Tuesday, November 30, 2010

Surgery update:

Sky just came back from surgery.  It went ok.  When they opened him up the spleen was attached to his abdomen so it was harder than they thought to get it out.  He bled ALOT!!  His blood pressure dropped but they were able to transfuse him with four units of blood pretty fast so they were able to stabilize him ok.  They said the spleen was huge and very abnormal and it looked engulfed with fungus.  He is back in his room right now.  He was awake when they brought him back and looked like he was in alot of pain so they gave him some more sedation.  He is sleeping right now.  He still has a drain in his belly to drain extra blood, and also an IV that goes right into his belly that drips narcotics into him to help with pain from the inside.  

Thank you so much for all your prayers!!!!  It went alot better than I thought, and hopefully he can start to get better from here on out.

Monday, November 29, 2010

Yesterday Skyler went in for an MRI to check his belly and also to check and see if the bone underneath his pressure sore was infected.  We were told that the bone shows no sign of infection (thank goodness) but it did show numerous little abscess covering his liver, spleen, and kidneys.  They are too many and they are too little to drain, which would be the normal way to treat abscesses, so they are starting him on a new antifungal.  They say these abscesses are treatable but the treatment is MUCH longer.  They also may have to start him back on an antifungal he was taking that was really hard on the liver and kidneys.  The decision they are waying now is whether to keep him on this antifungal and kill his kidneys for good or to get rid of this infection. (the answer is obvious but devastating) His kidneys will most likely be shot...huge bummer!

So we made a decision on the spleen, it will be taken out tomorrow morning.  They decided to do it right now because he will not get any better with it in, his counts are ok right now, he is already intubated, and they have to start chemo again this week so his cancer doesnt come back and the spleen has to be removed first or the chemo wont really work.  This is such a huge deal for Skyler.  They are worried that his blood pressure with drop and other life threatening things may occur because of how sick he is right now, but they just have to take the risk right now because they have to.  I am so scared!!!!  And I thought waiting for him to come out of Saturdays surgery was hard!  They may just have to hook me up to Sky's Fentanyl drip tomorrow.

Right now Skyler is hanging in there.  His bilirubin is up right now so his skin and eyes are yellow, but other than that there hasnt been any big changes today.  The eye doctor came and looked at his eyes to see if the fungus had made its way up there and it hasnt, so thats really good news. 

I have wanting to try and cheer Skyler up so we put up a Christmas tree and hung snowflakes.  We are very festive in here.  My mom came up with the idea of a superhero tree, so she got lots of little superhero guys and we put them on the tree.  I think its super cute!  I also cut up a million snowflakes and hung them up.  Here is a picture of some but it doesnt do it justice as to how many I actually put up.  I didnt want to celebrate Thanksgiving, but Christmas is for Skyler so Im going to make sure he has a good one!

Superman is our star this year

Saturday, November 27, 2010

Wow, today has been a trial for me in itself.  Skyler went down to surgery early this morning.  Those two hours of waiting were pure heck (I dont think I should say the real word, but you all know what I mean) and seeing him for the first time being wheeled back in the room put me into shock and I totally broke down right there in the hall.  He just looked so different. He was super puffy, his stomach was a really weird shape from laying in different positions on the table, and being intubated just makes him look different. 

The surgery went ok.  They replaced his dialysis catheter and put a new central line in behind his knee.  They took a sample of the little ball from his leg to biopsy, did a bone marrow aspirate,  and put an arterial line in (a line that goes into an artery that reads his blood pressure constantly)   He came back to the PICU to recover and then was supposed to go down and get an MRI but he was too unstable.  It was really hard to ventilate him down in the operating room and he was on pretty high settings on the vent when he came back, so they decided to give him a day to recover and see how he is doing tomorrow.  His blood pressure also dropped pretty low so they had to pump him full of fluid (I know that doesnt make sense when they are trying to get fluid off of him, but he didnt have enough fluid in the vessels it had leaked into his tissues) and started him on a blood pressure medication to bring his pressures up.  After a couple of hours they were able to stabilized his blood pressure and started him on continuous dialysis and are slowly starting to take the fluid off.  He again is surrounded by machines that are helping keep him alive.  I hate that!  Up on the floor he was down to one pump on his IV pole and now it is covered again.  Hopefully it doesnt take too long before we can start to eliminate some of these.
The last time he was intubated they had him completely sedated, this time he is just on a little Fentanyl drip and he is still pretty with it.  He opens his eyes sometimes when I talk to him and nods or shakes his head when I ask him questions.  He even mouthed that he loved me.  Even through all this crap that he is going through, he lets me know that he loves me.  Wow, I just cant put into words how much I love this boy.  He is amazing in every way possible and I am SO lucky to be able to call him mine!

