SHORT UPDATE:  Skyler had a seizure in the middle of the night last night.  They hurried him down for a CT scan of his brain and did a spinal tap.  They both didn't show anything that would explain the seizure though.  I'll post again soon and explain more later, I'm just too tired today. 

This week has been very eventful with some ups and downs...mostly ups though.  I'll start with the downer first.  That night after they took Skyler's breathing tube out they had to put him back on the BI-PAP mask because he was working a little bit harder to breath.  He also kept throwing up.  It would go into the mask and fill it up, we think he may have aspirated a little too.  They couldn't figure out what was causing him to throw up so much so they took him down to do a CT of his brain and sinuses because they thought maybe there could be some pressure building up on his brain causing him to throw up.  The scan came back and his sinuses are clear (finally...yay this is a good thing) but it also showed that his brain had some atrophy.  So basically his brain matter is shrinking and being replaced by fluid.  The doctor told me that the last scan he had a month ago showed a little of this but this scan showed it had progressed a lot more.  I looked at the scan and couldn't believe it, Sky's brain had shrunk ALOT!  The attending told me that he had never seen this progress this fast before.  He told me that Skyler could have brain damage and that he may never regain some of the skills he had before and he may have developmental problems from here on out.  Hearing this was so hard.  Now that his body is starting to get a little better its hard to know that his brain may never be the same.

Later that afternoon the PICU attending had the Oncologist come look at he scan and see what he had to say.  To my great relief he said that he sees this with chemo kids alot.  He says he normally doesn't see it as significant as a loss as Skyler's, but then again most of the chemo kids don't get brain scans.  I was told to put this to the back of my mind and deal with it when it becomes and issue because there is no way to tell how this will affect him right now.  So that's what I plan to do.

Now on to the good news.  Skyler spoke for the first time!  I wasn't there for it because I was down eating, but my dad told me that he said as clear as day "I want my mommy"  How precious is that?  Then later that night he was trying to say something so I took off his mask and he started crying and said "I just want to go home mom"  That was so hard to hear.  Of course I started bawling and had to explain again why we are here and that I haven't left him and I wont leave him until we can go home together.  Then he told me he loved me.  I started crying again, but these were happy tears.  I have been waiting to here those words for so long!  The most amazing thing about this is that I got to hear his voice again.  My little Skyler's voice that I have missed sooo much.  You never know how much you truly love something until it is taken away.  But when you have it back again its such a miracle and I never thought I could be this happy.

Skyler also peed for the first time in two months!!  Yay!  He told me he had to go so we hurried and got him up and he tried going in the urinal.  He tried so hard to get it out but couldn't so they had to straight cath him to get it out, but he made urine and that's all that matters.  He is now going to be on dialysis for just eight hours a day to see if we can get them working more.

Skyler was also to sit up in a chair for the first time.  He did so good and I bet it felt so good for him to get out of that hospital bed!  All his docs and nurses had to come look at him.  They all looked pretty surprised and kept saying how good he looked.  And today I was able to hold him again for the first time in eight weeks.  Man that felt good.  I sat in the chair while they lifted him off the bed and handed him to me.  Honestly it felt like I had just given birth and I was holding him for the first time again.  I couldn't stop smiling.  I got to hear his voice and hold him.  I don't think I could be happier right now.  Miracles can happen :)

Also he was able to drink today for the first time in about nine weeks.  Even before he was intubated all he wanted was a little drink and we couldn't give it to him.  So to be able to finally give him a drink of water was awesome to say the least!  He also had have of a Popsicle.  Way to go Sky! 

Oh he is also just on a nasal cannula instead of the BI-PAP mask which is wonderful for him.  So to sum up, Skyler had a good week and I pray that he will continue to go down this rode.  Keep up the good work bug!

                                         This is a pic of me and Sky right after he peed...

  

 Skyler taking a sip for the first time.

Skyler sitting up in his chair.

