Saturday, April 30, 2011

Still no answers.  It has gotten to the point where they have just gone down the list of every test they could send off and still everything came back negative.  The only symptoms he is having are fevers and diarrhea.  The next step now are more invasive tests.  Because of the diarrhea they are scheduling him for a colonoscopy on Tuesday.  If they cant see anything then they will do an echo of his heart, but instead of the regular test they would send a scope down his throat and look at the right chambers of his heart.  If those come back negative and he is still having high fevers then they will have to do the CT with contrast and a full body MRI.  What was supposed to be a one day stay has turned into a long confusing one.  But I have learned to accept that things just never go as planned with Skyler.


Sky is struggling right now to say the least.  He cries (well screams) everyday that he wants to go home.  This is such a different stay than the last.  Last time he really wasnt with it to even care that he was in the hospital.   This time he is very aware that he doesnt want to be here.  He gets very angry when a nurse or doctor comes in and wants to listen to him or get anywhere close to him.  He has just had enough and I cant blame him.  He needs to be home and thats what I am trying to make happen right now.  I actually talked to the attending today to send us home.  We have been here for over two weeks now and we still dont know anything.  The things they are doing for him here I can do at home.  I would have to give him 4 different antibiotics and antifungals through his central line throughout the day and night but at least I would be doing it, not two different nurses everyday that dont know him.  I still have a very hard time letting the nurses touch his line.  We could come up once a day to draw labs and cultures if needed. Plus he wouldnt be exposed to all the viruses one can catch being at a hospital, he wouldnt have to be in bed most of the day getting break down,  instead he would be at home walking around and exercising his legs. The main reason right now though is to maintain his sanity.  Hopefully they will send us home tomorrow.

They had to give him a blood transfusion yesterday because his hematocrit was low.  I am so grateful to those have donated blood products.  I wish they could see that it really does save lives.  I wish this donor could see the 4 year old little boy that was so pale and tired and weak before he recieved his transfusion.  I wish they could see that THEIR blood brought color back to him, gave him energy, brought his heart rate down and his oxygen level up.  Thank you.


This picture is cute and sad at the same time.  I love when he cuddles with his stuffed animals to go to sleep, but even when he is sleeping he has that worried, distressed look on his face.

Thursday, April 28, 2011

About a month ago I filled out a form on Skyler and sent it to Songs of Love.  Songs of Love is an organization that makes songs for sick kids.  We got Skyler's song in the mail today and it couldnt have come at a more perfect time.  I have already listened to it a million times and cant get it out of my head.  I love it because it is perfect for Skyler.  This is something that we will always cherish.  Thank you Songs of Love!

I put it with some pictures...enjoy!

video
Tonight as we were laying in bed Skyler asked me "Mom when I have to do all my hard scary stuff does it hurt your heart?"  He was right on.  Thats exactly how I feel and it reminded me of this video Skyler's grandma's friend made, and our song.  Whenever Skyler hears this song he knows that its his song from mommy.

