Chin Strap

After they finally got the CPAP strapped to Averi's face Monday night, the alarms kept going off saying that there was a leak in the pressure.  All it meant was that her mouth was hanging open and letting the forced air out instead of making it go down into her lungs.  This was quickly fixed by putting a chin strap on to keep her mouth closed.  Luckily it wasn't so tight that she couldn't get her beloved thumb in.  She looked so silly I couldn't help but giggle.

Nothing really happened yesterday, other than waiting for culture results, beating on Averi's chest, and giving antibiotics and diuretics.  OT and PT both stopped by but couldn't stay because Averi was once again sedated to the point of just sleeping all the time.

At one point the nurse mentioned to another nurse that the doctor wanted someone to hold Averi in hopes that a change in position would help dislodge the junk in her lungs.  I had been letting her sleep in her bed since they were doing so much stuff to her and was not too happy that the nurse hadn't bothered to tell me.  Um...hello, I'm the mom; I will gladly hold my daughter that I haven't been able to hold for the last week.  Give her to me NOW!
(This, of course, ended with her pooping on me twice and soaking the front of my pants.  What can I say?)

By the end of the day, the sedative had worn off a little and I was able to get her to shake her rattle a few times.  She had gotten more stable, with no fever and a normal blood pressure, so the scare of another infection died down a little.

This morning things were looking a lot better.  Averi was much more awake and kept holding onto the top of her CPAP like she was worried it might come off or something.  They turned down the pressure on her CPAP and when she handled it just fine they took it off completely later in the afternoon.

Her oxygen levels stayed high until she fell asleep (in my arms because I am now holding her all the time and making the nurses work around me, thank you very much) and they had to put the nasal cannula back on her.  This only lasted until she woke up and ripped it off multiple times and then kept her levels up all on her own.  I guess she finally got tired of having all that crap on her face. :)

The only problem with having the CPAP off was that her sedation meds were turned off as well and she went right back into jittery withdraws.  Hopefully it will subside in a few days.

OT was finally able to come this afternoon and do a few things with Averi.  She's not stable enough to sit up yet but she did draw a few scribbles while lying down and shake the heck out of a squishy ball.  I'd call that progress after not being able to move for over a week.

I Hate Fluid!

Last night didn't go quite as planned.  Averi was up well into the night crying and no amount of cuddling or Tylenol would console her.  She was maxed out on her medications but the withdraws were really bugging her.  She finally fell asleep, but only in spurts, and didn't get into a deep sleep until this morning.

When the doctor came by to tell me that her white counts had gone up more than 50% since yesterday my cancer fighting brain was ecstatic.  This quickly died when she explained that she was worried that Averi was trying to fight off another infection and wanted to keep her here for another day to keep an eye on her.  Nice!

Averi was fine until the afternoon when her oxygen levels went down into the 60's and they had to give her blow-by to bring them back up.  As the day progressed, her heart rate started climbing and her lungs sounded worse.  A chest x-ray showed a significant increase in fluid on her right lung and she was put on CPAP to help keep her oxygen levels up and hopefully force open that right side.  Cultures were taken again and she was started on another round of antibiotics as well as the diuretics.

She kept fighting them over putting the CPAP on and they had to give her quite a bit of sedation just to get it on.  The picture was during one of the breaks while they were waiting for the meds to kick in.  She was finally happy for just a few minutes.  They pound on her chest every 2 hours now in hopes of getting some of the crud out of her lungs.  

This means she will be here at least 2 more days until the results come back from the cultures.  If someone could explain to me exactly how a person gets an infection while in isolation in the PICU, I am all ears.

Looking Good

I went to start this post and realized that it has been almost a week since the last time I wrote.  I didn't mean to leave you hanging, but honestly, days just blur together when you are in a room with no windows and lots of beeping machines.  I'm so sorry.