This is what Skyler looked like a little over a week ago.....

This is Skyler today....

Friday, November 26, 2010

Plan for tomorrow:

Skyler hasn't been able to get the fluid off of his lungs he needs to to be able to breathe ok, he is needing more support on the bi-pap today so they are going to take him down to the operating room tomorrow to place another dialysis catheter.  He will need to be back on dialysis for awhile again to remove this fluid.  They will send him back to the PICU intubated because first of all he needs it, and they want to be able to do some testing on him while he is sedated and on the ventilator.  They are going to do another MRI of his pelvic region and see if the bone underneath his wound is infected, also do another full body CT scan, and do some biopsies of a couple bumps be now has on his legs.  They are little hard bumps underneath his skin and are really tender to him, so they want to know if they are little balls of fungus.  They will keep him intubated for at least a couple of days, just depending on how he looks when he comes back and how sick he is. 

So here we go again, we are officially back at the beginning of this horrific journey.  I just cant believe he is going to go from talking and dancing again to being sedated and having a machine breathe for him.  Ugh!  I feel like I am suffocating, and seeing him like this again literally hurts me. 

Thursday, November 25, 2010


I am so thankful this year for:

My wonderful family who is ALWAYS there for me
Great friends and people I havent even met yet who have been so willing to help me and Sky
The staff here at PCMC who have been so good to us
And that I get to spend this day with my son, for that I am TRULY GRATEFUL!!!!

Tuesday, November 23, 2010

Well it looks like Skyler has a new fungal infection in his lungs and that is what has been causing his respiratory distress instead of just being fluid overloaded.  He still has a lot of fluid on him but the main problem now is a new fungus growing in his lungs.  This means that his central line along with his dialysis catheter have to come out.  He is scheduled to go down to the operating room to get the catheter out in an hour.  Since he wont have his central lines they will have to start about three new IV's in his hands and feet and instead of drawing from his lines everyday, it means pokes everyday.  He is still on the bi-pap, but if they have to increase the settings they will think about intubation, which means being sedated again. (And just when he was back to his normal self again dang it!)
They need to do another CT scan within a couple of days or so to see if this infection is anywhere else.  They are going to have to use contrast again which is another hit for his kidneys, but I talked to the renal doc today and she said that she is willing to let his kidneys go completely if that means saving his life from this infection.  They have dialysis he can be on for the rest of his life or even a kidney transplant later on if thats what we have to resort to.
As far as chemo goes, they are going to be giving him a maintenance dose of each week now instead of starting him back on the regular course.  So once again his cancer is on the back burner.  The surgeons came and consulted about taking his spleen out and they said he is just too sick right now to do it.  If it becomes an emergency situation then they are willing to take that risk, but for now that will also have to wait.
So basically we are back where we were in the beginning.  He is getting really sick again.  My day has consisted of crying and more crying.  Lately I have so happy and smiling and laughing, but today if feels like I have been kicked in the gut over and over again.  This just cant be happening again. It looks like this little stay in the PICU has turned into another long horrible stay.  Please keep Sky in your prayers tonight, I am one scared momma right now.