http://www.youtube.com/watch?v=UvNFQbMOemk&feature=player_embedded

Tuesday, April 26, 2011

So I know I already posted today but if I dont write things down when I find them out I forget things.  I talked to a couple attending docs about what we found out today and they are all pretty much in agreement that aside from cancer Skyler also has an immune deficiency or syndrome.  He definitely does not have a normal immune system, and then add cancer on top of that and it makes for an easier time getting infections.  He has just had too many odd things that arent supposed to happen with his type of cancer.  It does make sense though because it seems that his whole life he has been sick.  He always had some type of virus that turned into croup.  He could never go longer than five weeks without getting croup.  To find out for sure what type of immune problem he does have he needs to be off chemo, so it looks like in a little over three years we will find out the answer for sure.
Our plan now since we still dont have any answers is to basically just wait and see what his counts and fevers do over the next week or so.  If they are trending down then thats good and we will just leave him on these 3 antibiotics for several months.  If nothing changes or things start trending up then we will have to look into changing around his meds and doing a full body CT scan with contrast this time.  They normally give contrast through an IV before they get scanned so they can see everything, but we have been doing his without contrast because contrast hurts the kidneys and the last time we gave him contrast it landed him in the PICU the 2nd time intubated.  Im just not willing to risk that right now unless it is absolutely necessary.  The problem doing it without contrast though is that you cant see everything so we could be missing something.  One of the hardest things for me is trying to make the right decisions is Skylers care.  I have had to make some pretty big decisions that I wish I never had to make, but this is the situation we were dealt I have tried so hard to make the right ones.  I think one of the biggest lessons I have learned is to go with my gut.  A mothers intuition is key.  I have learned so much about myself through this process and I am grateful for that.  I wish I could have learned these things without the words "child" and "cancer" in the same sentence, but I believe we are given trials for a reason and we can become better and stronger because of them.  Thank you everyone for your continued support.  I have become a better person because of you and your service, kind words and encouragement.  This devastating world of cancer really has opened my eyes to the good people in this world.

I was able to take the bandage off of Skyler's chest tube site.  This is his 6th chest tube scar, one of the many scars that he is covered from head to toe in.  There isnt a limb on him now without at least one cancer scar.


And this is just a cute picture I took today.  His cancer buddy gave it to him and it makes me laugh everytime I look at it.

The preliminary results came back from Washington today....all NEGATIVE.  What?!  Im so confused.  We are all so confused.  How can everything come back negative when he is still having high fevers every 4 hours now.  The nodules looked like abscesses with puss in them, so obviously its some kind of infection but no one can put a name to it.  The Adeno virus test in his blood came back negative as well but the test for it on the nodules is still pending.  The ID doc said that if its negative in his blood than it would most likely be negative in his lungs.  So what now?  Im growing more and more concerned that this is cancer related.  The pathologist that looked at the sample said it looked more like bacteria than cancer, but I want them to go and test that sample for every cancerous cell possible and I also want them to redo a bone marrow aspirate.  They say its not likely but I want them to be POSITIVE its not cancer.  If that comes back good then the next question is how to treat something that they have no clue what it is.  He is on 3 broad spectrum antibiotics right now (which dont seem to be doing anything)  How long does he need to stay on those?  Are they going to send us home with fevers?  Are we still going to be here for his birthday in two weeks still not knowing whats going on?  I just wish we had an answer.  I want to know whats making my son so sick.

Sunday, April 24, 2011

Skyler celebrated his fifth holiday in the hospital today, in isolation nonetheless.  As sad as we all were about being here for Easter and not being able to do our big Easter egg hunt with all the cousins, we decided that we were going to make it a good one even though Skyler wasnt allowed to leave his tiny little room.  Last night we set out Skyler's Easter basket and set out carrots for the Easter Bunny too.  Skyler decided he wanted to leave a trail of carrots for the bunny starting from outside our door leading to his basket and then my bed (dont ask me why he wanted the bunny to go to my bed..silly boy) He also drew a map for the Easter Bunny so he knew where to go.  During the night he still has to have his vitals taken, get hooked up to his IV meds, unhooked, labs and cultures drawn and re hooked up to his IV meds, so I was worried the Easter Bunny might get caught.  But luckily he came in ate his yummy carrots and left presents without being heard.  Skyler did wake up in the middle of the night though and saw in the dark that the Easter Bunny had come already, he started laughing and kept saying "Wow that bunny is a fast one and he left a ton of stuff!"  It was so cute the way he was so excited but he knew he shouldnt be looking so he tried hard not to and just went back to sleep.  When he woke up he finally got to see what the bunny had left.  The staff also left a basket of stuff for him too.  Later some of my family came up to celebrate.  Since kids under 14 arent allowed on the floor just my mom, dad, two brothers and sister in law came.  My mom brought up a yummy lunch (thank goodness for no hospital food) and we played pin the ears on the bunny, did a pinata, frosted a bunny cake, and then played a little Mario on the Wii.  We were also going to do an Easter egg hunt in here but Skyler got too tired.  We had a few melt downs along the way but overall we had a great Easter.  Im grateful my family could come and celebrate with us.  Happy Easter everyone!!


