Wednesday, January 12, 2011

Im sorry I havent been to good at blogging lately, I have just been so exhausted.  I am constantly on the go taking care of all Skyler's needs, and if my body isnt going my brain is constantly on the go.  I have so many meds due at certain times, I have different nurses and therapists and delivery guys that are always calling, I have to remember exactly how to access and hang his IV meds and if I dont do it right I could really hurt Sky.  I am getting no sleep because I am constantly checking on him and making sure his feeds are still running and the bag is full.  Man this is a full time job but I am so thankful that I can do these things for him here at home.  It makes me feel so good to be able to take care of him by myself.  Im so busy buts its so worth it.  I remember sitting in the PICU and thinking that I was starting to forget what our normal life before cancer felt like.  I was starting to wonder if I would ever be able to see him be himself again and hear all those cute, funny things he would always say, especially after that scare when they told me his brain matter was shrinking and that they didnt know if he would be himself again when he woke up.  But Im definitely seeing his old self.  I love it!  He is just so dang cute, he is always making me laugh and smile. 

Today we had our very first clinic visit.  Clinic is where the oncology kids go to get their chemo when they are outpatient.  They have an infusion room with chairs lined up against a wall, this is where the kids get their chemo and transfusions.  With Skyler's type of Leukemia you are supposed to go in once a week in the beginning to get chemo and then after awhile you go once a month.  We should have been doing this all along, but with all the complications he has had he has just been getting all of his chemo inpatient.  So going to clinic for the first time today was a pretty big thing for us.  I kind of felt a little more "normal."  This morning, however, started out rough.  He woke up screaming in pain from his wound on his bum, and what made it worse, the home nurse had to come and put a new wound vac on because his wasnt working right.  This is always so painful for him.  By the time she was done he was screaming bloody murder from the pain.  I have never seen him in that much pain before, but I wasnt able to give him anymore pain meds because I had already given him the maximum dose he could receive.  Obviously it wasnt touching the pain so I called the hospital to see if I could give him more.  After twenty min of getting transferred from one person to another and Skyler screaming in the background, they finally said I could give him another dose of Oxycodone.  This took the edge off but he was still in pain.  When we got up to the hospital I couldnt find a close parking spot so I had to park far away and lug all of his equipment with me and push his little stroller at the same time.  When we got up to clinic it was PACKED!  To go from being stuck in the hospital for so long and not letting anyone come in the room unless it was the nursing staff because I didnt want any germs coming in, to walking into a room full of people about gave me a panic attack.  To me it was a giant germ fest and I was totally overwhelmed and starting freaking out.  I was told from other cancer moms that there are some rooms you can go in to be away from the other kids if you request it, so I immediately said I wanted to be in one of those rooms.  Unfortunately they didnt have one available because they were so busy.  They told me I could wait out in the hall until it was our turn though so we didnt have to be by all those people in the waiting room.  When we got out in the hall I was almost in tears, I didnt know how I was going to be able to go back in there.  I feel like this whole cancer thing has turned me into a freak.  I was panicking just thinking about it.  Thankfully Skyler's Oncologist happened to be walking by us and saw that I was freaking out.  He immediately went in and made it so we were able to get a room to ourselves.  I am so grateful to that man for doing that.  It was still hard to be in there but I was able to relax a little bit after awhile.  Skyler only got platelets today instead of chemo because his counts are too low so it only took a couple hours.  I was grateful for that too.  We are going to have to do this three times a week from now on because he still needs platelets that often.  This experience was alot harder for me than I had imagined.  I have no idea how I am going to be able to do this three times a week!  I'm hoping that it will get easier with time.  At least we can come home after and thats all that matters. 

I forgot to take my camera with me to clinic so I dont have any pictures of that, but here is a picture of Sky playing our version of bowling.


Marie said...

Crystal--I'm so sorry that clinic ended up being so frustrating. Thank goodness they finally got you a room so Skyler could be more protected.

Rachel & I went to clinic on Tuesday and they were jam packed that day too. We sat down and waited, then her nurse told us that she should never sit out there (being post bone marrow transplant), but we should just ask for a room. But it sounds like sometimes they don't have any rooms available!

He looks so happy and healthy in the pictures you posted! Hopefully his platelets can start hanging around a bit more. Hang in there! You are doing a fabulous job!

August said...

Bless your heart! You're not a freak, you're human and you're scared, who wouldn't be! Mama's take care of their babies and I admire you for making the tough decisions of demanding what you think he needs! There is a huge difference to the picture of Skylar at home and his last few days in the hospital, he looks completely different, much healthier. I'm really happy for you guys!

Amanda said...

I heard clinic was packed yesterday. I am so sorry you had to have that be your 1st experience. Thank Heaven for who ever Your doc was that got the room, I would have been bawling sitting out in the hall.
Also, I NEVER park my own car. I use to but there were never spots. Use the valet, it's what they're there for. If you're worried about germs you can wipe for wheel down after with clorox wipes.

I LOVE Skyler's picture. His smile is priceless.

Anonymous said...

So sorry the day was rough! I don't know if it is possible for you guys, but we always try and get the first appointment of the day. No one is there at 8 in the morning. And they can get you right back to a room. Plus, everything has been cleaned! It does get busier, and sometimes quickly, so that by the time you leave it is a zoo. But at least when you first get there it isn't horrible. There have been times that we couldn't get the early appointments and I've been shocked at how crazy it gets. Try for first thing in the morning. Good luck! And boy is he adorable!

lea said...

Im so sorry Crystal...I really hoped it wouldve been less stressful. It is SO hard when the clinic is full of people and your babys counts are low. I cant imagine how freaked out you were. It does get easier, and if you can swing it, the first appt of the day is the way to go to avoid people! Glad your doc found you and helped out!
More prayers coming your way!

Anonymous said...

skyler's sweet momma,,, you are doing a wonderful job, you are not a "freak" you are his momma, who loves him more than life. I wish that I could help you in some way and I pray that this "routine" will become atleast tolerable.

You and your baby boy have more courage than anyone I have ever met.

zach's mom

Sue Mullen said...

Crystal, my daughter Kailey was diagnosed with ALL in May of 2009. I have been following Skyler's journey and I think you are an AMAZING mom! God gave Skyler to you because he knew YOU could do what is best for that precious little man!!! Please know that I think about you and Skyler and can't wait for things to smooth out for the two of you!! GOD BLESS you and Skyler! Here is Kailey's CB page if you would like to learn more about her:

Sue Mullen

Dani said...

I am soooo sorry about clinic. I had called early that morning because I was waiting for Chase's counts to come through and when scott told me that it may be a while because the were super busy I immediately thought of you and Sky. I knew how I would have felt if I would have walked into a packed clinic. To tell you the truth it has never been packed when we have been there so I panicked for you. I got off of the phone and sent a text to Amanda telling her and asking if there was anyway to get a hold of you and tell you to stay in your car because there was no way that you would go right into a room. Obviously we never got a hold of you, but I so wanted to. I get anxiety when there is just one other person in the waiting room and by the sound of scotts voice it was "swamped". But as you know and have experienced after going back friday it is not always like that. Especially on Friday because they are not technically open on friday and we beg to go that day because it works best for us coming from St. George. Anyway, I hope you have better clinic days from here on out. If you have to be there three days a week, they need to be certain that they are taking good care of you guys.
I love all the pictures of you guys at home. I am so glad he is doing so good. You are one AMAZING mom and NURSE!!!