Tyler Saturday Update

Not a lot of news today. Brent stayed with Tyler last night and it was nice for me to come home and sleep in my bed. I sure missed them both, though. 

Dr. Bruckner, Tyler's primary Oncologist, came in today to check on him. She is worried since Tyler's infection is in his blood. The fact that she is worried makes us worried. She is thinking of running some more tests tomorrow. We'll see what she decides.

Ty hasn't had anymore of the shaking & fever episodes. They have been giving him Benadryl and Tylenol before they start the antibiotic and that seems to do the the trick. Hopefully that won't happen again.

Hopefully we'll have some more answers soon. I am staying home again tonight. Hopefully Brent & Ty can get some rest.

Tyler Friday Update

It has been a long week! I came home tonight to stay for the weekend and Brent is staying at the hospital with Tyler. The past 24 hours have been pretty busy. After Ty got the fever yesterday, they started him on some antibiotics. He never did throw up again, thank goodness. The blood cultures came back and he does test positive for some bacteria, meaning he does have an infection. They're still trying to narrow down exactly what it is but they switched to a different antibiotic in addition to one that he was already on. About 11:00 last night he got really shaky, irritable and pale. His heart rate was very high and he spiked a fever again. He was shivering so hard. His nurse came in and then quickly went out to call the doctor who called another doctor. Soon we had the docs in checking him out. They thought he may have had a reaction to the new antibiotic. They pumped him full of fluids really quickly and gave him some Tylenol. He seemed to settle down and then he was exhausted. Poor little man. I was so worried about him that I couldn't sleep. I finally fell asleep only to hear his heart monitor going off again around 7:00 this morning. He had the same reaction again and his nurse called in the doctor again. They pumped him full of fluids again and that plus the Tylenol helped.  Today during the day they went ahead and gave him a blood transfusion. His counts were a little low and they were hoping that would help.  This evening right around 7:00 Ty had another shivering, fever, heart rate episode. It happened after they did the antibiotic again. We're not sure if they are going to eliminate this antibiotic but that seems to make the most sense to me. We'll see what they decide. Brent said it didn't last long but I think we knew the warning signs and caught it early and gave him the Tylenol right away. Poor little guy! They said that he will probably be there several more days until they can figure out exactly what type of infection he has. Plus he has to be infection free in his blood cultures for 48 hours before they will release him. He will have to come home on IV antibiotics but that's nothing new.  They also decided that he was not getting enough nutrition and finally started him on G-tube feeds tonight. Brent and I have been asking about this for the past few weeks so we were really glad they finally made a plan and got those started. Of course, he has had such horrible diarrhea that they were trying to give his tummy a break too.  So, that's where we are tonight. I hope he and Daddy can get some rest. I will update again tomorrow. Thank you all for your love and prayers. If you haven't signed Tyler's guest book in awhile, please do. We love hearing from you!!

Tyler Thursday Update

Well Tyler certainly knows how to keep the folks here hopping. I guess he likes it here too much. He spiked a fever of 101 this morning and had a heart rate of 156. He also threw up in his bed. Not sure what is happening now. They gave him Tylenol right away which seemed to kick in quickly. They have him on a heart rate monitor which he hates! His heart rate is still running a little high and his blood pressure is too low. They started him on two different antibiotics just to be proactive in case he is getting some sort of bacterial infection. They also took blood in order to culture it and find out if there is something going on.

Like I said, Ty likes to keep us hopping. They did move us into a bigger room. Actually, we're back in room 28 which is where we spent the first eight weeks after he was diagnosed. They brought me in a hospital bed so I don't have to sleep on the horrible fold out recliner that we have nicknamed the crippler. It's not home but at least we'll be more comfortable. I didn't get to my doctor's appointment. I'll have to try and go another day.

I'll keep you all posted as we know more.

Tyler Wednesday Update

Not a ton of news tonight. Still waiting on some of the test results. Ty did have an ultrasound of his pancreas today. It didn't show much because they forgot to tell us that he shouldn't eat for four to five hours before the test. They may end up repeating the test tomorrow but we aren't sure yet. 