As for an update on Skyler.  He is still having really high fevers every 8 hours, so no improvement there, but he is actually off oxygen completely.  I havent even had to give him any blow by for a couple of days now!  I am so grateful for this.  He does have a cough now that is getting worse everyday.  The doc said that he may just be trying to cough up and clear some fluid that was in his lungs.  We still havent heard any results back from Washington, but hopefully tomorrow we will.  Dont hold your breath though because one thing I have learned about being in the hospital is that things always take longer than they are supposed to.  They did do another CT of his lungs the other day to see what the nodules are doing and they have stayed the same.  Im sad they are still there and havent gotten any smaller, but at least they arent any bigger.  As hard as it is, Im trying hard to look at the bright side of things.  So even though he may have two very serious infections going on and we may be here for awhile, at least his cancer is still in remission, he is off oxygen, and we are up in ICS not the PICU.

           Here is Skyler putting out the carrots for the Easter Bunny


The trail of carrots...


Can you see those two little carrots in front of our door?  Cute huh?


Here he is drawing his map for the bunny


He even put an X by my bed to mark the spot saying thats where he needs to stop


Here he is looking at all of his goodies.  He thought is was hilarious that the Easter Bunny brought him underwear.


He said he didnt want candy from the Easter Bunny (the chemo makes sugar taste yucky to him) so he got peanuts and other snacks in his eggs.


Even though its Easter he still has to do all of his normal hospital stuff


This is my mom with the food she brought us.  Thanks mom!


Skyler thought it was yummy too! Dont mind the hair, he is starting to lose it so its in a funky stage.


And this is one of his little melt down moments. 


My awesome family about to pin the ears on the bunny.  Skyler thought Ty looked funny


And this was the result, not too shabby!


I forgot to bring a bat for the pinata so we called Kids Crew (volunteers) and the only thing they could find to hit it was a guitar.  It worked and we only had a couple minor injuries.  Look at my mom's face, I think she was scared..haha


Sky is the one that broke it open.  Way to go buddy


Skyler helped frost the bunny cake, but most got into his mouth.



This is Skyler's loot from the pinata!


HAPPY EASTER FROM ME AND SKYLER

Friday, April 22, 2011

So I just talked to ID, they said that if it is in his blood or lungs then yes it is bad.  The drug to treat it is harsh, harsh like chemo harsh.  We wont get results for another couple of days or so.  Since he is still having high fevers he will go in for another CT today to see what the nodules are doing.  It looks like we are dealing with two infections.   Also we have only been here a week but Skyler is also dealing with some more break down on his bum even though I turn him every two hours.  The last thing he needs is another wound on his bum.  Im pretty sad at how things are turning out.  We will be here for at least a couple of weeks it looks like.

Thursday, April 21, 2011

Well we have something.  Skyler tested positive for Adeno virus in his stool today.  This is a virus that usually lays dormant in your body but when your immune system gets suppressed it can become active.  It can cause diarrhea and fevers, he has both.  They are going to test his blood tomorrow to see how far it has spread in his body.  They are also going to call the lab in Washington to have them test the sample they took from his lungs and test it for this virus as well.  Hopefully its just in his stool and not everywhere else.  They still think he has a bacterial infection but this virus can also be in his lungs.  I cant tell if they think this is a serious thing if its in his lungs or not.  The resident is the one that told me tonight and she is not the type that just lays in out there.  I am not a fan of docs who sugar coat things, I want the straight forward answer.  Oh well, I will sit down and talk with the Infectious Disease doctors tomorrow so I can learn more.  Im relieved that I have at least some kind of answer, not the whole answer but Ill take anything I can get right now.  This means that Skyler will have to remain in Isolation (stuck in his little room) until it clears. Thank you everyone for all your thoughts and prayers.  It really means so much to me and Skyler.  I love you all!



