Thursday, November 4, 2010

Halloween in the hospital, and meds at home!

I have to say, when we left clinic last Thursday, I never thought we'd be headed back with a fevered Wee-Mee the next day! 

Friday started out great...played with the neighbor kiddos outside and seemed in good spirits. Then about 4 in the afternoon you started complaining of a headache and wanted to lay on the couch.  You were totally out in less than five minutes and didnt wake up for 3 hours!! I had made and cleaned up dinner, and we were deciding what to do with the rest of our evening. After you woke up we new pretty quick what we were gonna be doing! You woke up complaining of back and leg pain...I gave you Oxycodone (we cant give you Tylenol cause it would mask a fever, and Ibuprofen thins your blood and thats a no-no for leukemia kids) and that seemed to help. 
Sooo sleepy!

Then you started to get droopy heart sank. You, and your sisters and brother have always gotten these glassy looking droopy eyes when your sick and have a fever. As soon as I saw those sad eyes I knew... We took your temp and it was 100.4. The docs say when its 100.4 you wait an hr, retake the temp and if its the same or higher we have to bring you in.  We called after 45 minutes and the nurse said to check again in 30-45 minutes and if it had gone up to even 100.5 to bring you to the ER.  So, when the time came we checked and decided it was time to take you in.  Its always nerve racking and scary.  You were scared and didnt want to go.  Its been a long time since you had to go in for a fever so we had to do a lot of reassuring and comforting.

Once we were ready to go (11pm) dad and I decided it'd be better for Tucker (who was asleep in bed) if I stayed home with him.  Hes been getting teeth and so we knew if we woke him up to bring him down with us he'd probably be up all night, and fussy. It was so hard for me to watch daddy drive away with you in the truck and stay behind. I had to fight back the tears. I want to be a good mommy to ALL my kids and it stinks when you cant be there for everyone.  Alyssa and Carly had gone to have a spend-over at Grammy Shepherds and so it was me and Tucker, alone in the house, while dad took you down.

I told daddy to keep me posted on what was going matter what time it was.  He called me at 2am and said that your ANC came back at 600, but since you had been getting daily chemo, at home they knew it was going to go dip down even lower.  They decided to admit you and have you stay over. The rule is that you have to be fever-free for at least 24 hours before you can go home...

Well, Saturday (Halloween) you had a pretty steady fever. Everytime the tylenol wore off it'd spike back up (they can give you Tylenol at the hospital, but we cant at home). You seemed to be feeling ok though....your spirits were good.  Dad went home about noon to spend some time with your sissy's and take them trick-or-treating, and Tucker and I stayed to keep you company.  He was a bit more of a handful this time around, but he kept you laughing with his silly squeals and squaks.  You kept mom busy trying to keep you entertained!  We did about 5 Halloween crafts, and played with a doll house they brought in, and watched movies, and read books, and colored.  I have to admit it was kind of nice to hang out with you and not have to worry about going anywhere or getting anything done...just some 2 on one time (Tucker was there too!) I should do that more often...just play.
They're amazing at the hospital..they really aim to please.
Look at you..actually having fun in the hospital!

This was Bauer. A therapy dog that came to visit, and you
 LOVED him. You love all the Therapy dogs we meet. Bauer
 is a King Charles Spaniel and you got to feed
 him his favorite treat...Cheerios!
 About 4pm on Saturday they had to give you another dose of Tylenol and then your fever never spiked back up. I kept waiting for your fever to come back again but was so relieved when it didnt! The nurse said if it it stayed away we could go home the next evening!

Sunday morning came and we found out your ANC had dropped to only 300, and your blood levels were low.  They decided to give you another blood transfusion, and said that we could still take you home, even though your ANC was so low, as long as your fever didnt come back.  It didnt, but we had to give you IV antibiotics every 8 hours until your ANC was 500 or higher.  They said they would send home health out the next Thursday to check it again.  I never saw a happier kid! You were so excited to come home!
Blood...thank heaven for donors!

Eating pepperonis and getting blood..two good
reasons to smile!
I am always amazed at how much better you look after they give you blood! Your cheeks get all rosy and your energy levels go up. It really brings the life back to your little body.  It makes me think of that story from the scriptures...The one where the lady has had a blood disorder of some kind for 12 years, and spends her fortune away on doctors to heal her and no one can.  She hears Jesus has come to town and feels like if she can just get to Him and touch His robe she would be healed.  She struggles through the crowd and touches the hem of Christs garment and is healed. Jesus could feel the power to heal her leave His body and he spoke to her and blessed her....I am always amazed at her faith, and yours.  I can see you reach out and faithfully accept the help of those around you...and its are being healed!  Im so grateful for modern medicine! What a blessing it has been to our family! That, along with the countless prayers and priesthood blessings, are why you are doing so well!

Even though I knew it was bound to happen, I had a harder time than I thought I would seeing you in the hospital again. It brought back a flood of terrible memories for me. Im grateful the experience was much easier on you this time.  It'll be good for both of us to replace old, bad memories with good ones.
This is you "flexing all your muscles". Dont know
why you do it that way, but I dont correct
you cause its cute!

Coming home and giving you the antibiotics was a strange experience too. I can remember when we brought you home from the hospital the first time after you were diagnosed and we had to give you antibiotics. I was terrified! Thats putting it lightly. I was so afraid I would forget something or do it wrong or mess it up somehow. Plus I didnt think I could do it. We got through it and this past few days of giving antbiotics was nothing.  I kept thinking, while I was hooking you up to the medicine, "This is no big deal..I cant believe I've reached a point where doing this to you is no big deal." It was almost an out of body experience and such a stark contrast to the way I felt  5 1/2 months ago.  I didnt know whether to laugh or cry...
We've found when you suck on a hard candy
while getting your port flushed it doesnt bother your
nose as much. The ball in your hand is your
antibiotics. Kinda cool..its pressurized so we dont have
to hang it from an IV pole.
You were so good about it too. We had to give you the meds at 6am (ugh), 2pm, and 10pm.  I was really worried about the first 6am dose. Not knowing how youd react I tried to give it to you without waking you up...that didnt work.  To my surprise you woke up and said, "Oh hi mom, I didnt know you were there." I said hi and told you what I was doing.  You said, "oh yeah...this is WAAAY better than doing it in the hospital mom!" I couldnt help but smile. What an amazing kid you are and always so positive!

Scott (home health nurse) came today and did a CBC.  Turns out your ANC was exactly 500! Yeah! No more early morning meds! AND you were most excited about getting unplugged! No more tubey for you.  You took a nice long bath with bubbles and a Barbies.
Perfect outfit for celebrating. Complete with cape, dress,
shirt, apron, dress-up shoes and leggings. All essential
for celebrating a few hours free of Mr Tubey!

Your platelets were low...the clinic called and said to watch for bruising and paticii (dont know if that spelled right).  You have both, and when I unplugged your port access it bled for 15-20 minutes.Right through your bandaid, shirt, and undershirt.  Gonna have to call clinic and see what they say in the morning...

No comments:

Post a Comment