Wednesday, March 13, 2013

It's Bone Marrow Day...

I had been dreading this day for quite some time.  So much so that I didn't sleep one single second last night.  I was nervous.  I did laundry at midnight.  I vacuumed the house at 3am.  Cleaned the bathrooms and the kitchen at 4:15am and other small chores in between.  I just couldn't keep my mind off of today.  I'm not really sure why because we have gone through this before so I knew what to expect.  I know it was a little more difficult for me because my little Zekey-Pants was staying the night at his daddy's house.  I couldn't go in and check on him and kiss his cheeks whenever I wanted. 

I arrived at the hospital around 7:40am.  I sat in the parking garage waiting on Zeke and Kofi to get there.  Kofi finally let me know that they were stuck in traffic and running late.  So I went into Dr. K's office a little before 8am to let them know that Zeke would be coming but he was just running a few minutes late.  When I walked in the door my parents were already in the waiting room.  It was nice walking in and seeing them, especially since I was a little anxious and Zeke wasn't there yet.  Shortly after 8am they arrived.  I was pretty good at documenting times and what took place today...along with pictures, of course, to share.

I took this picture of the hospital as I pulled into the parking lot

 
8:12am Marqetta called us back into the office.  She put Zeke on the scale, check his height and blood pressure. 

 He weighs a whopping 42.3 lbs.
 
 He is currently 44 inches tall
 
I was filling out paperwork for this, so I missed his blood pressure.
 
 
8:19am We were sent into the playroom until Dr. Mohamed was ready to see Zeke.
 


8:21am We were sent to room 1 to see Dr. Mohamad. 
8:24am-8:32am Dr. Mohamad arrived in the room to look over Zeke.  He introduced himself to Zeke.  Z was a little unsure about him.  He doesn't like change and couldn't figure out who this guy was.  Dr. Mohamad asked him how he had been feeling and told him a little bit about what was going to happen today.  Zeke was a little nervous because he didn't have the cream on his arms so he wouldn't feel the poke.  I assured him he didn't need the cream today, but he didn't understand why not.  Dr. Mohamad looked Zeke over.  Before he left he told us that Dr. K would be doing his bone marrow today (yay!) since I had made that request.



 
8:37am They moved us back over to the playroom.  We played around and tried not to worry about what was going to happen with Zeke today.




8:50 A staff member, who we didn't know, came in and gave me his orders for the bone marrow to take downstairs.  We do not have a follow-up appointment until we have the results back.  They will call us to inform us of our next appointment at a later time.  As we walked out, Zeke grabbed a toy out of the toy box and we checked out.

 He digs and digs until he finds the perfect toy.
 
 This pool table was the lucky toy of the day to go home with Zeke.  Before I could even check out he had it opened up and was playing with it on the waiting room floor.
 
 Headed out the door to go downstairs.
 
 On our way to Level AA for his bone marrow.
 

8:57am We arrived at level AA and got all checked in.  Zeke had his bracelet put on his arm then played with a train set for a while before getting called back.




9:06am We were called back and put in room 3...the same room we were in last time.  As soon as Zeke walked in the room, he jumped on the bed and laid there stiff as a board.  He was getting more nervous at this point.  I gave him his Oh Baby (blanket) and his shark Chomp.  He always likes to guess what color of a shirt Dr. K is wearing that day.  He guessed blue and white stripes...then changed his mind to green and white stripes.  That conversation always helps take his mind off of things so he won't be so nervous.  Kofi ended up getting on the bed with him and held him for a little while.

 He's a little nervous and not exactly sure what is about to happen.  He doesn't remember going through this before.
 
 Oh Baby and Chomp help make it a little better for Zeke.
 