Still here.  Still no answers.  Still needing oxygen.  Still having high fevers.  Skyler's hematocrit was also low making him really tired and pale so they gave him a blood transfusion today.  He also cant leave his room because they have him on contact precautions where they have to gown up when they come in the room pending some tests.  It also looks like the site where they did the biopsy may be infected.  The surgeons will come look at him early in the morning.  If that is the case it will need to be drained.  Skyler has hit his breaking point and is just sick of everything.  He cries everyday almost all day that nobody loves him and that everyone just wants to hurt him.  This little boy has been through enough, why do more things keep piling up on his plate?  Why cant he have a normal care free life?  He is just a little innocent child, he deserves to be happy running around laughing with other kids.  If you cant tell Im at my breaking point.  I NEED my little boy to get better.  I cant even describe the pain I feel having to watch him day in and day out suffer and not be able to make it better.



Monday, April 18, 2011

Still no growth and no answers.  They sent the biopsy to the University of Washington today but it can take up to 8 days to get results.  It so frustrating not knowing whats going on.  They are pretty positive its a rare bacterial infection but we dont have a name yet.  Things just havent been improving either being on these new IV antibiotics.  He still is having high fevers and still requiring oxygen.  His white count jumped up to 20 today and his CRP (a test showing infection) jumped up as well.  The doctors just keep saying that it just doesnt happen like this.  Skyler is the perfect example of things not ever going as planned.  There is no end in sight yet and I hate the fact that we may be here for Easter.  He was so looking forward to Easter and having an Easter Egg hunt with his cousins. 
We did start chemo again today.  He got the dose of Vincristine and Doxorubicin that he missed last week.  Our oncologist thought it would be ok since he has counts.  We did the CT of his brain today and it came back clean.  The doctors, as well as me, were concerned with this sudden change of moods especially since he isnt on steroids.  Steroids can cause this type of behavior but Skyler is unable to take them because of his fungal infection.  Thank goodness the brain isnt the cause.  The child physcologist came and talked with me and Skyler today and his take on it is that he is just sick of being sick.  He is now realizing that all these hard, scary, not fun things he has to do everyday arent going away and he is reverting back a little in how he is handling things.  He was actually impressed at how mature he is though, and its true, Skyler has had to grow up too fast.

You cant tell in this picture very well, but Sky started getting a weird rash on his back.  We dont know why but hopefully it goes away soon.


Smiling while getting chemo

Sunday, April 17, 2011

Nothing has grown yet from the biopsy.  The Infectious Disease doctor says that the nodules are little abscesses filled with puss.  If nothing has grown tomorrow they will send the sample to the University of Washington where they are experts in testing the DNA of the bacteria.  Hopefully they will be able to identify exactly what this is. 
I havent mentioned this before but for the past couple of weeks Skylers moods have changed dramatically.  He isnt the happy, calm, sweet boy that I know right now.  He has been VERY angry and yells and hits all the time now.  I havent seen him laugh much either which he normally does all the time.  I thought at first that he just wasnt feeling well, but it has continued on for at least a couple of weeks now 24-7.  He will switch back to his sweet self and tell me he is sorry for being mean and that he still loves me but then he will switch back to being angry really fast.  I am actually very concerned that something is going on.  This change happened very suddenly and its SO different from how he normally is.  He will be going down for a CT scan of his brain tomorrow to see if that can tell us more.  The child phsycologist is going to evaluate him tomorrow also to see if he thinks this is medical or behavioral.  Please pray that nothing is wrong with his brain.
Also he has a pneumothorax (air in his lungs) so he is requiring more oxygen at night now.  Instead of the blow by we put him on a nasal cannula last night.  Im praying this oxygen issue will correct itself soon.  I hate the fact that he needs oxygen, I have gotten used to seeing him with no tubes on his face.  He was so sad that he had to have another tube in his nose, but once we got it on and he could actually breathe it didnt bother him at all.  He was so good at putting it right back where it should be when it fell out.  It looks like we will be staying here longer than I had hoped.
For some good news, Skyler was able to go and walk out in the halls last night.  He was in pain but still wanted to try.  He did great and didnt even want to hold my hand.  The nurses were blown away because most of them have never seen him walk.  This was his first time walking in the halls all by himself.  That first week he was diagnosed I think he walked out in the halls once but had to have help because he was so sick.  It made my day seeing him do this.  Good job Skyler!