Monday, November 22, 2010

Skyler's respiratory status just kept getting worse throughout the night and into the morning.  It got to the point where I made the doctors come in and do something before they even started their rounds. (I know Im getting kinda pushy around here, but I know what can happen if I dont make things happen)  They ended up putting the bi-pap mask back on him to help him breathe.  He actually is tolerating it well, other than the fact that he cant eat or drink, because he can actually breathe better now.  He even told me he couldnt breathe before they put the mask on him, and you know its bad when a four year old tells you he cant breathe.  They know that mostly it is due to being to fluid overloaded and he hasnt been able to pee it off so the fluid went to his lungs, but it also could be due to some kind of infection or he could be bleeding into his lungs.  They have done some tests and we will get the results back in the morning.  Right now they are giving him diuretics to hopefully get the fluid off of his lungs.  If that doesnt work he will be have to be put back on dialysis or intubated.  I mean, really?  After he has been doing so well?  Getting that tube out the first time was a miracle in itself, so Im terrified of them having to put it back in.  Hopefully his respiratory issues are just due to fluid and he can pee it out with all these diuretics he is on.
So about the blood in his stool, they just arent sure what it is from.  It isnt a bright red color, so they are just going to keep an eye on it.  They have done a couple tummy x-rays and the only thing it showed was that his bowels have slowed down and arent working too great, so they stopped his feeds and he is now on TPN which will be his nutrition right now.  It's a liquid that looks like Gatorade and it goes into his central line. 

Sunday, November 21, 2010

We are back down in the PICU tonight.  Man, just when I was getting used to the floor too.  But that's just how things go right?  Whenever it seems like Skyler is doing better, we get slammed with something else.  Over the past couple of days he has just been getting more puffy and today his respiratory status just went downhill.  Turning him on his side earlier tonight made him drop his O2 into the 60's.  Earlier in the week he was only on half a liter of oxygen and tonight we had to go up to a liter and a half.  Not good :( 
We have also been finding blood in his stool today.  They arent exactly sure what is causing it yet, so basically we are just down in the PICU because they need to keep a closer eye on him and if things do go south we are here.
Earlier in the day the Oncologists were thinking about scheduling him for surgery on Wednesday to take his spleen out, but now Im not sure what the plan is.  The one thing that I have learned from being here so long is that we have to take it one day at a time, and sometimes one hour at a time because things are just so unpredictable.

Saturday, November 20, 2010

I just want to say thank you to everyone who came out and supported Skyler tonight at the Songs for Skyler Concert.  It turned out amazing!  I am overwhelmed with gratitude at how many people took the time out of their day to show their support, and to those who put their hard work, effort and talents into making this a success.  This has helped open my eyes to how many truly good people there are in this world.  You have all helped me want to be a better person.  I wish Skyler could have been there tonight to see everyone who came out to support him and know that he is so loved.  There has been a little weight lifted off my shoulders today knowing that there are so many people who are behind us and rooting for my little guy.  There really are no words to express how grateful I am.  THANK YOU!!!

Here are just a few pics from tonight.....

                                             Ties for Humanity came.  I love this organization!

                                                                 Sportin my cool tie

The girls from crochet for kids cancer were there, they have such cute stuff

Me and Kaidan, a cancer survivor....this girl is so cute!

My brother and cousin wearing their Super Skyler shirts
Ok I know I have a weirdo neck in this picture (lets just not look at it) but I had to show you the cute poster people signed for Sky

They have such good food at Blue Lemon, I highly suggest eating there!

The wonderful people who put this whole thing together...thank you guys so much

My cute sisters and their Super Skyler shirts

And here are pics of some of the great talent that was there tonight
(I know I didnt get everyone but I was using two cameras and left the other one with my sister)


Friday, November 19, 2010


I am breaking in to Crystals Blog to let all of you know about an event for Skyler tomorrow night (Saturday) from 5:30pm till 10:00pm at Blue Lemon in Salt Lake City (55 W. South Temple).  
Admission is free, there will be great music from local musicians who are all donating their talents in support of Skyler.  
Blue Lemon has not only donated the venue, but will also be matching, dollar for dollar, all donations received that night.  You are not required to purchase food from Blue Lemon while you are there but it is tasty, especially their desserts! :)  
We have also received some fun items that we will be raffling off through out the night from: Glassnote Records, Unity Salon, Jeff Metler Law, Integrated Wellness, Mulligans, and Utah Woolen Mills. 
We are very excited for this event and hope to see all of you there! Even if you can not donate at this time, just come for the music, the food, and the love.