  

Grandma and Grandpa wearing there Super Skyler shirts.  I'm not quite sure whats on my Dads shirt, lets just pretend that's not there :)

HAPPY HALLOWEEN!                            The look says it all...

                        (The tape on his face is from the bi-pap mask not part of the costume)

They had Skyler on a spontaneous breathing setting all day today and he did amazing.  So when the respiratory therapist came in to suction him he said "Let's just extubate him"  At first I thought he was just joking but when the NP and Doc came in and said "Lets do it"  I started freaking out.  It was too good to be true, but ten min later they pulled the tube!!!  This is huge!  It all happened so fast.  I thought it would take the whole team sitting down and really talkin it through first before it would happen, but it was just so fast.  So after five weeks he is finally free of a breathing tube.  I am so happy!  Here are some pics of them taking out the tube.  He also wanted to sit up so they sat him up and he sat there by himself without any help.  It was amazing.

Yesterday I wasn't feeling great.  My stomach was sick and I had a headache.  I was afraid of giving whatever I had to Skyler so my wonderful mother came and stayed with Sky while I spent all day in one of the sleep rooms here.  That day wasn't the best for Sky either because he kept throwing up.  Throwing up is not a good thing when you are intubated because you have a risk of aspirating it.  Scary and not fun stuff.  The nurse was saying it could have been with drawls because they tried weening down on his meds again, but I think I may have gotten him sick and I feel SO HORRIBLE about it.  Poor baby!  Today I am feeling much better so I decided I come back in (with a mask though) and I walked into this....

Skyler was wide awake and trying to sit up, so the nurse lifted him into the sitting position.  Amazing!  Its been a long time since I have seen him do that.  He was even able to keep his head up mostly by himself.

 When they layed him back down he turned himself on his side and grabbed onto the railing.  He was scooting himself over and dangling his feet off the bed.  He was trying so hard to get out of that bed.  It made me laugh and smile and cry at the same time (I tried hiding my tears though so he wouldn't think I was sad)  And then at one point when we got him back in the bed, he scooted his head to one side and had both legs hanging off the bed.  He would have kept going right off too if we didn't grab him and put him back in the middle of the bed.  The morphine kicking in too seemed to help the escape as well.

 Since Skyler has been on dialysis for so long his kidneys have kinda just been "chillin"  The machine does all the work because Skyler's have been so sick.  But today they decided to try and challenge his kidneys and see if they will make urine like they are supposed to.  They will be taking him off dialysis for about four or five hours and then put him back on for about eighteen hours.  Hopefully this will allow the kidneys to try and work on their own.  If Skyler can get off dialysis for good or at least get off the continuous dialysis it would be great for him, so lets cross our fingers for some PEE!!! 

 

 

Also the family of a little girl that's in the PICU with us gave this to Skyler.  Its a superman that you hang from the ceiling and it flys around in circles.  Its so cool and Skyler loves it!  They were hanging it when I walked in and he was watching with wide eyes.  It was so sweet of that family to think of Sky when they are also going through such a rough time.  I am so grateful, thank you!!!

Skyler I love you with all my heart and I am SO proud of you and admire your strength.  You are amazing and I am so lucky to have the honor of being your mother!

 

I'm sorry my last post was such a downer, I'll be more positive today I promise.  Skyler had a lumbar puncture the other day so they could put chemo into his spine.  Usually he would have a bone marrow aspirate too, but they said they had no reason to think his cancer has come back so they didn't do it this time. Yay!  On his recent chest x-rays they saw that he had alot of fluid around his lungs, which could have had something to do with his oxygen dropping, so they decided to place a chest tube so they could drain the fluid.  They also replaced his dialysis catheter too at the same time because that has been giving them problems.  They placed the catheter coming out of his chest this time instead of his neck so its MUCH more comfortable for him.  And also since they placed his chest tube his heart rate has come down and his oxygen level is so much better.  They were even able to come down on his vent settings again and he is tolerating it great!  They also were able to get his medications under control so he is much more comfortable.  Thank goodness!  It had gotten to the point where they had to put restraints on him because he was trying to pull his breathing tube out. (Not good)  But today he looks better and seems calmer.  So momma is calmer too :)

This is Sky getting a bath.  He usually shakes and shakes while he gets his baths so today they put him under heat lamps which helped a ton.
.