Friday, April 15, 2011

They havent seen any signs of fungus yet.  It looks like we may be dealing with a very rare bacterial infection.  We dont know much more than that yet because these things can take up to a week to grow.  In the mean time they started him on two strong antibiotics for bacterial infections until we know exactly what we are dealing with.  Through the night Skyler continued to be really croupy and his oxygen would drop to the low 80's really fast if he didnt have the blow by oxygen right up next to him.  This morning they decided to pull his chest tube, because the less plastic in him the better.  This was traumatizing for him.  He just kept saying over and over "Quit doing this to me, you are hurting me so bad!"  He actually did better than I would have.  They couldnt get the stitch out so they were digging the scissors right into the hole in his chest.  It took everything in me to not knock those scissors from her hands.  I never thought a 4 year old would be my hero, but Skyler is.  He is the epitome of strength and courage.  He has had to grow up too fast but he has handled it well.  Thank you Skyler for being such a great example to your mother and everyone around you.  I love you with all my heart and Im so proud of you.  You have had to do so many hard things, more than any one person should have to go through in a life time but yet you still are a shining light to so many. 

Thursday, April 14, 2011

Today was the big surgery day.  Skyler and momma were both scared.  I held off telling him until last night because I didnt want him having anxiety about it for too long.  Even though he was really scared, we talked about it and I after I answered all of his questions he seemed to calm down.  At 8:00 this morning he was scheduled to go in for a CT scan.  There they sedated him, stuck a needle into his lung where one of the nodules was and injected some dye.  That way when he went in for surgery the surgeon would be able to see better the part of the lung that he would remove.  To sedate him they gave him Versed, Ketamine, and Fentynel (I dont know how to spell those)  I hate Ketamine.  It puts him into lala land and he doesnt remember a thing, but he still has his eyes open looking at me and they twitch back and forth.  I like it much better when they just knock him out and he looks like he is sleeping.  Its also easier for me when I have to leave him in the room if he looks like he is peacefully sleeping.  Its hard leaving my little boy laying on the table alone when he is looking at me and I have no idea if he is aware that mommy is leaving him all by himself.  Ugh that one really got to me today.

The procedure went really well and they were able to inject the dye in the right spot.  The guys that did it are the ones that put in all his dialysis catheters and were so used to seeing him at his worst, so they were blown away by how good he looked.  When they were done he woke up crying and wanting mommy and still had the effects of the drugs in his system.  It was kind of funny because he was looking at me all weird and saying I had two noses and mouths and four eyes, he was also playing with my hair because he was fascinated by it. Silly boy.  As soon as he was more awake and I had two eyes again, they took him to a room in post op to wait for his surgery.  The poor kid had to wake up out of sedation and be put in a room for over two hours while not being able to eat or drink, and then be put out again.  I was really worried that this would turn into a disaster but he did so much better than I thought he would.  Again, he never ceases to amaze me.  At about 11:30 they took him back to the operating room.  The surgeon was actually the one that removed his spleen and is wonderful so I was confident he was in good hands.  Its nice having people who have worked with him at his sickest because they understand how fragile and "special" he is.  The surgery was about an hour and a half and went really well.  They made an incision in his back, spread his ribs apart, stuck a scope in there and took the part of his lung they wanted to biopsy.  He woke up in extreme pain though.  They had to give him two doses of Morphine and he was still in pain, it was so sad to see and it broke my heart.  When we got up to our room here in ICS they gave him another dose of Morphine for his pain.  He has pretty much been in pain most of the day.  They said to expect this because they had to spread his ribs and also put in a pretty large chest tube to drain the excess fluid and air.  Right now he is doing ok, not great, but ok.  His oxygen level has stayed pretty low so he is requiring blow by oxygen.  He also starting getting really croupy and now they suspect he has a pneumothorax (air in his lung)   I just hope that this chest tube will be able to fix this and it doesnt get any worse.