City Creek has donated FREE parking for the night as well.  You can enter City Creek Parking heading North on West Temple or heading East on South Temple (right before you come to Blue Lemon).  Make sure and get a validation from the donation table.

If you have any questions please contact Jen Beckstrand at jen@bluelemon.com

Thursday, November 18, 2010

Skyler's fevers have not gone anywhere.  He will spike a fever at least once a day, but usually twice a day.  Yesterday he actually dropped down to 33 degrees C which equals 92 degrees F.  That's so low that we had a room full of people in here looking at him.  He was still perfusing good though, so we just covered him with the warm blankets they have here.  It took him two hours to get up to 35 degrees which is still low.  We were just all so confused because he is usually always so hot.  It isn't unusual for him to get up to 40 degrees which is about 104 degrees F.  The doc was saying that sometimes in babies their temps will drop low and that is their form of a temp, so that's maybe what was going on with Sky.  It's still very weird though because it is so different for him.
They decided they wanted to do another CT scan to check for any new infections  he may have that would explain these fevers.  They also decided that this time he would need contrast for the scan.  It is a dye that they put in his body so they can see more on the scan.  We havent been using it though because it is hard on kidneys and the last thing he needs is for his kidneys to take another hit.  But after talking to the kidney doc he said to go ahead and use it this time because the benefit outweighs the risk at this point.  They needed to be able to see if they were missing anything.  So we did that yesterday and to our great surprise the scan looked GOOD.  He has no new infections and everything that showed up on his last scan has improved.  This is pretty much a miracle!  I was beyond happy.  We still dont have anything to explain his fevers, but this is still great news.  Another little miracle was that he has been able to pee the contrast out without any problems, and his labs still look great.  So this means that his once very confused kidneys have become smart again.  (As Skyler would say "SAWEET")
Today we found out that we may be looking at taking out his spleen next week.  We have another bone marrow aspiration scheduled for monday.  Then depending on how that looks and how his counts are looking they will decide whether or not to take it out that week.  Talk about scary!  I new this was bound to happen but I was thinking that it would be at least another month or so to let his body recover more.  But I guess that having no spleen is more important right now in his recovery instead of having a spleen that is useless and causing more problems.  Still scary though to think that they are going to be taking out one of Skyler's organs that helps fight infections. 
Today we had a visitor named Cami.  She is one of Skyler's little cancer buddies.  After she was done with clinic, she and her sweet mom came up to see Sky.  Here is a picture of the two them.  I have to say, she is one of the cutest girls ever!  She makes me smile every time I see her.  Thank you Chelsea and Cami for making our day!

Wednesday, November 17, 2010

For the past couple of nights my favorite time has been about eleven until about midnight.  During this hour Skyler has been really awake and wanting to play.  Because it is so late at night no one comes in and bothers him, so that leaves time for us to play together and Skyler to be himself without worrying if he is going to be poked or prodded.  It has been so nice to see him be himself again.  His little personality is just shining through and its amazing to see.  Its during this time where I am truly happy and so grateful that I get to be this little boy's mother.

Some funny comments he made today are:

I was giving him a drink and thought I would be extra generous and give him an extra big drink.  After he was done he gave me this cute smile and said "Thumbs up woman!"  Haha I think I about peed my pants from laughing so hard.
Then he was kind of feeling around at his belly and stopped at his belly button and said with a confused look on his face "Mom my belly button is gone, it just disappeared!"  (His belly is still really big so just like a pregnant person's belly button, his has stretched and has become an outty and it feels different to him)  It was really cute because he didnt seem too bothered by it, but was just confused as to where it went.
Then we were playing catch with a big beach ball and the nurse had to come give him his med through his feeding tube and suddenly he stopped mid catch and looked at her and said " And what are you doing"  she said "Just giving you your Ativan through your feeding tube" and he said with the funniest look on his face  "Oh thats just weird!"

I just wanted to post some pics of Sky before he got sick because I have a lot of him very sick, but I want you to see the Skyler that isnt sick too.