9:10am Nurse Ann, who we only saw this one time, and Nurse Stacie came in.  They turned on Dora the Explorer and was going to begin Zeke's IV.  Before anything happened Zeke was being Zeke, cracking jokes and making everyone laugh.  Then they pulled out the needle.  Actually it wasn't a needle but numbing cream.  He was nervous and didn't understand that this would numb the area.  Once he heard the 'rocket' sound,  he could tell it wasn't a needle.  However he didn't like it!  They were unsuccessful with his iv the first try in his left hand, which I personally thought was not the best place for it...she had a hard time finding a vein she could see well.  So then she tried again in Zeke's right arm.  If this didn't work I just knew Kofi was going to say something.  Being a paramedic, he is good at finding veins.  It was hard sitting there watching her stick the needle in his little hand and then moving it all around trying to find the vein.  Ouch!!  Zeke's mood quickly changed at this point.  Now he was pretty grumpy.  He didn't want to be touched or even looked at. :(  I get grumpy when people are poking me with needles too.

 Zeke cracking jokes with Nurse Ann
 
 Attempting to put an iv in his left hand.
 
Numbing his skin...
 
 Trying to find his vein.
 
 Still trying...
 
 ...then realizing they need to try again.  :(
 
Zeke was nervous at this point, he didn't want another poke.  She was letting him know it would be ok. Thank goodness she was successful this time.
 
 
9:22am Nurse Ann sent his blood to the lab.
9:23 am Nurse Stacie attached his iv.

 
 
We sat around and waited for what seemed like forever after this.  Zeke was somewhat cranky.  He was tired, didn't want to be touched, and was ready to go home.  He was getting upset with Kofi for messing with him.  He was not in a good mood.
 


 
 
10:07am Dr. Barnes, the Anesthesiologist, and Dr. K came into the room.  Dr. K was wearing a green, blue, and white striped shirt.  Gosh, Zeke gets it right every single time!  Zeke has had some behavior issues at school since we came back from winter break.  I couldn't figure out why all of a sudden he would go from being a good student to begin having problems in the classroom.  I created a theory about this and called Dr. K about it a couple of weeks ago...when his platelets are elevated his behavior seems to be out of control.  When his platelets lower, he is much better behaved.  As soon as Dr. K came into the room he said that he liked the theory that I came up with about his behavior and platelets having a relationship.  He said he could see how that could very much so be a possibility.  The high serotonin levels when the platelets are high could cause this, but he is not sure he would be able to prove it medically.  He does have one other patient with high platelets.  When he platelets are elevated, she does not have good behavior.  When they lower, she is better behaved.  Very interesting!  Anyway, he informed me if the results come back negative again this time he is going to consult with another platelet doctor about possibilities of what could be going on.    Dr. K informed us that he would be doing a bone marrow biopsy and aspiration today.  They were also going to do genetic testing, like they did last year. 
 
 Dr. Barnes
 
 Dr. K coming in to say hi to Zeke.  He had been crying and very emotional.  He was ready to get the heck out of there.
Dr. K pretty much letting me know that I am brilliant for the theory I came up with...I kid, I kid...kinda!  :)
 
10:14am Dr. Barnes is getting ready to give Zeke his 'milk.'  Kofi moves down off the bed and away they go...
 
 Dr. Barnes is ready to go.
 
 Kofi moving down off the bed.
 
 Zekey getting his 'milk'
 

 He's almost out...laying him back.
 
Big yawn...
 
And he's out.  Dr. K is rolling him over to begin the bone marrow. 
 
 
10:15am We were sent out into the lobby to wait until the procedure was over.  Kofi didn't leave the room.  I had a feeling he would stay.  I didn't mind...I kinda was interested in getting the scoop of what happens while we are away in the lobby.  As we waited, I couldn't help but pace back and forth.  Luckily my parents seemed to be pretty calm.  We were out there waiting about 20 minutes...which felt like an eternity. 
 
10:37am Nurse Stacie came into the lobby to get us.  She said that they had been done for a while but needed to move him to a different room which took a few minutes.  She said Zeke did great.  He woke up briefly one time but fell back asleep.  When we arrived in room 6, he was out like a light, sleeping really well.  Dr. K was standing just outside of his room.  He told me that Zeke did great.  He put some Neosporin on his wound and told me if his Band-Aid began to come off to replace it with a clean one tonight.  He needed to wear his Band-Aid for 24 hours without getting it wet.  Dr. K told Kofi based on what they find will determine if they put him on a platelet lowering medicine called Anagrelide.  I'm not so sure this is the route they are wanting to take though. 
 
 My little Zekey-Pants sound asleep.
 

