites.  GI couldn't comment on the significance of this finding.  They want to wait and see what the biopsy results show.  They should have those results tomorrow.

Preliminary bone marrow results:  under the microscope her cells looked completely normal.  With no concern for leukemia!!!  They told us that almost all of the time the preliminary result for leukemia matches the final result.  But we also know that up until this point Audra has done nothing "by the books".  So we are praying that this time she will follow the general rule, and her final result will not show leukemia.  They also sent her bone marrow off to be studied for infectious sources and blood cell production issues.  Final results are expected on Friday.

Audra had a hard day yesterday, first because of all the high fevers she was having and also because of the anesthesia and a sore hip at the bone marrow biopsy site.  But when her dinner tray came into her room at 8:30pm that girl perked up fast.  She hasn't had solid food in 72 hours!!  And we all know how this girls loves her food...any food!!

Oh, and by the way, there is a new doctor hot on the trail of Audra's case.  So the other doctors better watch out...cause this doctor is determined to get to the bottom of this!!

We are grateful beyond words for the care, concern, love, thoughts and prayers that have been showered upon Audra, and our entire family, these past few weeks...and especially these past few days.  Your texts, emails, blog comments, phone calls, and visits have lifted our hearts and spirits. We feel the comfort of your prayers continually surrounding us.  We have been blessed by the generosity of so many people:

Family, friends and neighbors have given our kids at home rides to activities, offered play dates, and cooked meals.

My amazing co-workers in the PICU have stopped by to see Audra and I every.single.day, bringing with them yummy breakfasts, toys/activities for Audra, and magazines for me. They sit with Audra so I can take a shower, do some laundry or run down stairs to the cafeteria.  I most certainly would have lost my mind these past 2 weeks without them!  They have loved on her as if she was one of their own.  I am definitely the luckiest mom of any patient in CHOP!

Today was a day of waiting.  There is nothing to do until we have all the biopsy results.  Audra's fevers have been more relentless the last 48 hours.  They are coming every 6-8 hours and hitting the 104's (the end of last week they had to stop giving her the Indomethacin, the medication that suppressed her fevers, because she developed some bleeding issues).  Right now her fever is rising again.  She last had tylenol 3 hours ago and it only brought her fever down to 101.  They cannot give her Motrin because of the bleeding concerns...and she can't have tylenol for another 3 hours.  Please pray that the doctors figure out the diagnosis soon so they can begin treating her...so that she doesn't have to endure these fevers any longer.

6 weeks

We have had Audra with us for six weeks.  Six weeks ago today a tiny and sweet yet scared little girl was placed in our arms.  We are thankful for every.single.day we have had with her.

The first two weeks we "lived" with her in a hotel in China

The second two weeks we spent with her at home (although 9 of those 14 days she was quite ill)

The last two weeks she has been in the hospital.

After today, Audra will have spent more time here in the hospital than she has spent with us anywhere else. 

I am looking forward to the next 6 weeks with her...hopefully spent primarily at HOME playing, exploring, bonding and finally getting settled into a routine...and maybe even unpack our luggage from China!!

When we finally get to bring her home from the hospital (hopefully this week!) I am sure it will be overwhelming for her...like coming home for the first time.  I am not even sure how much she will remember...her room, her toys, her clothes.  It will be like starting all over again.  She and I have been together 24/7 for the past two weeks.  I am sure it will take her some time to get comfortable with her baba and brothers and sister again.  (Although, last night when Sean and Aidan were leaving after visiting her here at the hospital she cried, so that is a good sign!)

Thank for your thoughts and prayers for Audra while she had been sick, hospitalized and a mystery patient for her doctors.  Today is a BIG day for her as she will be going to the OR for a bone marrow biopsy and an endoscopy/colonoscopy.  We are hopeful that these tests will lead the doctors to a diagnosis for her...whatever it is.  She tolerated her GI prep fairly well yesterday.  Although, again, her little body didn't want to cooperate and respond to the medications in the typical way.  So the doctors had to adjust their plan a bit.  (Do I see a theme here?!)  She kept the feeding tube in her nose (except for the one time she threw up and it came out) and she didn't mess with it or pull at it!