Monday, November 15, 2010

The most recent news with Skyler is that he is going to have to go the operating room to get his wound scraped out and closed.  The wound guy came in to look at it today and saw that there is another layer of dead tissue that is on the top of the wound now.  It's all yellow and gross looking and he said he wanted it to be a pink color.  He said he could scrape out at the bed side again, but thinks that it probably goes down to the bone and would rather do it in the OR.  The problem about taking him into surgery right now is that his platelets are too low.  They were at 7 today.  They could just give him a couple units of platelets before he went in and that would make it so he wouldnt bleed so much during the surgery, but the problem is if his platelets keep dropping low everyday then after they closed it it would bleed underneath the skin and make a pocket of blood that would be a problem.  And the platelet problem is not going to be fixed until they can take his spleen out because that is what is eating up all his platelets.   And they cant take his spleen out until he can recover more and is free of these fevers.  But he has had these fevers the WHOLE three months we have been here and its still a mystery as to why he still has them.  So right now I dont think there is a plan on how to handle this situation.  They put him on another antibiotic and will see if that helps his fevers at all, which I'm sure wont because he has been on this one before, but I pray that it will.  Its just a big frustrating cycle right now. 
They are starting Skyler on the regular road map for his chemo now, but they have to wait until his counts come up to 750 before they can give it to him.  Today he is at 100, but they are giving him shots everyday to make his counts come up faster.  Im so glad that he is able be on the regular schedule for chemo but it scares me whenever they do give it to him because thats what has caused all this other crap for him.  I still have a love hate relationship with this poison!
One of the good things this week though, is that Skyler has been getting out of bed more and is wanting to do more things now which is awesome!!  He wants to play games and color and do puzzles.  He also wants to go out into the halls which is huge for him, he cant though because his counts are too low right now, but its the thought that counts right? 
The problem Sky is facing right now though is that whenever he wants to do something fun, it seems like that is when his meds chose to start kicking in and he falls asleep pretty fast.  He tries so hard to stay awake so he can play more, but the meds usually end up winning this battle.

                                                     This is Skyler doing a puzzle........

This is Skyler when his drugs are starting to kick in....

This is Skyler after the drugs have kicked in....

Poor little guy, but its kinda cute though!

Sunday, November 14, 2010

I dont have really anything too exciting to post about today, and even if there was I'm just too tired to even begin to write something that would make sense.  I do however want to let everyone know that we are back up on the 4th floor and doing ok.  Skyler has made a new friend and his name is Teddy.  He wont sleep without him and he has to have him there giving him a big hug whenever the nurses or doctors touch him, so here is a picture of the two together.....

Im so glad he now has some other form of comfort to help him get through this difficult time.
Thanks Teddy!

Friday, November 12, 2010

So I haven't really told you guys about Skyler's pressure sore yet.  I have mentioned them change his wound dressing but I havent really talked about it because it hasnt been one of the bigger issues.  It has become a bigger issue now and Im pretty angry about the whole thing today so I thought I would share.  About three weeks into being at the hospital, Skyler's skin on his bum by his tailbone started turning a darker color and started to get some breakdown.  Ever since then the spot has kept getting worse and hasnt been able to heal because of his counts being so low.  For the past five weeks or so they have had a wound nurse come in and change the dressing on it but it just hasnt gotten any better so she suggested getting plastic surgery involved.  They came down and looked at it yesterday and decided they need to scrape out the dead skin inside and see if that would make the wound heal a little faster.  If not, then they will have to take him to the OR and surgically clean it and close it.  So yesterday they scraped it out.  It was a little deeper than they thought and it was bleeding like crazy!  They had to hold pressure on it for what seemed like forever and then had to pump him full of this......


and this........