We still havent gotten any test results back yet.  Hopefully by tomorrow or the next day they will know something.  We dont know how long he will have to stay here at the hospital, it just depends on how he does and what they find.  I will update more when I know more.  Thank you for all your prayers.

                      Getting ready to go back for the CT scan


Just waking up from the CT and being taken back to the recovery room


This was when mommy had four eyes.  Look at him concentrate on my face.  I must have looked so weird to him.


This was back in the post op room waiting to go back to the operating room.  Thank goodness they had a TV in there.


Still recovering when we got back up to our room.


That is the dreaded chest tube that they left in to drain 


In this picture you can see one of the incisions they made on his back, and then up kind of by his shoulder where the circle is is where they went into his lung in CT


You can tell in this picture that he just does not feel good at all.

Tuesday, April 12, 2011

Skyler still continued to have fevers throught he night and the morning.  The cultures and the viral tests all came back negative so they sent us up for a CT scan today.  I was praying that they wouldnt find anything and that this would just be a mysterious fever that would just go away on its own.  I was wrong.  The scan showed pockets of infection in his lungs.  We are pretty certain its the fungal infection again.  What we dont know is the best way to go about treating it.  We need to know if we just need to switch antifungal medications, add a new one to the mix or if this is a different fungus all together.  We have two options in how to proceed with this.  We can start him on an extra antifungal and see how he responds or we could take him to the operating room and biopsy part of his lung.  The problem with just seeing how he responds to a new medication is that he could progressively get worse fast and if he gets too sick like he was before he would be too sick to handle a surgery like this.  I opted for the surgery now.  As scary as this is, I want to know exactly what we are dealing with while he is healthy enough to tolerate the surgery.  He will go in Thursday for the biopsy.  They will take him to get a CT scan first.  He will be sedated and they will stick a needle into the part of his lung where a little pocket of infection is and inject some dye.  Next they will take him to the operating room, intubate him, stick a scope into his lungs, collapse his lung and remove a part of his lung to biopsy.  However, if the spot is too hard to reach with a scope they will have to make a large incision on the side of his lung and open him up.  Either way he will most likely end up with another dreaded chest tube to drain any extra fluid or air.  We will be inpatient for awhile depending on how he does.  If everything goes well they could probably send him to ICS instead of the PICU to recover.  Hopefully the sample they take will be able to tell use just what we are dealing with and the best way to treat it.  Please pray that this is NOT a new form of fungus.  That would be devastating.  This whole situation is devastating actually.  I thought we were over the worst part.  I am so scared to go down this road again.  I am scared for Skyler.  He has been doing so good lately, he has come too far to have another huge set back.  Please pray for his safety during surgery.  Please pray that this is something that isnt going to send him back to a bad place.  Please pray that after the surgery he will be able to receive his chemo again so we can keep this dreaded cancer away that started all this in this first place.  The doctor said that most likely this phase of treatment helped activate this infection.  This is exactly what I feared would happen.

Right now his temp is 104.4.  The fever curve is getting higher so hopefully we can get him treated properly fast.  We will go to clinic again tomorrow for more cultures and to see what his counts are.  Hopefully they havent dropped yet.  Thank you for all your prayers and support.  It means so much to me especially during this difficult time.