Averi has slowly been making improvements.  She was much sicker this time so her recovery is taking longer but it is still happening.  On Wednesday the diuretics kicked in and she lost 2 pounds of fluids in one day.  Her face looked tons better (and more like Averi) but her hands and feet were still pretty puffy.  The rest of the fluid will take a while to get rid of.

Since her fluid was going down and they could turn down the pressure on her vent, they also took her off the paralytic.  She was still sedated so she wasn't awake very much, but when she was she could actually open her eyes and look around.  Being off the paralytic also meant that she was back in restraints to keep her from tugging on the tube.  I guess you win some and lose some.

The end of the week consisted of slowly weaning the vent until she was able to breath over it.  On Friday night she decided that she was done with the whole ordeal and tried to extubate herself.  We saw the tube come up and lay sideways in her mouth before miraculously sliding back down her throat.  After an x-ray was done to make sure it was in the right place, the tube was re-taped.  They even started giving her feeds through her G-tube and were able to turn off the IV nutrition.

Saturday came and Averi was doing so well that they decided to extubate her.  I assumed she would have to go right onto CPAP again but she did surprisingly well and only had a nasal cannula put on.  Being extubated came with its ups and downs.  The up - we finally got to hold her for the first time in a week!  Dan was there when it happened so he got to hold her first (I'm not bitter).

The down side is that she was on the sedation medications long enough that she went into withdraws without them.  They put her on another less potent version but she was really jittery and fussy.  That's my little girl - the druggie!

So by the end of the day Saturday she was a little more awake and mobile, although still very tired, and the only cords she had attached to her were her G-tube, oxygen, and heart rate and oxygen monitors.  It was a good day.

Today was a pretty mellow day.  Other than going through withdraws and wanting to be held, which we can do now (I know I already mentioned that but I'm pretty pumped about it), they just continued to wean her meds and oxygen.  We were even given the hope that she might be discharged from the PICU and go back upstairs tomorrow.  Averi has been here over a week now and we are so ready to see sunshine again and get on with this chemo.

PICC

I have never seen a person as swollen as Averi.  They weighed her yesterday and she's gone from 18 to 25 pounds since she's been admitted.  That's almost a 40% weight gain, and it is all fluid.

Yesterday was a little crazy.  The final results came back on the broviac cultures (proving that she was indeed growing the same bacteria as before and it had set up shop in her tubes) and Averi went down to Interventional Radiology at 1:00pm to have her PICC line put in.

The 30 minute procedure took over an hour because she is SO swollen.  She's little to begin with, she has smaller veins, and she's being given medications to improve her blood pressure which in turn shrink her vessels.  The pressure was really on because she is getting so many medications that she has to have a central line with a double port (also very hard to do on babies).  Luckily, we had a little miracle and they were able to not only put the line in, but put in a double port!

The PICC had to be put in her leg, instead of her arm, to save the upper veins for the next broviac (which will have to be put in on the right side instead of the left).  Apparently every time you put in an IV or central line, it causes scarring and can make that vein unusable again.  I'm pretty sure Averi will just be one big scar by the time she's done with all this.

We were supposed to go down to the OR shortly after having the PICC put in and switching all the meds over to the new line, but that wasn't the case.  We waited for the rest of the afternoon, while putting off meds that would help with her swelling so that they wouldn't interfere with the anesthesia, and never made it to the OR.

Around midnight, her oxygen saturation went way down and they had to bag her until she slowly brought it back up.  She had so much fluid in and around her lungs that they weren't staying open and the pressure of the vent had to be largely increased.  I guess this finally proved to the doctors how much she needed the lasix (the drug that makes you pee off the fluid) and they gave her a dose.

(I can't close her hand any more than this because her fingers are so swollen.)

Not even an hour after she had finally calmed down, I was woken up to find the surgeon and 2 OR nurses in our room.  Apparently they just showed up and decided to remove the broviac bedside...at 1:30 in the morning.  They set out their sterile field and got to work removing the stitches and pulling out the line.  They didn't even close it up, explaining that they didn't want to seal in the infection and that the body would close it on it's own.  Had we known that they were going to do it bedside, we could have been giving her lasix all day long...I love good communication!