They are thinking that all of this is related to one of the chemo drugs, L-Asparaginase. He gets that as an injection once a week. They said that sometimes it can start causing issues with organs, stomach, pancreas, etc. The good news is that Tyler only has four L-Asparaginase injections left. We're hoping that maybe these issues will go away after that med is done. In the meantime, they started him on some pancreatic enzymes today and they also switched him to a lactose free diet. 

Tyler is still having diarrhea and still seems to be in pain anytime he eats. I guess we'll just have to give it a little time to see if these steps help. They don't want to release him until this is under control. 

So that's where we are at this point. Thanks to everyone for the continued prayers, emails, guestbook comments, etc. You are all incredible!

On another note, I go to the doctor for my right ankle again tomorrow. With any luck, she will give me permission to start putting some weight on my foot. I am sooo ready to get moving again! I'll keep you posted.

Tyler Tuesday Update

We're still here. We did get some answers today. First, Tyler's pancreas doesn't appear to be working properly. The question now is why. There are differing answers on that. They are going to start giving him some pancreatic enzymes to help replace what is being lost. Hopefully they can come up with the reasons why this is happening. 

There is also some concern because his counts are really low...even more so than they would be with a regular chemo cycle, and they don't appear to be recovering as quickly as they should. Also his glucose levels are low. Not sure what the cause is for these things either or if they're all related.

The upper GI test that he had yesterday showed that there are no blockages in his system. Instead, things are moving through way too quickly, thus resulting in malabsorption. So at least we know for sure that he isn't absorbing anything. Again, though, the question is why. 

So now that we know a little of what is happening, we need to try and figure out what is causing all of these issues. We still don't have any ideas as to when we will go home. Ty is still struggling with sever diarrhea and stomach pain. That has to be under control before they will let us head home. 

So for now, we wait. They took more blood and samples today so we'll have to wait and see what the results are and hopefully we'll get some information. I will update again when I know. Thanks to everyone for your love, prayers, emails and support!

Tyler Monday Update

We are still in the hospital, trying to get some answers.  We spent almost four hours today in X-Ray having tests done.  They have drawn vial after vial of blood and taken a bunch of stool samples.  Still no news.  Hopefully we'll hear something tomorrow.

Poor Tyler was so dehydrated that it took more than 15 hours for him to have a significantly wet diaper.  He was feeling better today because he is finally getting hydrated.  They also kept him off food and oral liquids today and he seemed to be happier and out of pain.  Something is just not right in his tummy.  Now we just have to try and figure out what it is.

Thanks to everyone for your love and prayers for Brandon and his family.  I am sure they appreciate all the love and support they have received.  

I'll keep you all posted on Tyler's progress.  

Hotel Strong

Well, we are hanging out in the ER at Hotel Strong. They are preparing to admit Tyler as I write this. He has never recovered from the horrible diarrhea and throwing up and he is super dehydrated. They have tested him for bacterial things which have all been negative. Now they're thinking that he is suffering from malabsorption. Basically his body is not absorbing anything from what he eats or gets through his g-tube. It is just coming straight out. Now we need to figure out the underlying cause.

I'll update again when I can.

Brandon

It is with great sadness and a heavy heart that I let you all know that our sweet little friend Brandon Polito passed on today and returned to live with his Father in Heaven. He was surrounded by his family and friends. Please continue to pray for his family. If you had planned to join us in fasting tomorrow, please do. We will fast for Brandon's family. Please visit his Caring Bridge site and leave a message.

Please Pray!

There are times in life when it is necessary to ask for extra prayers.  Our family believes strongly in the power of prayer.  We know that Heavenly Father hears our prayers.  We know that there are times we need to pray together, as a whole, for something specific.  This is one of those times.

Anyone who follows Tyler's Caring Bridge page knows of our little friend, Brandon.  Brandon is literally fighting for his life right now.  He has fought and won the battle against cancer.  He recently underwent his third stem cell transplant to fight his leukemia.  Yesterday they found that he is cancer free.  Unfortunately while he has been fighting the cancer, he has had no immune system.  Because of that, he has developed pneumonia.  He is now fighting with all his might to pull through this.  