 
 
10:47am Nurse Stacie thought it would be a good idea, and so did we, to take his IV out while Zeke was asleep.  He was so emotional about getting it put in and anyone touching it that we thought this would be best.
 

 
 
10:50am  As Nurse Stacie was finishing up getting him all unhooked, he woke up.  He seemed to be doing pretty good.  He didn't appear to be in any pain at this time.  He wanted to get all of the sticky wires off of his chest and was ready for his orange popsicle!!
 


 
 He was starving and chowed down.
 
Yummy!
 
He was still really hungry after eating his orange popsicle, so he got a blue one too.
 
 
 
10:57am Zeke's lab results came back.  His platelets are at 995,000. 
Zeke seems to be doing pretty good.  He isn't really complaining about anything.  He's just ready to go.
 
 
 
11:09am Dr. Barnes came in to check on Zeke and make sure that he was doing okay after waking up. 
11:11am Nurse Stacie came in to tell us that we could go home.  Yay!  :)

This is the face of a boy who is ready to go home!!
 
 Kissing his Nana bye.
 
...and his Papa.
 
 
As soon as we walked to the lower level of the parking garage and put Zeke in my car he began crying that he was in pain.  I asked him where he was hurting and he pointed to the right side of his back where they did his bone marrow.  He cried so much that I talked to the office about what we could do for the pain.  He didn't complain of any pain last year when he had this done.  He rarely complains of being in pain, so I was worried.  He was given some Tylenol but still complained of pain.  Once it was manageable, we headed home.  On our way home he wanted something sweet to eat, so I stopped at Merritt's to get him a cookie.  When we were inside he was crying that he was in pain still.  My heart hurts for him.  :(  I got him his cookie and we headed home.
 
 
When we got home we were both worn out.  I put on Wreck-It Ralph and we cuddled up on the couch and both fell fast asleep.  When we woke up a couple of hours later, he was still in pain.  I'm hoping this doesn't last long.  He has been given more Tylenol.  He has been playing...and relaxing.  We should have his test results within a week.  Thank you all so very much for your thoughts and prayers.  We greatly appreciate them!!  I will update once we have results.  :)
 
Until next time,










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Thursday, March 7, 2013

Student-Led Conference

I can't believe it is already time for Zeke's spring conference.  Not only that, but I can't believe he is old enough to lead his conference.  It was so cute.  When we walked in, we picked up his conference table tasks.  There were four tables set up for us to visit.  Each table had an activity that he needed to talk to us about (my mom went with us) or show us. The first table we visited had a folder of some of his art in it.  He went through the folder and talked to us about some of the pieces of work he had created.  He loves art and was probably the most proud about this activity.




At the next table he was able to show us how he could cut a straight line, a curvy line, and a zigzag line.  He did a great job cutting.
 


When he was finished cutting his lines he could select a puzzle to complete for us.  He loves working puzzles so I knew this would be fun/easy for him.  He selected the doctor puzzle to complete.


Once Zekey was finished with his puzzle we moved over to the next table where he could create an 'AB' pattern out of cubes.  Once he completed his pattern then he needed to count objects, in this case bugs, of ten or more.  We reached in and grabbed a handful and he counted 16 for us with no mistakes.  Zeke had been singing his new favorite song, Scream & Shout (the clean version, of course) and he kept singing "Britney, Britney."  It was really funny.  He was using his AB pattern cubes as a microphone to sing his song.




Next I gave him a list of upper case letters, all out of order.  He had to tell me what the letter was and I needed to circle each letter he said incorrectly.  He knew every single one of his upper case letters.  Then we moved on to lower case letters and repeated the activity.  He said 'b' on 'd' and thought the 'q' was an 'a' but other than that he did great!


Then he did the same things with his numbers...


Finally, he had to match up upper case letters to lower case letters and tell us what sound each letter makes.  He did a great job!



I was very proud of my little Zekey-Pants tonight.  Through the activities he showed us tonight I could see how much he has learned this year.  I am so happy that he has an amazing teacher who works really hard teaching him wonderful things.  He just loves and adores her!

I'm sad my little boy is growing up so fast.  Before we know it he will be in kindergarten.  :(  Time flies way too fast for this momma. 