She is one strong little girl.

tiny but MIGHTY!

Yesterday was supposed to be Audra's bone marrow biopsy.  But she had other plans...her tiny little body wouldn't cooperate and give in to the huge doses of sedatives they gave her. Despite giving the maximal safe doses of 3 different medications she still had her eyes open and was moving around...basically laughing at the doctor's attempt to get her to sleep!  Really, no one in the room could believe it. Everyone kept shaking their heads in disbelief.  Our girl must have some amazing metabolism!  She is so much stronger than her mere 21 pounds make her look like! 

So the new plan is to do the bone marrow biopsy Monday.  She was already scheduled to go to the OR Monday for an endoscopy and colonoscopy so they will just do the biopsy then while she is under anesthesia.

That means today she had a day "off"...no tests, no blood draws and very few doctor visits.  We passed the time doing some of this:

Playing dress up

Reading gossip magazines

Taking car rides around the unit

Eating candy for breakfast, lunch AND dinner

Enjoying visits from family

The hospital had some special visitors today who went room to room...and it's a good thing Audra was sleeping at the time because we all know how terrified she was of the Disney characters.  They gave out action figure toys to all the patients, and I managed to get a picture of them at the door to Audra's room:

 

Audra had a good day today.  Her fevers were in the 102 range and she didn't feel too bad during them.  We heard lots of belly laughs from her and she was pretty playful.  It was easy to look at her today and forget all about the fevers and the crazy inflammatory process going on inside her little body.  I am looking forward to seeing her like this more often. 

Soon hopefully...I am holding onto hope that we will have an answer in the next few days.

Change of plans

Audra did not have the bone marrow biopsy yesterday.  They were unable to get her on the schedule until today at 2:00. As it turns out, this was a blessing in disguise!

Yesterday was the CHOP Prom. And because Audra was not recovering from sedation for the biopsy she was able to go!

In the afternoon the Child Life therapist took her to get ready. There was a room with racks and racks of dresses and suits in every size. I found two pretty dresses in her size and let her choose which one she wanted.

Then she was off to the hair and make-up station.  They braided the front of her hair down along the right side. Then they curled it with the curling iron and pinned it up in an up-do. The finishing touch was sprinkling her hair with glitter!

There was an accessories table where she could choose from necklaces, bracelets and earrings.  I am sure she had never experience anything like this before...never been so pampered and fussed over.  

 

She looked sooo beautiful!!!

(her face is not puffy anymore and the blush and lipstick hid her paleness)

The prom started at 5:30 with the red carpet ceremony. All the kids entered through a balloon archway and walked along the red carpet lined with "paparazzi" (hospital staff and volunteers) who ohhed and ahhed and fused over each and every child.  The cafeteria seating area was transformed into "A Night Under the Stars".  It really did look just like a high school prom!  The DJ's announced the arrival of each VIP (patient). There was food galore and even a picture taking station. The music played and the dance floor was full of beautiful children and IV poles.  Endless hats, boas and light-up wands & glasses were passed out to all attendees.  The floored was covered in feathers from the boas of dancing children.

There were children towing IV poles, oxygen and chest tubes, in wheelchairs, attached to ventilators, with feeding tubes taped to their faces, port needles peeking out from beneath their dresses. And every single child had a smile on their face! If even for only a couple hours, this prom gave them the opportunity to escape their reality and forget about all the medicine, treatments, therapies, procedures and surgeries that await them.

This was the 7th annual prom at CHOP and even though I have seen it many times before, I have never seen it from this side...as a parent, there with my child, benefiting from the overwhelming generosity of the Joshua Kahn Foundation.