I took this one a couple days ago and just thought it was funny because he was so uncomfortable and couldn't figure out a place to put his arm that felt ok and this was where he chose to put it.  He kept it resting on his head like that for so long.  It was pretty cute!

A couple days ago one of Skyler's cancer buddies came and gave him this little book.  She made it just for him.  It says Cami and Skyler's perfect day, she drew things that they would do on a perfect day.  So cute!  Thank you Cami!!

Today I received tons of cards in the mail for Skyler from all over the country, even Canada and Australia.  It was awesome reading all these sweet cards for my little boy from people that haven't even met him.  There are so many good people in the world.  Thank you everyone who sent a card.  Skyler LOVES cards and I cant wait until he wakes up so he can see these!!!

Skyler opened his eyes today and watched Scooby-Do!!!  Amazing!!  Look at those eyes, I LOVE you Skyler and I LOVE seeing those big beautiful eyes!

Ugh!  Today was all kinds of awful.  Skyler is starting to have drug with drawls that have made him so sick.  He has been doing so well lately that they started weening him down on the sedation and pain medicine, but it has all of a sudden hit him hard.  He has been so agitated and just clawing all over his face because he is so itchy.  He has lots of diarrhea and also threw up tons.  Thank goodness he didn't aspirate any of it though.  I have never seen him in so much pain.

Also today every time they suction him his O2 would drop low.  On one of his spontaneous breathing treatments today (where he breathes on his own) he started panicking and his oxygen dropped into the low 70's.  The nurse even had to bag him to get his oxygen up, which has never happened before.  They did a chest x-ray to see if part of his lung collapsed but it didn't show anything new so we are kinda at a loss as to whats going on. So they upped his vent settings again and we will see what happens.

At one point today Sky was so agitated we decided to turn him on the other side and see if that helped and we found that he was laying in a pool of blood.  For some odd reason the skin on his neck tore and he started bleeding like crazy from it!  At first it looked like it was coming from his mouth so to say I freaked out is an understatement.  His platelets were low at the time so that made it bleed even more.  The nurse had to hold direct pressure on it for like twenty minutes to get it to stop bleeding.

Right now they have to change the tape that's holding his breathing tube in because it got throw up and blood on it, but since he has been so agitated and kinda pulling at the tube today they are going to paralyze him for it.  To me I think that's complete torture. I hate it!!  For all we know he could be laying there aware of whats going on and he cant move his body.  That must be awful and I cant stand it!  I'm writing this outside of his room right now because I just cant sit by and watch that happen to him.  I just want to hold him tight and tell him everything is going to be ok.  I cant do that though and honestly I dont know if everything is going to be ok.

So today was pretty awful and I'm not sure what to make of it.  Is he getting worse again?  Is this just a tiny setback?  I just wish someone could tell me exactly whats going to happen.  I swear there is no worse torture than to watch your child suffer and know that there is nothing you can do to make it better. 

Wow, today has been quite the eventful day.  Skyler was scheduled for an ultrasound of his abdomen to check and see how his spleen was doing, and he was also scheduled for a CT scan to check for any new infections or to see if the ones he has see has have spread.  I didn't sleep at all last night because I was so worried about what they would find.  To my great surprise the CT scan was clean!!  They didn't find any new infections and the ones he has are improving a little.  I almost kissed the doctor when she told me, yup even a girl doc because that's just how happy I was!!!  The ultrasound even showed that the fungal balls are improving also. 

Also since he has been doing good with going down a little on the vent settings, they thought it would be a good day to put him on a spontaneous breathing setting.  This is where he basically breathes on his own. He still gets a little support but he initiates all the breaths and it exercises his lungs.  I was so nervous about how he would respond but he did great!  He was able to stay on it for forty min. and didn't have a problem.  They are doing another one tonight, and then probably three times a day from now on.  We need to get his lungs strong enough so they can take the tube out.  His muscles are pretty weak because he hasn't had to use them for a month but we were surprised at how well he did today.