Monday, April 11, 2011

Skyler continued having fevers through the night and into the morning.  He also woke up today with his right eye almost completely swollen shut.  His urine and vomit have turned from a dark orange to a bright yellow color.  I took him into clinic today and they did more cultures, a nose swab checking for viruses, and also gave him more Rocephin.  Besides the nose swab, they drew some additional blood to check for mono and CMV (which he has had active before)  So far the cultures from the last 3 days have come back negative.  Thats a good thing, but he is still having these high fevers and I want an answer as to why.  If he is still feverish tomorrow our next step is to scan his sinuses and body for anything that could be hiding in his organs.  They are also going to hold off on his chemo he is supposed to get tomorrow.  The doctor we saw today wants to keep a very close eye on him because Skyler is "special" and never does anything along the lines of normal.  He told me that in all the years he has worked he has never taken care of a child like Skyler.  That doesnt make me feel too great hearing that.  
His white count and ANC did come down a little though, so thats good.  His platelets went down too, which is not good.  Also his bili went from .3 to 1.0 so thats concerning.  Its still in the normal range but I just hope it doesnt go any higher.  All around Skyler has been feeling pretty crappy.  You can just tell by looking at him he doesnt feel good.  I just hope we can get answers with these tests we did today so we dont have to resort to scans.  These past few days have just seemed all too familiar to me and I dont like it.

The swelling in his eye had gone down by the time we got to clinic but you can just tell that he doesnt feel good.  (sorry this was taken with my phone so its not the best quality)


Skyler is so sick of people touching his line so he was really grumpy with this part.  This guy is my favorite nurse up at clinic though and handled it really well. 

Sunday, April 10, 2011

The night before last Skyler developed a fever of a 100.4.  A fever in a cancer patient isnt taken lightly so the protocol is if Skyler stayed above 100.3 for over an hour he needs to go to the ER, or if he has a one time temp of 101 or above.  Skyler stayed at 100.4 for only 45 mins and then slowly started to go down.  I was so relieved and just thought that it was a fluke or something, but no the next day he got up to 102 so off to the ER we went.  They drew cultures and gave him an IV antibiotic, Rocephin.  His counts came back and his white count had almost doubled and his ANC was 12.0!  The high end of normal for an ANC is 8.0 so I really didnt believe it when they told me (it was right though) weird.  They told me that his body was responding appropriately though to whatever is going on.  His hematocrit came back really low so he was in need of a blood transfusion.  I wasnt surprised, he has been looking really pale lately so I was expecting this.  They told me I could wait and get it done in the ER (no thank you) or wait until the next day and get in done in ICS.  Of course I chose ICS.  The less time spent in the ER the better, and also the less someone from the ER touches his line the better.  No one there knows how to work his line because they dont see dialysis catheters very often so I usually have to teach them.  Its very frustrating.  That night Skyler's temp got close to 103 but I just gave him Tylenol knowing that we would be going back up to the hospital soon anyway.  So when we woke up we got admitted to ICS for some much needed blood.  Thank you donors!!  They cultured his line again, gave him blood, and another dose of Rocephin and were sent home.  He still had a fever but we were told there wasnt much more they could do without knowing what was going on.  We just had to wait for the cultures to come back.  The doc said to call in the morning if he still had a fever, if he did then they wanted him back up there for more antibiotics and cultures.  During the night he got up to 102.7 and was still feverish when he woke up, so back up to the hospital we went today.  They cultured his line again and gave another dose of Rocephin.  The cultures so far have not grown anything.  Thank goodness!  But today his white count went up even higher to 18 and his ANC is now 15.6.  They are both so high, so obviously he has some kind of infection.  His platelet count also dropped from over 300 to 88 in two days.  Thats the lowest it has been for awhile.  Im worried that his body is getting resistant to the anitfungal medication I give him every night.  It has happened before in the PICU and we had to change the medication.  I hope this is not the case because having his fungal infection become active again is a scary thought.  To say Im worried right now is an understatement.  I just cannot deal with another bad infection and long stay again.  I dont know how I got through 4 1/2 straight months there, these two days have been hard.  Poor little guy, I feel so bad for him.  He deserves to feel good for a change.  I wish with everything in me that this had happened to me instead of my little boy.  Its hard watching him have to go through all this and feel so yucky all the time and know that there is nothing I can do to make it better.

