Wednesday, February 23, 2011

Skyler made counts so we had clinic yesterday.  In this phase his counts have to be high enough to be able to get chemo, and if they arent then we have to wait until they come back up.  So instead of drawing labs when we get to clinic and then risk being sent home if we didnt make counts, we had a home health nurse come the day before to draw his labs.  That way they can call me back with the results later that day.  I was hesitant to do it this way at first because when they had come before to help change Skyler's wound vac they just seemed unsanitary.  I work so hard to keep everything clean so I hate having people come in especially when I dont know what kind of patient they were just helping.  For all I know they just saw someone who was sick and coughing all over their scrubs.  Ever since his diagnosis I think about these kinds of things all the time.  Yup, I am now a germ a phobe.  Anyway, I agreed to have them come draw labs the day before because it would make our clinic visit alot faster because they could have the chemo ready if they already knew what his counts were.  Lets just say I totally regret this decision now.  It was a horrible experience.  For starters I hate letting anybody else touch Skyler's line.  Since we have been home I do everything for him.  I change the dressing, I give his IV anitfungal through the line, I change the caps and I also hep lock his line everyday.  So Im used to doing it a certain way and I take the time to do everything just right.  Even at clinic I get really tense when I have to let the nurse do everything.  But this home nurse came in and didnt even clean the line first before drawing the blood.  Even when I asked her to she only swiped it once and seemed put out that I had asked her to do that.  She also couldnt get any blood return so she had to change the caps and hardly cleaned anything.  She was also touching everything in her dirty bag with her gloves on and then still was touching his line with them.  I was so angry that I told her I would finish the rest.  This is supposed to be a "clean" procedure and it was anything but.  As soon as she left I started crying.  I try so hard to keep Skyler from getting any other infections, so it makes me so mad that someone would come in and put him at risk like that.  From now on I will be drawing his labs and I'll just hand over the blood when they come so they can take it to the lab.  So frustrating!  At least one good thing that came from this though, is that I realized that the nurses at clinic are actually good at what they do (At least better than this lady anyway)  So now I feel I can relax a little more when Im there.

At clinic we got a new nurse that we havent had before and I loved him.  He knew what he was doing and I felt really comfortable with him so it made our visit go alot smoother today.  Plus having our chemo already ordered and up from the pharmacy was great.  Since all of Skyler's counts looked good, they gave him the full dose of Vincristine and upped his Methotrexate dose again.  It feels good that he was able to actually receive a normal dose of chemo, but also a little scary because I dont know how his body will tolerate it.  He has done really well so far so Im hopeful that he will do ok.

I havent talked about his pressure sore on his bum for awhile but its actually closed.  Yay!  Before it closed though it was still tunneling up a little. (So there was still an opening under the skin)  I was having to put some medicine that kind of looked like felt up into it to keep it so it wouldnt close completely while it was still tunneling because that would cause an open little pocket that could get infected.  It was still tunneling a couple days before it closed so I just dont know if the tunnel closed as well or if its still open alittle under the skin.  The only way to know is if it gets infected, so that has me worried.  Also Skyler was in a lot of pain with it last night, so I ended up having to give him his Oxycodone to help.  That was worrisome also but it didnt look red or inflamed so Im hoping it was just because he sat on it too long or something like that.

Overall though Skyler is doing amazing.  I still look at him and just cant believe how good he looks.  He has a lot of energy, he is eating a little more, he is laughing and playing and walking more.  I even gave him a little haircut today because his hair is still growing like crazy.  It has a different feel to it though.  Its really soft and fuzzy like baby hair.  Its going to fall out again with this next phase of chemo but for now its so great seeing him with hair again.
Prayers are answered and miracles do happen.  Thank you all for your love, support and prayers.  It makes this so much easier knowing that Im not alone.
      Skyler wanted me to put this on the blog so everyone could see his new Mario sheets. He loves Mario.


nsudburyfam said...

I'm so glad that Skyler is doing so well. I wish that we could've seen you guys yesterday!

I'm sorry that you had a bad experience with home health - hopefully that won't happen again :(

We think about you guys every single day and can't wait until you guys are past all this hard stuff. I hope the pressure sore keeps getting better with no complications.