  They also had to replace his PICC line today.  This is his central access that goes straight to his heart.  His other one got clotted so they had to place a new one.  He did great with this also.  He is in some pain right now but are giving him medicine to help. I can tell when he is in pain now because he actually does a cry face.  This is sooo hard for me to see.  Before when he was more sedated he couldn't really show his pain but he can now and its horrible.

  He has been so awake today, its so strange for me to see him this awake because its been so long.  Earlier he was kinda moving around and then all of a sudden he tries to sit up!  He looked right up at me with this look of "Mom get me out of this bed" and tried lifting his head and body!  It was so crazy, I panicked and had my mom call the nurse in because i just didn't know what to do.  Its a good thing though but I have to get used to all this new stuff again.  So to sum up today though, it was crazy and wonderful!  Thank you for all your prayers.

These past couple of days we have just been kinda hangin out.  There havent been any real big changes.  Although last week they told us that one of the infections he had called CMV wasn't active so they stopped his antiviral medication, but last night they came in and told me that there was some sort of mix up in the lab and it actually is active.  That was a bummer to hear because he has lost out on days that he could have been on the medicine.  However they started it again last night and hopefully will do its job soon and get rid of this infection.  He is still having high fevers through out the day and his blood pressure will drop a couple times through out the day also, so they are going to take him in Monday for another CT of his brain, sinuses, chest and abdomen to check and see if there is anything that they are missing or if the fungus has grown in other parts.  So please pray that there isnt anything bad that shows up on that.  I just dont know how I would handle another thing thrown at us.

On the bright side though Skyler has been a little more awake and aware of things lately.  Last night and this morning he heard me talking to him so he opened his eyes wide open and looked at me while I talked!  It was amazing!  He kept them open for at least 10 seconds.  He was so hard not to burst out in tears but I didn't want him to see me do that so I kept a big smile on my face. (That was a toughy)  He also has been bringing his hands up and itching himself.  That is such a big deal for him because he is sooo weak.  Also up on the fourth floor when he first got sick his only real comfort was to put his hands up to his mouth and he hasn't been able to do that since being down here because of the bi pap he was on and then being intubated and so sedated, but he has been doing that lately.  He will just lay there with his fingers all the way in his mouth.  Its actually really cute. It has the nurses so worried that he is going to pull out his tube though.  It's funny watching them be so nervous about it when I know that that is just not going to happen.  Besides he is really good about leaving all the tubes and stuff alone if he knows that it has a purpose.  I love you sweetheart, keep up the good work!

Here are the nurses turning him to his other side.  They have to do that every two hours so he doesn't get any new bed sores.

This is a pic of the board that has info about labs and such.  I think its so cute that they did it Super Skyler style!

And here is a shirt that I have been sporting around the hospital lately.  Very stylish I must say :)

This is a pic of the nurse about to administer the medicine that they just started him back on for the CMV.  They have to gown up like they do when they give chemo.

Update

Latest Update:  Yesterday they heard a heart murmmer for the first time.  This concerned the docs because they said it could be caused by some fungus growing on his heart. Considering what happened to his daddy (a heart tumor) this scared me.  So they did an echo on his heart and found that there is not fungus growing, thank goodness, but they did see some lightening on one of the heart muscles.  They arent sure what that means but they are going to keep a close eye on it.  They say its not causing any complications right now and that they think the murmmer is caused from having such high fevers. (these fevers are going to last for at least a month and a half by the way)  So I guess thats good news for now.

Also, during the night a section on the right side of his head started swelling for some reason, so they did an ultrasound on it to see what they could find.  They were thinking it could be a collection of blood, but they couldnt really see enough to determine exactly what it is.  It has gone down today so thats a good sign.  Just in case they are going to keep his platelet count a little higher than they have been.  They do platelet transfusions everyday because his body just keeps eating them up, especially his spleen.  A normal platelet count is over 100 and his drops down to about 9 to 15 everday. 