Gratefully, once the broviac was out they started Averi on a continuous lasix drip and she started peeing.  Unfortunately, the lasix isn't compatible with some of the other medications she is getting and has to be administered through the IV on her foot.  Since that IV and both ports on her PICC are being used, another IV had to be put in.  I woke up this morning to find an IV in her head.  I guess that was the only vein they could find that wasn't covered by 5 inches of fluid.

The rest of the day went pretty smoothly and Averi continued to pee and then pee some more.  Tonight you can actually open her eyelids a little bit and her tongue isn't so swollen that you can see every single taste bud poking out of it.  I know we still have a ways to go, but at least she is working on improving.

Life Support

Averi received a couple of platelet transfusions and more fluids which helped her vitals return to normal and her acidity level is up to 7.32, a drastic improvement from yesterday.  They also started her on lasix to hopefully help drain most of the excess fluid from all over her body.  I had to hold her up this afternoon while they changed her bedding and she was definitely heavier with all the excess fluid.  She is so pumped full of fluid, in fact, that her tongue won't even stay in her mouth and you couldn't pry open her eyes if you wanted to.

(She's so swollen that Tiffany said she thought she walked into the wrong room the first time she saw her.)

The preliminary results came back from the lab and they found three different bacteria growing from the cultures they took from her broviac.  They found “pseudo-like” gram negative rods (which my bet will be Pseudomonas aeruginosa), a non-lactose fermenting gram negative bacteria, and probable Enterococcus gram positive bacteria.  That would explain why she is sicker this time and why she is taking longer to recover than the last two visits to the PICU.

The bacteria only grew from the cultures taken from her broviac; her arterial line was clear.  That confirms what the physicians suspected and Averi will have her broviac taken out tomorrow.  They will put in a temporary PICC line until the infection clears up.  Then they will most likely insert another broviac so we can continue her chemotherapy.

Averi is a fighter.  That is a known fact.  In fact, she is such a fighter the physicians were concerned she was expending too much energy combating the breathing tube instead of letting it help her.  The decision was made to administer Vecuronium.  For those who don’t know, Vecuronium is a muscle relaxant, or more commonly referred to as a paralytic agent.  They pumped her full of pain medication and sedatives and then she was medically paralyzed, which means she can’t even breathe on her own.  Poor Averi will not be responsive for several days until the infection has been cleared from her body.

That said, a harsh reality hit me today.  My daughter is now completely reliant on the machines to keep her alive. 
Daddy’s little girl is on life support.

I pray constantly that my little girl will pull through.  She is such a light in our family and a joy to have around.  It pains me to see her suffer.  It pains me to think there is nothing I can do to help her.  I love her.  Tiffany loves her.  Kaili loves her.  And we pray she will get better and come home soon.  She is our life support.

Who doesn't love someone like Averi when she has such a contagious smile? 

~ Dan

PICU - Take Three

It has been said, “third time’s the charm…”

This is not very charming.  Averi is in the PICU for the third time in the last 4 weeks, her body again falling victim to septic shock.  Each visit has been a little different, but this one has definitely hit her the worst.

First, they found gram negative rods in her bloodstream again.  We won’t know until tomorrow what specific type it is, but if it’s Pseudomonas aeruginosa like the last time, then she will have to get her broviac lines replaced.  The consensus is the bacteria may have somehow set up shop in Averi’s broviac and survived while we were administering antibiotics over the past 10 days.  As soon as we stopped, the bacteria re-infiltrated her bloodstream.  She is currently on a concoction of antibiotics to fight the invaders.  Not very charming of the bacteria to do that to Averi.