Brandon's family is incredibly strong.  Brandon is incredibly strong.  But they need more!  They need prayers.  Prayers from family, friends, and strangers.  They need prayers for comfort and prayers for strength.  They need the guidance of the Spirit and the  love and peace that Heavenly Father can send.  

For us, as members of The Church of Jesus Christ of Latter Day Saints, tomorrow is fast Sunday.  Please include Brandon and his family in your fast.  Even if you are not a member of our church, if you believe in the power of fasting, please join us.  

There isn't much more I can do for this incredible family.  I am not a doctor or nurse.  I am not a miracle worker, though I wish I were.  But I can pray.  I can include my voice to the many who are already praying and I can ask for more to join us.  

Please pray specifically that Brandon's body can fight this infection.  Pray that his family can continue to be strong both physically and emotionally.  Pray that the health care professionals can do everything in their power to help.  

You can follow along with Brandon's journey on his Caring Bridge site.  www.caringbridge.org/visit/brandonpolito

When you're there, please take a moment to sign his guestbook.  Let his family know that you are thinking of them and praying for them.  

Thank you all so much!  

Blast From The Past

My friend Teri sent me this picture last night.  I almost cried!  This was taken three days after we became Emmalee's parents.  She was eighteen days old.  Tyler was almost eleven months!  Can you believe how tiny Emma was?  She looks like a doll in her car seat.  Time sure flies!

Fun

Leelou Blogs is hosting a fun Launch Party complete with give-aways.  Check them out!

 

So I Won't Forget

Emmalee is very funny.  I know I say this all the time but seriously, it is true.  I hear her pop off with funny things all the time and wish I were better about writing them down.  Tonight I had her in the tub and she was cracking me up.  She was checking out her tummy and chest and she looked up at me and said, "Mom, my boobs are getting bigger and bigger all the time."  I just agreed and moved on.  A couple minutes later she started singing, "When I grow up....I'M GOING TO WEAR A BRA!  When I grow up, I'M GOING TO WEAR A BRA!"  Seriously I thought I would wet my pants.

Just now my Mom was putting Emma's lotion on her and Emma asked if she could have some of my Mom's "magic lotion," (Sweet Pea Body Cream from Bath & Body Works.)  My Mom said yes and went to get it.  Emma says, "Wow, I am such a lucky girl!"  I love that the simple things in life make her happy.  

Insomnia

Insomnia strikes again.  It's 2:30 in the morning and here I sit.  I can't shut my brain off.  Oh well.  I guess this is a great time to give a quick update.  :)

Nathaniel turned one on September 1.  (Yes, I am a bad mom.  I haven't updated his pictures yet.  Long story.)  We took Natey for his one year check-up on Friday.  He is really growing!  He is now 17 lbs, 13 oz and 26.5 inches long!  He still hasn't registered on the growth charts but he is doing awesome considering his start in life.  He is now eating stage three foods, rolling over like crazy, trying to crawl -- he can get on all fours and rock! -- babbling non-stop and smiling all the time.  He gets a huge kick out of Tyler & Emmalee and loves being around them.  He loves watching Sesame Street, especially Elmo.  He LOVES hanging out in his jumper.  He is the easiest, happiest little guy ever.  His smile just lights up a room.  He is such an amazing gift to our family.  I can't imagine our family without him in it.

Emmalee started nursery school a couple of weeks ago.  It is two and a half hours, two mornings a week.  She LOVES it!  Her teacher is wonderful and the class is quite small, which I really like.  She is attending the same school that Tyler goes to.  Although the children in her class do not have special needs, they do have the opportunity to spend time with the other pre-school kids.  

Emma also had her check-up on Friday.  She is now 39 lbs and 39 inches!  She is growing so fast!  She is still testing her boundaries as much as she can and giving us a run for our money.  :)  Even so, she is one cute kid and I love her sassy personality, (most of the time!)