It just seems like there is something new everyday.  He just cant catch a break.  It's such a different world down here in the ICU.  These kids arent just kinda sick, they are fighing for their lives.  I have seen several kids down here lose that fight and that just makes this all the more real and scary for me.  On the other hand, I have seen kids that have been down here longer than Skyler that have been able to get better and go to a different floor, so I have to keep thinking positive and not let my mind wonder over to the bad things.  So for some happier news: Skyler got a pretty sweet new bed last night.  He has some nasty pressure sores on his bum so they finally got a new bed that is going to help with that.  It goes right over his other mattress and blows up.  Its filled with air and the air moves around so there is never one spot that is putting pressure on his body.  Its pretty cool and I want one for myself!

Here is a pic of the staff getting it set up.  They had to hold sky up in the air so they could get it on the bed.  Its funny that so many people had to help hold up such a small little body.

I dont really have any updates on Skyler, he is about the same.  I just wanted to say thank you for all the love and support we have been given.  Words cant really express how grateful I am for everyone for being so caring and thoughtful.  It has opened my eyes to all the good that is still in this world.  I am so touched at how many people genuinely care about my little boy.  It has been so hard to see him go through this, but knowing that I'm not alone in this process and that there are people out there (even people that I dont know)that care and are rooting for him to get better brings me alot of comfort.  Thank you so much!

Skyler is doing ok today.  I have been expecting him to get worse because of these new infections, but he is hanging in there.  In fact the staff came in today and was suprised at how good he looks.  His labs are even doing ok.  Wow this little boy is tough!  Im actually kind of afraid to even tell people that he is doing ok right now incase he gets worse tomorrow (because thats how it seems to go lately) but I will take any good I can get right now.  I'm learning to celebrate the good things now, even if its just a tiny improvement, because he is working SO hard to get there.  These little things are actually a really big deal for his little body.

Ever since last night Skyler is doing a new thing with his tongue.  He opens his mouth and just sticks out his tongue and keeps it hanging out there.  The nurses are thinking its because he is more aware that there are a million tubes stuck in his mouth and gets a little nervous about it so thats his way of dealing with it.  I think its so cute because it kind of shows a little personality coming from that little sleeping body.

Also today we were able to change it up a little bit and switch rooms.  Every three days they have to take Sky off the dialysis machine to change out the circut, so it was a perfect day to switch.  Our old room just had a teeny little window with a wonderful view of a wall. Our sweet nurse was concerned that we werent getting enough natural light so he switched us over to the best room in the house.  It has alot of windows and actually a great view of the city.  It was a nice change and much needed.  (This picture isnt the best but you can see that it has more windows and its a little bigger)

This cancer journey we have been on for two months now has been quite the rollercoaster.  We have had so many ups and downs.  At the beginning of this week things were looking great.  His CT didnt show anything new, his blood gases were improving, they started weening his vent settings down and going down on his sedation so they could try and get him off the vent.  I was starting to be able to breathe again.  These past couple of days though have been rough.  His blood gases have been getting worse than we have seen them for awhile, which led to putting the vent back on a higher setting and giving him more sedation.  He has been getting high fevers, his blood pressure keeps dropping really low, and his oxygen has even dropped low a couple of times.  We were getting used to seeing his O2 levels in the high 90's and now we have seen them in the low 80's.  He has been very unstable.  Today they did an ultrasound of his belly and found that his spleen is engulfed with fungal balls.  They have been treating Skyler with antifungals for weeks now so you would think that it would have taken care of this infection.  But they say this is one of the hardest infections to treat and it can hide in various parts of the body.  They put him on another antifungal medication so we will see how he responds to it.  I am scared out of my mind right now.  The usual optomistic NP seemed really worried and kept saying this is just really hard to treat.  Im so afraid that this is going to be really bad for my little guy so any extra prayers for Skyler would be much appreciated.  He is still fighting though and one thing I know for sure is that he is one tough and stubborn little boy!  Keep up the good work sweetheart, I LOVE YOU WITH ALL MY HEART!!!!