Second, Averi’s blood pressure and heart rate have really been difficult to manage this time around.  During the first two occurrences, once they pushed some saline into her blood vessels her heart rate decreased and her blood pressure came back up.  This time, after pushing four or five saline boluses and one packed red blood cell bolus her blood pressure actually went down – at one point her blood pressure was about 48/20 (her normal is about 100/60).  The ICU physician said he was concerned nothing was working and they had to sedate and intubate Averi so she wouldn’t have to work so hard breathing.  Breathing tubes are not charming at all.  They’ve played with her medications most of the day to get her stats to normal levels and she has done pretty well thus far.

(A solemn sight seeing your charming, little daughter hooked up to so many machines and pumps.)

Third, Averi’s pH level in her blood was a little acidotic.  The normal pH of blood is between 7.35 and 7.45.  Averi’s pH level was 7.18 this morning, which can lead to a host of serious issues.  They have been giving her some bicarbonates to offset the acidosis and her pH level has risen to 7.27.  They continue to monitor her pH levels and hope to have that under control by tomorrow.  Not so charming.

Fourth, Averi’s blood sugar levels were close to 400 this morning.  They had to start her on an insulin drip to bring it down.  When I heard it my first thought was, “Oh please no!  We don’t need another diagnosis.  She can’t have diabetes.  She has too many other issues to deal with.”  After discussions with the physicians they quickly pacified my fears and assured me Averi was not diabetic.  They were just giving her some dextrose to help supplement her cells and tissues, and that there were just some “leftovers” that made her blood sugar spike.  Her most recent blood sugar was at 141, so thankfully we’re pretty good there.

(Try and untangle that mess of tubes and wires.)

All in all it’s been a long day.  Averi has received one-to-one nursing care and the poor nurses have had their hands full.  Overall, Averi has doubled the medications she’s received since her last stint in the PICU.  Thus far, here is the list of medications she’s been given (in no particular order): Cefepime, Vancomycin, Tobramycin, Ceftriaxone, Fluconazole, Pottasium Chloride, Calcium Chloride, Sodium Bicarbonate, Insulin, Hydrocortisone, Protonix, Albumin, Atropine, Acetometaphine, Motrin, Precedex, Fentanyl, Versed, Solumedrol, Milrinone, Epinephrine, Vecuronium, and packed red blood cells.  Needless to say, this has not been a charming visit.

(They've given her so much fluid that Averi's face and body look swollen.)

We are grateful for all the love and support we’ve received and thank each and every one of you for your prayers and thoughts.  Despite this less than charming experience, the care Averi has received has been exceptional thus far.  We will continue to have faith and look forward to the day that Averi will have her charm back.  ~ Dan

Ambulance Ride

I have never seen a child get sick faster than Averi.  She spent the entire morning hanging out, playing with toys, and laughing and smiling.  At lunch time I flushed her broviac lines (we have to heprinize them every day) and Dan fed her 2 jars of baby food with no complaints.

I kid you not, within minutes she went from happy to inconsolable.  At 1:00 she wouldn't let Dan put her down and kept fidgeting.  That's when we noticed that her skin was mottled and her arms and legs felt cold.  We took her temperature but it was normal so Dan continued to rock her and try to keep her warm.

Then the projectile vomiting started.  Once we changed Averi's clothes, I called the Oncologist on call.  After explaining the situation, she insisted that we call an ambulance immediately.  Dan went to change his shirt, believing that he could get to the hospital faster than it would take the ambulance, and was demanded back into the room as I told the doctor to hold on because my face was being puked on.  Averi continued to throw up everywhere and I hung up and called 911.

By 2:10, Dan was climbing into the back of an ambulance with Averi to be taken to the hospital.  She did fine on the ride but picked up with the vomiting as soon as she was out of the ambulance.  Once in the Emergency Department's Critical Care Unit they took blood cultures, pushed several boluses of saline into her line, and put her on CPAP to help with her labored breathing.

As soon as she was "stable", they moved her up to the PICU.

(Averi getting ready for the transfer from the ED to the PICU...

yes, she's sucking her thumb while on CPAP.)