We love you guys.

Jami N. said...

That home health nurse has obviously not seen the effects that a line infection can cause. Good for you for telling her to stop and finishing the task yourself! Skyler looks great!

Anonymous said...

You guys are never far from our thoughts and prayers. skyler gets more and more handsome with each post :). I am so mad at that nurse tonight. I hope you never encounter a person like that again!!!

suzie said...


YOU ARE A BILLION% SOOOOOOOOOOOOO SMART AT HOW ANAL U R BEING WITH THE CLEANLINESS ISSUE! I can't stress enough how right u r for being a "germ phobe" truly is the ONLY way. My mom had cancer doing intense bouts of radiation/chemo for 2yrs and we all (8 kids) and my dad had to become absolute weirdo freaks about EVERY LITTLE thing we did!!!! And if ppl like that dumb, ignorant (sry..I had to say it) nurse and if anyone feels put out by ur requests...then that's their problem. Your protecting the most most precious thing in this world to skyler right now....his health and immune system. With some becomes so systematic to them...its careless! Sorry for my tangent...those type of healthcare wrkers just urks me sooooooo bad. And I just wted to tell keep it up, if not more, be anal all u want and need to be for that perfect boy of urs. You two r inspirational!!!

*suzie from Az

suzie said...

Also.....I tried voting for skylerd picture several times in the last 2 days and I have been following what u said to do and it won't work. I don't know if I'm just doing something wrong or what?! I wted to vote for him, I even got my sis's all to vote for him too and they too said something isn't wrking.

Suzie from az

Anonymous said...

Crystal,, you stay strong!! and know that you are 100 percent correct, this is your baby and his life depends on avoiding infection of any kind,, and honestly if there is an angel on earth it is your little boy....

love the sheets!!! so cute

Zach's mom!!

Anonymous said...

Your little man is such a doll! I love reading your posts. I wanted to say that I totally relate to what you were saying about being a germ phobe and how you have that anxiety when someone new is going to provide care with the lines or anything that required a good sterile technique. When my son was first diagnosed, I was more hesitant to say something and I would want to cry afterwards because I had just seen something (like poor technique) that made me cringe and then I was mad at myself for not speaking up. I got over that though...for your own sanity, don't be afraid to tell them (ANY care provider that cares for your son) exactly how you want it done...make it clear before they touch him. If they are offended, too bad! He's your whole life and to them he is their patient....a good nurse will respect your wishes, will understand where you're coming from and will take steps to do it just how you want.
-Krin (and Mathias)

lindsay Roscoe said...

I think the nurses could learn alot from you. It's amazing that Skyler contracted so many infections while he was in what is suppose to be a sanitary enviroment. YEt when he has been home he has done great because you really do take the time to clean things properly. It always gets me when the nurses don't even gown up. That being said. Miracle do happen and your family is walking proof of that. Skyler will always be a walking light of HOPE for our family.

Anonymous said...

I have been reading your blog for quite some time now and I must say your little guy is a strong one...and so are you! My daughter was born with heart defects and we had to be at PCMC too but reading what you have to and all you have been truly are amazing!

BTW - If you felt comfortable about it, I would call the home health place and let them know what happened. This lady will probably keep doing this again unless she is told face to face about it with someone who her "authority". Too bad she didn't consider you authority enough.

Cyndy said...

Skyler is so lucky to have you!

Kathleen said...


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Anonymous said...

I am nearly in tears every time after I read your blog. Skyler is amazing and he is a real fighter. I love working with children because of how resilient they are. I'm sorry that the home health nurse was so inconsiderate. I remember my mom was always very protective of my PICC line and she had so many fears of getting my line infected and I didn't even have a compromised immune system. I remember having some nurses that seemed pretty careless when it came to sterile procedures. I hope that my own experinces form being a patient will help me be a better nurse once I am able to complete nursing school. I hope things keep going well. You and Skyler are always in my prayers!

Amy said...

Those are way cool Mario sheets!:)
We are so happy to hear Skyler is still doing good overall...he's come a long way already!:)