Happy Birthday Crystal!

Ok so I know this has nothing to do with Skyler's illness but I thought it was sweet so I figured I'd share.

Every year for my birthday my mom takes Skyler shopping for a present for me and lets him pick out whatever he wants.  He always goes straight for the Halloween section and picks out lots of Halloween things.  Last year one of the presents was a black bat, I loved it and hung it from my ceiling all year.  I think its so cute because he is actually really picky about the things he picks out.  So this year I was bummed that I wouldnt get my Halloween presents from him, but the staff came in and gave me this.  Alot of the nurses and doctors working with him signed it.  I thought it was really sweet and in a way I got my Halloween present from him :)

Also my mom went shopping and got me this cute Halloween dog that moves and sings the Ghostbusters song and a Toy Story card that sings (because for Skyler its not a card if it doesnt sing) These are things that she thought that Skyler would have picked out for me and she was SO right!

This is a painting that my uncle Eric painted for me and my grandpa made the frame. Its Skyler and me as superheros with other superheros. It also has Christ and Daddy looking down on us from Heaven. I love it!

This is a quilt that my grandma made for Skyler...so perfect!

A big thank you to my family who came and made this such a special day for me.  I love you all!!!

 Here are Skyler's bracelets.  Crystal's brother Ty suprised her by making some bracelets that say "Skyler Strong" on them in yellow, red, and orange.  He even got a kid size so all of his cousins could be Skyler Strong too!  Before Crystal knew of this surprise she had some bracelets made herself.  She made red ones that say "Super Skyler"  with the superman logo on each side of the words. 

Here is a close up of them so you can get a better look.  The yellow says "Skyler Strong" and the red says "Super Skyler". 

Today we found out that Skyler has a couple more infections.  He has been getting high fevers again so we knew something wasnt right, so they started him on two more antibiotics.  Hopefully these will start to help him and he can start feeling a little better.

On a good note, he opened his eyes and looked at me today!!  It was only for a few seconds, but when the nurse asked him to open his eyes and look at mommy he did.  I have been waiting to see those eyes again for three weeks so that was amazing to say the least!

Also his skin has been looking alot better.  He is starting to look like Skyler again.  Here is a pic of him last week. 

And this is one taken today.  To me he is looking alot better.  Way to go bug!

Happy Birthday Crystal!!  We love you so much!  You are an AMAZING mother!

 Skyler opened his eyes and looked at me for a couple seconds!!! I have been waiting for three weeks to see those eyes again. I couldn't be more happy than I am right now!!!

Skyler nodded!  For the past three weeks that we have been in the PICU Skyler has been sedated.  For some of the time they even have to paralyze him.  So the most movement I see is his chest rise and fall when the vent makes him.  But yesterday the nurse was moving him to his other side and asked him if he was comfortable and he nodded yes.  It was the most incredible thing I have seen.  I almost starting crying I was so happy.  I even woke my family up in the middle of the night to tell them...that probably wasnt the best idea though because I gave them a heart attack calling that late (middle of the night calls have not been great with our family)  The last two days now Skyler has even been moving his arms up to his face and wiggling his body.  The nurses say its ok to let him be this "awake" because it isnt affecting his vitals. Even though I still talk to him I really didnt think that he could hear me, but he does.  He is definetly in there :) So cool!!  I never thought that so much as a nod would ever make me SO HAPPY.  I will never take the little things for granted ever again.  I love you to infinity and beyond Skyler!!!

I was looking through Skyler's pictures and had to post this picture because I love it. That yellow thing is a toy he made his "superman shooter gun" and he kept it in his neck so it would be safe when he was running around the house fighting bad guys :)

Skyler had a special visitor come today, Michael Mclean came to see him!  That was pretty neat that he took the time out of his day to come see him.  I have never met him before, but he is a GREAT guy and I am grateful to have met him!