The plan for tonight is more Tylenol if needed and if he is still having fevers then tomorrow we will go up to clinic and hopefully Dr. Lemons will be there.  Please pray this isnt anything bad and that his body will fight off whatever is going on.



Saturday, April 9, 2011

We were admitted today to ICS because of a fever and also because Skyler needed a blood transfusion.  I just knew he didnt look right.  I will post more on this later.

Thursday, April 7, 2011

Clinic went well this week.  Skyler got another dose of Vinc and Doxo and has been doing well with them so far.  He still gets nauseous and throws up, but it hasnt been unbearable.  His bone marrow results came back and he is still in remission!  Im so relieved. I always get really anxious waiting for that report to come back.  Skyler's ANC also jumped up from 900 to 5600!  I was expecting it to drop really low so I was really surprised.  I thought I was looking at someone else's labs at first.  The doc says that sometimes they will jump up before they drop, and they will drop within the next week or two.  One thing that I am worried about is his bili has gone up along with his AST and ALT (liver function)  The bili isnt too high and its still in the normal range but the AST and ALT are alot higher than I want them to be.  We will just have to keep a close eye on them.  Skyler doesnt look yellow (jaundice) but his coloring looks a little off to me.  His hematocrit was low, not low enough for a transfusion but I think he may need one here in the near future. 

Skyler is a champ now when it comes to taking his meds by mouth and eating.  He definitely doesnt like to do it but he does it anyway.  I am so proud of that boy!  I thought he was going to have to have that tube in for at least another year.  He continues to amaze me everyday.  I am in awe of his strength and courage.  He has had to go through so much yet he still is the happiest and sweetest little boy.  He has a heart of gold.  He is always thinking of others and ways to make them happy.  The other day we got alot of Easter stuff to make.  We decorated eggs, made Easter cookies and filled Easter eggs with candy.  When he was done he had to make sure EVERYONE had one of each.  He gave away all of his stuff to his cousins, Ty, me, grandma and grandpa.  He didnt even leave any left for him even though he was so excited about me getting all that stuff for him.  Thats just how he is, he is happy making others happy.  I really am so grateful to be his mom.

Im not sure if I have written about this before, but a couple months before Skyler was diagnosed he had part of a lump removed from his jaw bone.  A year prior I noticed the lump.   I decided to keep on eye on it but it just kept getting bigger.  It got so big to the point that it was noticeable just looking at him.  I took him into an ENT and he said he needed to have a biopsy of it to make sure it wasnt cancerous.  To be able to have the surgery done he needed to be five weeks free of croup.  That never happened.  A year later of trying (I cant believe they let us go that long) the ENT said that he wanted to do the surgery anyway and also scope his throat to see why he was getting croup so often.  So finally in May they did the biopsy.  They took a big chunk and were supposed to send it to pathology, but it never made it there.  They had to redo the surgery  due to staff error.  I was so angry.  Good thing they left a little in there though so they could do the biopsy.  The problem though was that the mass that was left was intertwined with the nerves in his face.  This one was going to be more tricky because if they nicked a nerve then he may lose function on that side.  They did the biopsy and it turned out they did nick a little nerve and he lost function of half his lip on that side.  It did go away though within a couple months.  The results came back saying that is was a Lipofibromatosis.  A mass of fatty tissue that will just keep growing back.  We were so happy that it wasnt cancerous.  Little did we know that just a few months later he would be diagnosed with Leukemia.  Anyway, so lately I have noticed that once again he is losing some function in that part of his lip.  When he cries, that part of his lip doesnt move right.  I can also feel that the mass is growing back.  I am so worried about him.  I would hate for him to go through another surgery and lose more function because it could be more than his lip this time.  He has an appointment Monday with the ENT to check it again.  We dont think he will do anything now but we want him to be involved again to keep a close eye on it.  I really hope doesnt cause more problems, especially now that he is in the battle of his life with Leukemia.

                                             This was after the first surgery



This was the second surgery.  They had to place a drain because it was draining so much blood.


You can see the tube from the drain in this picture


This is the scar.  One of the MANY battle wounds he now has.