 After two units of platelets and some blood be finally stopped bleeding.  Since then he has been in EXTREME pain and can only be on either of his sides in bed, which is not ideal for the healing of his lungs.  Im really angry about the whole thing today.  I havent been too concerned or angry in the past because this just seemed like the least of his problems, but now it is interfering with his progress in getting better and Im MAD!  This was caused from not being turned while in bed for three weeks in a row.  I know Im a CNA and I have done this stuff for a job and I know that people who lay in bed need to be turned, but I was just so upset and worried and this dang cancer that it didnt even cross my mind.  It should have crossed the mind of nurses and techs here though because that is part of their job.  Ugh!  So now Skyler is in so much pain and his lungs are sounding more junky from not being able to sit upright and get up in the chair.  Im sorry for complaining but Im just really irritated and I hate having to see him in so much pain when this could have been prevented. 
 Im going to show you a pic of it, and you will probably think Im crazy for showing a picture of part of my son's bum but I just want people to be aware of this kind of stuff.

Thursday, November 11, 2010

Alrighty, here is what is has been going on the past couple of days. Skyler was scheduled for an EEG and MRI yesterday. They did the EEG and then took him down for the MRI. The plan was to do a conscious sedation where they give him Versed and Ketamine to relax and put him in lala land so he would be out of it and not move for the scan. Plus that room is super scary, no child should have to be awake for that. Anyway so I guess my son has built up a huge tolerance to these meds (I wonder why)  because they had to give him three doses of the Ketamine and that still didn’t sedate him. He woke up a couple minutes later in the scanner screaming for mommy and trying to pry the thing away from his face. I was in the control room watching him on a little camera and basically screamed for them to take him out.(yup they will never let me watch again Im sure) So basically this attempt at the MRI failed. Plan B was to schedule him today for another MRI but with general anesthesia. So today we went down for that and found out that they had to intubate him for it so they could protect his airway while he was in the scanner because the anesthesiologist couldn’t be in the room with him. Needless to say I was not fond of the idea and had a break down in the hall. After 7 weeks of being intubated, the last thing I want was for them to jab another tube down his throat. Everything went really well though and they had him extubated before I got back there to see him.
The results of the MRI showed that he has some abnormalities of the white matter on his brain. Most likely from the Methotrexate (chemo) they have to give him in his spine. Its now scar tissue that will always be there. They say that they have seen this before with this type of chemo. Some kids have permanent brain damage from it and others recover when their bodies recover. We just wont know for sure how this will effect Skyler until if becomes an issue. The next step is to talk to our Oncologist about whether to continue with this type of chemo or not. Im pretty sure that we will continue with it though because the most important thing right now is to treat his cancer right so it doesn’t come back. We can live with a little brain damage, but having the cancer come back can kill him so its kind of a no brainer to me. Good news though is that they didn’t see any clots or anything bad that would cause seizures. Thank goodness!! Im so glad we don’t have to do a surgery to place a shunt or anything like that.
The results of the EEG showed no seizure activity either but it showed that his brain is a lot slower now. He has been so sick for so long that it doesn’t surprise them that his brain is slower now. Just like with the other test he may be able to recover completely from this but he also may never recover, only time will tell at this point. Like they told me before, Im going to shove this to the back of my mind and focus on the good that came out of this. He is awake. He is talking. He is moving again and making us laugh. I know things could have been a lot worse so I am so grateful for where we are at now.
The highlight of my day today was getting a visit from another little cancer buddie also named Skyler and his mom.  He also had a rough go of it, but is doing great now.  It was amazing to see that!  Thank you for coming to see us, it ment a lot to me.

This is the teddy bear that Skyler and his mom gave to Sky.  He loved it and fell asleep with it...super cute!

This is when we were about to transport him down for the MRI.  He had to take his balloon with him that his friend Cami gave him.  We wouldnt let go of it.  Here he is in the halls, balloon and all.

Tuesday, November 9, 2010

Today Skyler is having two tests done to see if we can figure out what is going on with him.  The first is an EEG where they attach electrodes to his head and look at his brain waves to see if there is any seizure activity going on, and an MRI of his brain.  Since coming down here to the ICU his mental status has improved, he is not nearly as sleepy, and when he is awake he is his normal self...which is great.  He is throwing up alot more and alot more frequent though.  They are going to have the GI docs come look at him either today or tomorrow also to see if we can find out whats causing him to throw up so much.  I know chemo can make you throw up but this just seems different to me.  I will let you know the results of the tests tomorrow and let you know what these knew docs come up with.

