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!!

12 comments:

Briana said...

Oh, I'm so sorry to hear about this! We have been celebrating all the miracles that have been happening lately - it has been amazing seeing pictures of Skyler's eyes open and him awake and sitting up. This has got to be such a frustrating, disappointing, scary setback. Skyler is such a fighter. Poor little guy - I'm sorry he has to go through so much.

Way to stick to your mama's intuition! It's important. When we've been inpatient, we've always had doctors and nurses who tell us that WE know Elena best and that our instinct and feelings and knowledge of her are an important part of the decision making process. The doctors and nurses are WONDERFUL, but the are human and make mistakes and they don't have the intimate knowledge of our children that we do. It's not always easy to, but it's good that you stepped in and spoke up.

We continue to pray for you guys!

cjmom said...

We are all sending good thoughts your way and both you and Skyler are in our prayers everyday.

lindsay Roscoe said...

Crystal I can't even imagine the roller coaster youare on. You are STRONG and there for Skyler is STRONG! Strongest 2 people I have ever known. Prays always going on here for Super Skyler and his mom.
On a side note Amanda mentioned you may come this "Dr mom" party. It all about essential 100% oils and their healing effects. I purchased some this weekend and am speechless with the effects. If there is anyway you can come, I know your days are so day by day I think you both could bebeift from them. I even could bring you up my kit and let you check them out at the hospital or Amanda could since you know her. I would share them with the world they wonderful even if it's just because they smell wonderful.

lindsay Roscoe said...

Crystal I can't even imagine the roller coaster youare on. You are STRONG and there for Skyler is STRONG! Strongest 2 people I have ever known. Prays always going on here for Super Skyler and his mom.
On a side note Amanda mentioned you may come this "Dr mom" party. It all about essential 100% oils and their healing effects. I purchased some this weekend and am speechless with the effects. If there is anyway you can come, I know your days are so day by day I think you both could bebeift from them. I even could bring you up my kit and let you check them out at the hospital or Amanda could since you know her. I would share them with the world they wonderful even if it's just because they smell wonderful.

The Schaefermeyer Family! said...

Oh Crystal my heart aches for you and your little guy. You stay strong for him, which I can tell you are doing! Way to tell the docs something wasn't right! Mom's are always right! We keep Skylar in our thoughts and prayers daily! Lots of love and faith being sent your way! :)

Alex + Sam Woodall said...

My heart is just aching for you crystal. Skyler has been through so much and so have you. I look up to you so much for the strength and positive attitude you have kept through all this junk. you both are in our prayers! Stay strong

Amanda said...

Mom's just know. I am so glad you listened to your instincts. If he hadn't thrown up, they wouldn't have gotten him the meds he needed. WAY TO GO! You are both amazing. Will continue to pray!

HUGS!
Amanda and Millie

Dani said...

He really is your little roller coaster. Up and down and back up. We continue to pray for you. Way to go with your gut. You are an awesome mama!!!

Chelsea said...

Mothers intuition is SO important! Im so glad you followed yours! Im sorry you guys are back down there, but Im glad he is getting the medicine and care he needs! We love you guys and think of you all the time! XOXOXO

nsudburyfam said...

This just broke my heart to read. I'm glad that he is getting the care he needs, I hope he starts feeling better really soon. You guys are always in my thoughts.

Briana said...

Crystal,

I don't know if you've seen the Leukemia and Lymphoma Society discussion boards on their website, but they have a section for parents of children with leukemia. I just got e-mailed a new message in the "who we all are" thread (where everyone introduces themselves and tells diagnosis stories, etc.) that made me think of you and Skyler. It gave me hope and I hope it will for you too! Here is the message:

Hi,
I've been on the boards for awhile, but for some reason, never posted here...

My daughter Madison, was diagnosed SR Pre B Cell ALL on Thursday, July 10, 2008. Had BMA on Friday, got results on Saturday, no abnormal translocations, it was explained Standard or Low risk. Surgery late on Saturday to insert her port, she woke up and ate Saturday, and then started vomiting blood. She went to sleep Saturday July 12, and was not really fully conscious Sunday. By Monday, she was in respiratory distress and was rushed to the PICU. Tuesday morning they told us that her liver failed, disseminated intravascular coagulopathy, and its cause was likely a combination of tumor lysis syndrome and a bacterial infection (probably pick up in the OR that Saturday). She had massive GI hemorraging, on 1 day, it was estimated that she lost 1/2 to 2/3 of her total blood supply, she had 200+ transfusions...platelets, prbc's, plasma and cryogen (platelets from many donors, spun down to a small volume) coolers of blood products in her room so that they could just start them, one after another. Her kidneys started to fail, but once the PICU dr started a combination of diuretics, her kidneys started functioning again. She was on a ventilator for 60 days, ended up having a tracheostomy, and after the steroids from induction stopped, her entire body blistered....Steven's Johnson syndrome...an allergic reaction to the merapenum she had been on since the bacterial infection she got when her port was inserted....we spent 80 days inpatient, 60 of them were spent in the PICU with Maddie in a medically induced coma, after her trach, we started weaning her off of the cocktail of narcotics that she had been on, dilaudid, versed, morphine, ketamine, ativan and methadone, she was on a feeding tube with elemental feeds until DI...we weren;t sure if her GI system would be paralyzed from the trauma of hemorraging...at times, it seemed as if there were no end to the levels of Hell to which we could descend....

Fast forward to today, Maddie is a very smart, beautiful headstrong, spoiled rotten little girl who celebrated her last day of chemo October 1, 2010. She is the baby of 6, 4 older sisters and the best big brother in the world, so I am not the only one spoiling her rotten, I have a lot of help!

If you are new to the boards, or you child is newly diagnosed, I'm not trying to scare the daylights out of you...Maddie's journey was definitly not typical. But hopefully, my story will be encouraging, our little ones are so strong and so resilient and can clear almost any hurdle placed in front of them, I am constantly in awe of them and the courage they have.

Robyn
Mom to Madison
http://www.caringbridge.org/visit/madisongracemajor

It sounds like she had a similar hellish roller coaster like you guys have had and I just loved reading at the end where Maddie is all better now. We pray for the same thing for you and Skyler (except maybe the headstrong part. - haha!)

The link at the bottom is to her caringbridge website. Maybe that's a way you can read more of their experience or get in contact with her if you want to. Your stories just seem similar and I thought this might offer you some comfort.

-Briana

Michelle Nicol said...

Life is one roller coaster ride. I had a trial in my life that felt that way. It felt like my heart was going to burst. As I was going through this trail I learned to put my trust in God that things will get better and in time they did. It's so hard but I know in time things will get better for you and Skyler. Keep up the good work for you are truly a faithful daughter of God. Thanks once again for your example for being so courageous.