Friday, January 14, 2011

We had clinic again today and it went much better.  It wasnt nearly as crowded as it was on Wednesday and I knew what to expect this time so it went more smoothly.  They were also able to get us straight back to a room which was really nice.  The one thing that really bugs me though is that it seems like no one knows how to work with his central line.  We are using his dialysis catheter as his central line instead of a port like he normally would have and I have to explain step by step how to use it.  Its pretty frustrating, I wish I could just take it out of their hands and do it myself.  I made the poor nurse hep lock his lines all over again, because lets face it, she had no clue what she was doing.  Im getting really used to putting a smile on my face while not so sweet thoughts are going through my head.

Skyler is doing so well at home.  We are finally starting to get into a routine and it feels great.  Today my sweet dad went and bought Skyler one of those bike things that you plug into the TV and do games by pedaling.  He wanted to find something that would start exercising his legs and this is perfect.  Skyler loves it!  He did alot better at pedaling than I thought he would.  He continues to amaze me everyday.

Today in the car on the way to clinic he asked why he had to get pokes all the time.  I explained to him again about his cancer and that they need to test his blood alot.  He then said "Im so glad that my friends dont have cancer so they dont have to get pokes too."  How sweet is that?  I thought it was so sweet that instead of being sad that he had to get pokes, he was happy for his friends because they didnt have to.  Man I am one lucky lady to be his mama!

                          I love kissing this little guy but as you can see he is getting sick of all my kisses

Riding his cool new bike!


Michelle and Sean said...

So glad he is doing well!! Hope he continues to improve!! He is such a sweet little boy!

Anonymous said...

So glad clinic was better for you guys.

I completely agree with you- what a sweet little man! Melts your heart.

I love these pictures. I can't believe how well he is doing! It is fabulous.

I totally get the kissing them all the time thing. I liken myself to Pepe LePew and Daphne to that poor cat Pepe thinks is a skunk. That is our day in a nutshell.

Yay for being home!

Amanda said...

Okay, that is the sweetest thing ever! What a thoughtful little man Skyler is. Once again I'm amazed by him.

That bike is PERFECT! What a great idea! It should be new protocol to give them out to the cancer kids when they leave the hospital.

About clinic, I am so glad things went better for you guys and it wasn't as crowded, and I'm sorry they don't know how to work with his line. That would be extremely frustrating!

ps, I love seeing Sky in "real" clothes. It seriously made me smile. It's a small step towards feeling like your not in a hospital and more like home. :)

Anonymous said...

I know it can be frustrating with the nurses. I am an LPN and about to get my RN. All I can say is that school doesn't teach us much about specialized things. And if a nurse has only worked in one area and is use to one thing it is hard when a patient comes in with something different then they are use to. On the other hand if you are totally not comfortable with the nurse remember you always have the right to ask for a new one and don't EVER feel bad doing it. I am so glad things went a little better today for you though. Skyler is looking GREAT!

Tammy said...

Yeah for being home. He looks so good. That looks like a great idea and your dad was awesome to think of that. Aren't those extensions awesome for the pump? I credit my son being able to stay in one place and entertaining himself four hours to that pump that only let him play in a 3 foot radius.

He looks great and I hope that he continues to improve by leaps and bound.

lindsay Roscoe said...

HEHE!! What happiness! I wasn't impressed with the nurses at PCMC myself. I think they could do a whole lot more with their time then sit and gossip about all the ladies they work with and all the parents coming in and out. Our room was right next to the nurses station and I sat 14 hours listening to them talk about one person or another. It was very disappointing. They should be learning how to access every kind of line port ivy whatever it may be. If they time to gossip they have to much time. It creates such a negative enviroment. It was frustrating to me. I discussed it with the drs that day.

Erin said...

Clinic is a whole new adventure when you're used to being in-patient, for sure!

Skyler is looking so great. It's so nice to see him at home with smiles on his face, and what a thoughtful, caring little man you're raising!

Kudos to your dad for thinking of such a great idea with the bike games. Great exercise for Skyler's legs and he can have fun while he's doing it! Perfect!

Briana said...

boy, i'm behind! but i just wanted to say YAY, YAY, YAY!!! for you guys! it is amazing to hear about skyler being at home. what a miracle. truly inspiring to see it come to fruition. you guys are amazing!

i'm glad to hear clinic is getting better. someone else beat me to it, but i was going to say, use the valet parking. trying to find a parking space there is for the birds! :)

Brice.TawniWilliams said...

SOOOOO happy you both are HOME!!