Saturday, November 6, 2010

Stressful is the word I would use to describe these last couple of days.  First of all, I have basically become Skyler's nurse.  It seems the only time the nurse ever comes in the room is to push a med, so I have been doing all of his cares.  I know I'm his mom and this is the stuff I do at home normally so it shouldn't be a big deal, but I'm so used to just kind of being a bystander down in the PICU.  He was so sick it took at least a couple nurses to do his cares right.  Last night I had to walk the nurse through how to change his wound dressing, and I could have done it alot better myself if she would have let me do it.  He also threw up a TON last night and I had to basically tell the nurse what to do, how to get him all cleaned up, and to call the resident on call to come evaluate him because I thought he aspirated it. (Which he did and had to get a chest x-ray and the respiratory therapists to come up from the PICU to help clear him)   Its just kind of scary to feel like I know more than the nurse, which I know is not the case, but that's what it feels like right now.  I'm just very grateful that I was able to finish my EMT course right before Skyler got sick because that knowledge has come in very handy these past three months.
 I was able to talk to the Oncologists today about the chemo plan for Sky.  They are going to start him back on the regular road map that he should be on right now and kind of play catch up on some of the chemo he missed.  They are worried about his spleen right now because it is really big.  He came in with a bigger spleen because of the Leukemia but it is getting even bigger.  He has to get platelet transfusions everyday because somewhere in his body all the platelets are being eaten up and they think the spleen is the culprit.  They did an ultrasound which showed the spleen looking very enlarged and patchy but was pretty inconclusive, so today they did a bone marrow aspiration to check and see if that's where they think the platelets are going, and also to check for blasts in the bone marrow (cancer cells)  They also did a lumbar puncture and put chemo into his spine.  The good news is that they didn't see any blasts...yay....but they do think the spleen is what is eating up all the platelets, so it looks like he will probably have to have his spleen taken out.  It isn't a for sure thing yet but I know it will most likely happen.  They have to wait until Skyler is recovered more though because he couldn't tolerate a huge surgery like that right now.  It looks like we will be here until February at least so I need to start changing my attitude about this floor fast because this is our new home for awhile.
One thing that made me smile today is a comment that Skyler made which shows his little personality coming back.  He asked for something to drink and I told him I could get him a slushy and his eyes got all big and happy, gave me the cutest smile and said "Saweet!"  I started laughing my head off.  He's back and I couldn't be any happier!
A therapy dog came in to say hi to Skyler today and he loved it.  You can see him stretching so hard to pet the dog.  I love the little determined look on his face right here.


Jen Beckstrand said...

Thank you for letting us come last night. Highlight of our night for sure! We'll bring those DVDs soon! Love you!

Lindsey Hill said...

Its such a blessing that you did do that emt course!! Teach those nurses a thing or too ;) I am so glad to see skyler coming back!!!! Please let us know when he can visitors emma is dying to see him, she is so excited to know that he will be able to talk to her!!!
Love you!

nsudburyfam said...

You probably do know more than the least with what's best for Skyler. I hope it gets a little easier for you, I'm sure that is a really tough transition from having nurses that are so attentive. I hope things keep going well with Skyler That's really awesome that there are no blasts in his marrow! Hopefully the spleen can get figured out and he can really start feeling better each day!

jenny said...

hi..i have been reading ur blog 4 a week now n praying..btw i had some doubts i.e. Which cancer Skyler is having?is it leukaemia?does skyler have a dad?

Dani said...

I know Chase and Sky were in different situations and if I were you I would be upset that the nurses weren't sure what they were doing. When we were there Chase wouldn't take his meds at all...he hated them. The nurses wouldn't even TRY. They would bring them in and say this is the important one that needs to go in now and the rest you can try throughout the day. REALLY?? Isn't that their job?
If you are comfortable doing things that they aren't I say push them aside and do it, but it is their job and they should know what they are doing....SAD that you have become his nurse. It will come in handy though once you guys get home because you will know exactly what you are doing.

Mindy said...

Reading this post reminds me a lot of when Michelle was in the hospital with Maggie. When I would go to visit, the nurses would make me so mad because a lot of them didn't seem to know what they were doing. I know Michelle got very frustrated at times and understandably so! It's just sad it has to be like that. You are such a strong person Crystal, it's amazing!! You and Skyler have already gone through enough as it is. I pray for you both constantly!! You both are a huge inspiration!! Honestly!