This is Skyler getting the EEG test done.  He did great getting those wires attached to his head.  These are the times I am grateful for his bald head because that would have hurt taking all those off with a head full of hair...ouch!

Monday, November 8, 2010

I am writing to you from the PICU.  Yes we are down here again, and Im sad to say that this feels more like home than ICS.  Skyler has been throwing up for a couple of weeks now and lately it has been getting worse.  The stuff he throws up is super thick and its hard for him to get it up, so when he is done he is left sounding really junky and we have had to resort to suctioning him to help grab the mucus from the back of his throat.  Anyway, today Skyler seemed very tired and slept all day.  We didnt have a good night before that so I slept until about noon (my dad came and watched him while I did....thanks dad)  When I woke up I got concerned that he hadnt been awake at all yet.  The nurses and even the resident doc said he was just tired from having a hard night and not to worry.  I knew he had a hard night, but most of his nights are hard and he doesnt get the best of sleep at night and he still has been awake and active during the days so I was still concerned.  As the day went on he still didnt wake up.  I kept having the resident doc come in and talk to me because I knew something wasnt right.  Again she just told me that he was tired.  I didnt buy it, my gut instinct told me other wise.  I knew there was something going on with him but I didnt know what.  Then about three in the morning (he still hasnt woken up) he was sounding junky so I decided to suction him myself.  I got alot of stuff out of him but I also made him barf everywhere.  This barf was a darker color and I think he aspirated a little of it so needless to say I started crying because I thought I hurt my child, but come to think of it now I am so grateful I did.  I had the nurse come into help me clean him up and when she saw that the barf was a different color she called the doctor in again to look at him.  This time she was actually concerned and called in another doctor also to asses him.  He just kept getting sleepier and sleepier and wouldnt respond to anything.  They then had the PICU doctor come look at him.  She said she thought he was having a seizure.  She was actually the doctor that was on the night he had his other seizure and she said it looked like he was doing the same thing (minus his blood pressure dropping) so she gave him Mannetol and thats when he woke up.  They sent us down for a head CT to see if he had pressure on his brain.  The results showed the same thing as his last scan, so that's good that is hadnt gotten any worse.  But obviously he did have some pressure on his brain because the purpose of the medicine they gave him was to relieve pressure and he responded well to it.
So now we are back in the PICU and the plan for the morning is to have the neuro docs come look at him and try and figure out whats going on.  Obviously this needs to be addressed and taken care of.  I was asking the PICU fellow what she thought they might do and she said that one of the options is to put some sort of shunt in.  Ugh...that would not be good.  A shunt put in and a spleen taken out are two big surgeries that wasnt supposed to be apart of this cancer stuff.
I am just so sad that Skyler has to go through all of this crap.  A little four year old should never have to endure all that Skyler has.  It just breaks my heart seeing him so sick.  I want to be able to take away all his pain and say everything is going to be ok.  It sucks that I cant.  Why did this have to happen to him and why cant he ever catch a break?  Its just one thing after another and its killing me not being able to see the end to this.  I love you with all my heart Skyler and I am so proud of you for being so brave...you are my little hero bud!!

Sunday, November 7, 2010

I feel like I was mean in my last post so I want to let everyone know that I am very grateful that we are on this floor now.  Some of the things I am grateful for are:

FIRST:  The wonderful night shift nurse that has been wonderful with Skyler the past two nights.  She has made me feel very comfortable and she does it with a smile on her face.

SECOND:  This awesome view that we have from our room.  At night its all lit up and pretty.  I get to see the world again,  Even if Im not out there at least I can see it.
THIRD:  The peace and quiet we have that lets Skyler rest better. 

AND LAST BUT NOT LEAST:  Skyler is finally well enough to be up here!  I never thought this day would come, but it did, and I am beyond grateful for it.

This is a before picture from down in the PICU

And this is Skyler now, finally well enough to be here!

It took some getting used to, but this is a change that is definitely worth it and I am so grateful that we are here and that Skyler is starting to get better.  I may get frustrated sometimes but I am so grateful for the staff that is taking care of my precious boy.  Thank you!

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.