After 7 weeks in Intensive Care we have finally made it back up to the 4th floor.  For awhile there I didn't think this day would ever come.  And after talking to one of the nurses last  night I found out that no one thought we would make it back up here.  I guess when you finally are starting to get better that's when the real truth comes out.  The nurse told me that kids that have what Skyler had and are as sick as him dont usually get better.  Most never get their breathing tubes out.  They are calling him their miracle child because no one thought he would pull through this.  But here we are and I am so proud of him, he is such a fighter!

We have been up in our new room now for about fours hours and to tell you the truth I am having some sort of PICU with drawls or something.  Its such a different world up here.  First of all its soooo quiet.  I'm used to at least a nurse being in the room with him at all times, watching the doctors and nurses running around to different rooms, kids being life flighted in and being wheeled to and from surgery, kids crying, parents crying, code blues being called over the intercom, and alarms always going off.  Up here its so quiet.  A nurse doesn't come in unless she has to give a med or unless I push the call light,  and no one is going to watch him while he sleeps. I'm pretty much scared to death up here, but being up here means he is getting better and that's great so I have to suck it up and put a smile on my face.

Skyler actually is doing so much better.  It seems everyday he is getting stronger.  He even did a little dance for me today when I sat him up (probably one of the funniest things I have seen in a long time)  We have discovered a wonderful new thing called Music Therapy where they come in and sing to him when he has to have a procedure done or change the dressing on his bum wound.  It helps him calm down so they dont have to drug him up to do these things.  Its great and Skyler responds so well to it.

Tomorrow they are going to do a bone marrow aspiration to see where he is at with the Leukemia, figure out what is happening to all his platelets (he has to get a platelet transfusion everyday because they keep dropping so low) and to see where they need to go with his chemo.  Because he had gotten so sick, they had to go off the normal road map they would use for his chemo treatments and kind of make up a new one for him.  I think now they are wanting to get him back on a normal chemo plan so we will see what they have to say about it this week.  For awhile there I kind of forgot he even had cancer because they were treating other things that were more life threatening.  Now that we are back on the floor with other little cute bald kids and talking about chemo, its all coming back to me and I'm starting to remember that we still have three and a half years of this crazy cancer journey.

 

                    Here is Sky in his wheelchair with the Music Therapy girls

Here is Skyler and Grandpa just chillin while I'm getting everything ready to go up to the floor

Ty and Sky in the new room waiting to shoot the nurses as they walk in....they ended up shooting me instead

So Skyler's seizure the other night still remains a mystery to everyone as to why it happened.  They haven't been able to figure out what caused it because all his tests came back ok and he has been fine ever since.  I'm hoping it was just a one time thing just to scare us because that's what he is really good at lately...scaring me!  All of a sudden his blood pressure dropped which hasn't happened for awhile, then the only thing he would respond to was a deep sternum rub.   They finally ended up giving him a medicine called Mannitol which helps relieve pressure in the brain and that's when he woke up.  They then rushed him down for a CT of his brain and when that came back clean they did a Lumbar Puncture so they could check his spinal fluid for meningitis, which came back negative.  I am just so grateful for the wonderful nurse that was on that night.  She recognized that there was a problem and made things happen quickly.  I am so grateful to her and am so grateful for all the nurses out there who take what they do seriously and are good at it.  Ever since that night things have been looking good for my little bug.  He has been talking more and his speech is getting a little better.  At first he sounded like a little mouse and it took him a long time to be able to get a sentence out.  But that has improved.  He has been wanting to sit up and get out of bed.  He has been trying to color and paint and do things other than just lay in bed and watch T.V.  He has been doing better with his physical therapy and even smiled and laughed for the first time when they were working his legs.  That was so wonderful to see!  I'm slowly getting my little Skyler back and its amazing.  There was a while there where they told me he wasn't going to make it and I didn't know if I would ever be able to see him awake again let alone smile and talk and give me hugs.  I will never take for granted the little things ever again! Skyler also has peed three times....yay!  I never thought I would ever be so happy about pee, but it means his kidneys are starting to get with the program, which means less time on the dialysis machine.  Today he was only on it for three hours.  They have also been going down on his sedation and IV pain meds.  He is completely off the Precedex (for sedation) Versed (sedation and anxiety) and Fentanyl (pain)  They now have him on oral Ativan, Methadone, and Morphine.  This is good because to be able to  go back up to the Oncology floor they want him to be off the IV meds and on the oral ones.  He has been having withdrawls though which make him shake and sweat and throw up.  Its awful to watch but its getting alot better.  He is getting alot better. One thing that has been hard for me to see is that he is getting really emotional.  He gets really sad and scared and worried.  He is now afraid of alot more things.  His Grandma Kathy came and gave him a Halloween singing card and he didn't want her to even open it because the front of it had a skeleton on it and it really scared him.  Poor little guy.  He has been very good at expressing his feelings though and letting us know when he is scared or worried.  I'm so glad he is doing that because I have been to talk to him about it and it seems to make him feel better after talking it through.  It kind of makes me wonder what he was dreaming about when he was completely sedated though because today he started crying and said he missed daddy.  He hasn't said anything like that for awhile so I kind of wonder if he was just catching up with daddy for the six weeks he was out of it.  This is a different kind of exhaustion that has been hitting me lately.  When he was intubated and sedated I couldn't leave him or sleep because I was afraid of anything happening to him, and now that he is awake I'm afraid to leave or go to sleep because he needs his mommy to be by him and make him feel better.  It scares me to not be right next to him when he is awake because something might happen again where that could be the last time when I see him awake.  I hate the fact that I'm constantly scared but Ive come to learn that that's just what this cancer journey brings.  You never know what will happen, so I have learned to live in the moment and enjoy and celebrate the moments that I do have.

I just took this picture of Skyler smiling.  My heart is full!

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!