This too shall pass

This past Saturday night... Everything was going pretty well.  We decided to give the NG tube another shot.  After some Zofran and Adavan, the nurses got it in place and Tenley didn't even throw up.  I was feeling confident this time would be better.

Tenley taking our picture saying cheese!

After an evening of snacking on sour patch kids and watching Princess and the Frog, I got her bottle and was ready to put her to bed.  She drank most of it and didn't get an upset stomach.  So far so good!  The nurse was great and had explained how they would do things differently from the night before to avoid our previous problems.  - They were going to start the feed at an even slower rate and not boost it up more than once throughout the night.

One little glich... as the nurse tried to pull back some sort of stomach fluid from the tube, just air came back.  After pushing some air back in, she was pretty sure it was in the right spot because of a bubble noise that came right after from Tenley's stomach.

Fast forward to 12:30 am.

I woke up to Tenley gagging and the nurse wrestling with her.  I jumped up and yelled, "What is going on!!"  I couldn't even hear what the nurse was trying to say because Tenley was such a wreck.  The tube was out, there was throw up everywhere, and I finally lost it.

LOST IT!!!!

 I started crying and yelling saying I was so done with all of this!!  No more torturing my child!  I have had ENOUGH!  They were trying to get the tube in once more, and the throwing up continued, so much so Tenley couldn't even catch her breath.  It was beyond awful.  I was bawling and yelled, why are you ruining everything!  I just fed her a bottle before she fell asleep, an 8 ounce bottle of milk!  You people keep sticking S#%* down her throat and making this impossible!!!!!!!!

I have never freaked out at a nurse through this whole ordeal.  Not once.  I hardly even cry in front of them.

They told me I had every right to have them stop and not insert the tube.  I grabbed Tenley and she could not calm down.  She was so tired and upset and was hitting and scratching me and screaming her lungs out.  I cried right along with her.  The nurses cleaned up the mess, and I somehow got Tenley's pajamas off, held her in a blanket, and after another dose of Adavan, she calmed down and fell fast asleep.

I couldn't stop crying.  The nurse came back in and sat down by me in the dark.  She took off her mask and told me how sorry she was... that this was all her fault and it should not have happened.  She said she had tried to pull back fluid to be sure the tube was in the right place before starting the feed, and still nothing came up.  This made her unsure to start the feed, and decided to try and move the tube a bit.  Well once she tried that it made Tenley gag and wake up.  No wonder she was so upset.  What a horrible way to be woken up!

We talked for a long time, and she listened to me cry and tell her all my worries and frustrations.  She sat there patiently listening, agreeing, understanding... and it felt so nice to let it all out.

The rest of that night went smoothly.  The nurse hardly came in, and never bothered Tenley or woke her again.  Tenley stayed asleep until 10 the next morning, with only her diaper and a blanket on.

I woke up and knew that I had to stand my ground and not let that tube go down Tenley's throat ever again.  At least not now, not this round.

I went out and bought every snack food she has ever liked.  I was determined to get her to eat on her own.  After a little break, I went back and she was in a much better mood.  Hoping she had forgotten the night before, I started to offer her the different snacks.  We didn't have much luck.  After a couple of hours passed, she was acting pretty tired, and I could tell her head was getting warm.  Sure enough a fever was coming.

One problem to the next.

Stay strong I thought, this is to be expected.  Fevers are almost a given at this stage.  After some tylenol and starting antibiotics, it was starting to go down.  My sister in law came to stay the night so I could have a break.  I needed it badly.  I headed out and the nurse made sure she had my number in case she needed to get a hold of me.

At 1:00 am my phone rang.  It said Primary Children's.  My heart seemed to stop as I answered.  The nurse said right away that Tenley was fine.  She just wanted to tell me her fever had spiked and was at 104.5.  She went on to tell me her vitals were all good and steady, and her heart rate was a little high, but there wasn't anything I needed to worry about.  She was watching her carefully and started her on another antibitic (that's three now)

How the heck was I suppose to sleep now?  I called Robbie in tears.  I asked him to pray over the phone.  I was spent, and my heart felt heavy.  Then I called my sister and she told me I had to get some rest, and to trust the nurses and know that they were doing everything they could and if I needed to go there, they would let me know.

I prayed my heart out... prayed I could rest and know that angels were with my little girl.  Comforting and protecting her.  My mind was at battle with my heart.  I let my heart win and finally drifted off to sleep.

I only woke up a couple of times, and at 7am, the nurse called to tell me the fever was still lingering, but not quite as high.  She reassured me that all was well, and her vitals were all still solid.  She told me the plan for the day.  Tenley's platelets had dropped down to 10.  Yes, that's it... a normal platelet count would be somewhere around 150-400.  Also, her potassium was running low.

I got to the hospital around 9, and Tenley definitely had some tired eyes.  As I picked her up, I could tell she was still pretty warm.  They gave her a fluid bolus that adds a lot of electrolytes, fluids, and helps her vascular system.

feeling yucky

We had a very easy going afternoon.  A lot of snuggling, and cat naps.  The fever never going under 100. 

She's also had a lot of diarrea.  Not your normal poop... it is insanely stinky.  Everytime she'd rest her little eyes, it would seem like I'd have to change her diaper right after.  Finally around 2:30 she fell asleep and had a nice long nap.  She needed it.  This evening she was starting to get her personality back.  Her temp is slowly going down, and she is taking a few little bites of crackers.
Every little bite counts. 

Dr. Wright came by earlier in the day and said, "let's go ahead and start her on TPN."  She was very easy going about the idea, and understood that the tube was not an option at this point.  I am so thankful for doctors who listen to me, and that keep a positive attitude.  I feel a lot of comfort knowing they are pleased with how well Tenley has done.

not in the best mood... watching Lion King

These are all the medications and fluids going to her central line

A lot of machines at work tonight!

To give you an idea of what happens after receiving chemotherapy, these are what Tenley's counts are today...

White Blood Count  0.7  (normal 6.0-17.0)

Hematocrit  28.8  (normal 34.0-40.0)

Platelets  10  (normal 150-400)

ANC 100 (normal 1500-8500)

(Soon this number will be 0.  This is her nutrifill count.  It stays at 0 for at least a week.)

Once she shows signs of her counts recovering, we get to have our next break at home.

For now, we wait out the storm, but as always... this too shall pass.