Until next time,
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Wednesday, February 27, 2013

Please No, Not Again... :(

Wow, it has been a long time since I have posted anything on here.  I figured now would be a great time to get back into it considering Zeke's health is one of the reasons why I started writing a blog in the first place.  Well, it has been a little over a year since Zeke had his bone marrow and it looks like he will have another one soon.  I post on Facebook about our doctor's visits.  Basically over the last year we haven't learned anything new about what is going on with him or inside his little body.  Since his last bone marrow his blood platelet counts continued to improve every month.  They dropped from the original count of 1.432 million down to 612,000 by the end of 2012.  I was very excited that he was continuing to do so well and his counts were coming down.  I had been told by the doctors that this could be 'just one of those things that happen for no reason' and I was starting to believe that.  In January of this year we went back for our monthly appointment to check his counts.  When I got the results I was incredibly sad and confused.  His counts in January were 1.472 million...the highest they had ever been.  I didn't understand why.  I don't understand how it took a year to get them to come down as much as they did just to shoot back up higher than ever before over night.  Since that appointment we have been going in every 2 weeks for testing.  His counts came down a little, but still remained over a million at 1.075.  Yesterday his counts were back up a little at 1.263 million.  Today Zeke's nurse, Laura, gave me a call to tell me the results from his labs yesterday.  She informed me that Dr. K wants to do another bone marrow as soon as possible.  I stressed the importance of how I want Dr. K to do his procedure.  He is the doctor that not only I trust, but that Zeke trusts.  Obviously this is not the news I have been hoping for.  I want my little guy to get better, but I also want answers...I need to know something!!  Around 12pm the hospital called me back to give me his appointment.  The first available appointment is on March 13th.  The only problem is that is not the week Dr. K is doing the procedures; Dr. Mohamed is the doctor on duty that week for procedures.  I am sure he is a fabulous doctor...I just don't want him doing it.  We have only been in the office one time when Dr. K was over booked and Zeke had to see a different doctor.  That didn't go over well with Zeke.  He was beyond upset and didn't understand where Dr. K was.  I want my little man to be as comfortable as possible...and to be honest; I want to feel good about it too.  Dr. K did his first one and everything turned out fine, so that's what I want to happen again.  The nurse said that Dr. K would be doing rounds in the hospital on that day but she would talk to him for me to see if he would be able to make his schedule available to do Zeke's procedure.  Soooo....hopefully he can!!!  On the morning of the 13th, we will check in at Dr. K's office at 8am.  Dr. Mohamed will look over Zeke and sign the orders for the procedure.  Once that has happened we will go downstairs for the procedure and hopefully Dr. K will be able to come meet us down there.  I was looking at the blog post I wrote last year about this.  It brings back memories of looking at those pictures and reading what happened that morning.  I want to thank you for your prayers for Zeke.  I do believe in the power of prayer.  I am grateful to all of my wonderful friends and family and for your love and support for Zeke during this past year.  It means so much to my family.  I promise to take lots of pictures and keep you posted on his procedure!


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Thursday, May 31, 2012

Mommy and Zekey Breakfast

I love all things summer!  My most favorite thing is getting to spend it with Zeke.  We try to have a daily activity of some sort.  Today he was going to his daddy's house, so we decided to go out to breakfast together.  This is something we don't do on our own often.  We usually go out to eat with Papa and Nana.  If you have never eaten with a 4 year old before, it can be quite the experience.  Today was wonderful.  Zeke was on his best behavior the entire time.  He usually gets to take some cars with him anytime we go eat.  This helps to keep him entertained.  He usually gets in trouble because his play voice is so loud.  How ever today he made sure to use his quiet play voice.  We sat down and Zeke started to order before we even got our menus.  Obviously we go there often!  He was ready for some pancakes and fruit.  We played with his cars until the food arrived.  He blessed the food...which I had to get a picture of, then we dug in.  He was a great eater today and we had so much fun talking, laughing, eating, and playing.  I love those special times with my little boy...especially when he is being GOOD!!













I love this little guy to pieces.  I'm so excited to get to spend this time with him over the summer.  :)

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