Tyler is doing alright, for the most part.  We are trying to learn to take it one day at a time.  Some days are great and we love those days.  They get us through the not so great days.  We had a bit of a scare concerning his blood glucose but thankfully it ended up being okay.  He continues to show us what it means to be strong and brave.  He is an incredible kid!  He seems to be learning new things all the time.  He hasn't been able to attend school since last February and he misses it so much!  None the less, he works hard to learn.  He can count to ten, say most of his ABC's and he has many new words.  He never ceases to amaze us!

Brent and I are doing well.  Brent's job is going great which is such a blessing.  I am so thankful that he loves his job!  I am healing more and more each day.  I go back to the doctor on November 6 and hopefully I will be ready to start putting some weight on my right foot.  I really miss walking...and driving!  

My mom is still here helping out and we are thankful for that.  She is planning to stay until after my appointment, just to be sure that I will be able to get around a bit easier.  We have been tackling quite a few projects and getting our house clean and more organized.  That is always a good feeling.

I suppose that's it from here.  Now it's 3:20 a.m. and I'm still pretty much awake.  Hmmmm, what to do next......

Autumn in Western New York

Make a Smilebox scrapbook

Out Of Touch

It has been awhile.  Life has been predictably busy.  Let's see...where to begin...

After my last post, Tyler was in the hospital.  Again.  It was only for four days, thank goodness, but it was a long four days since I was pretty much confined to the room just like he was.  Poor kid.  I have new respect for how he must feel when he is confined.  After four days and finally getting his antibiotic levels back on track, we came home.  We were thrilled!  He has been doing really well since although he is still on the IV antibiotics.  He continues to fight the MRSA around his g-tube.  Because of that, he is having surgery tomorrow to replace the long tube with a mic-e button.  We're hoping this will make a big difference for him.  He also has a scheduled lumbar puncture with spinal chemo therapy medications.  It's great that we can do it all at once so he doesn't have to go under anesthesia more often than necessary.

Brent's mom went home on September 3rd and I have missed her every single day.  We tried to convince her to stay and live with us but she really did have other things to go home to so we tried not to be too pushy.  LOL  She is incredible and we are so thankful for the time she was able to spend with us.  

My mom got here on the 10th.  It has been great to have her here and the kids are starting to settle into a routine again.  She is planning to stay for about a month.  By then I should be back on my feet.

Speaking of my feet....they are healing.  It is a slow, often painful process, but happening none the less.  I went to the doctor and she gave me permission to take off my left boot, as tolerated.  I pushed it pretty hard last weekend and then regretted it.  I ended up having to wear the boot all of this past week.  I have been keeping it off again this weekend and it is getting stronger.  I'll probably need to wear it again for a few days but it is nice to take a break, (no pun intended!)  The right foot is healing.  They took x-rays again and the surgery seems to be doing what it should.  I have several weeks left in that boot, with no pressure on my foot.  But, I am getting more and more mobile all the time.  I am getting quite creative when it comes to getting around. 

Brent is feeling better but again, it is a slow, sometimes painful, process.  He is getting stronger but still gets tired really easily.  We realized, too late, that he was allergic to the antibiotic they put him on to fight the MRSA.  Poor guy.  We thought all the awful symptoms were side effects from the infection.  Only after the antibiotic was finished did we realize that he was actually having an allergic reaction to it.  Luckily it did seem to kill the infection in the process.  Still.  I feel terrible for pushing him to finish all the pills!

Emma is doing well.  Feisty as ever.  She can be the sweetest girl in the world and then turn into a little stinker in a split second.  I suppose that's part of being a three year old.  She is starting pre-school at the end of the month and she is thrilled!  We ordered a super cute backpack and a few school clothes and she has been in girl heaven!  I am really excited for her to go.

Nathaniel is amazing.  I simply can't say enough to express just how incredible that little boy is.  He is the easiest baby ever.  He just hangs out, happy to get his bottle, happy when he gets his diaper changed, thrilled when we sit and love and play.  He doesn't cry much.  He doesn't get too upset.  He has grown so much!  He is rolling all over the place, trying to crawl some and working on sitting up.  He smiles non-stop, makes all sorts of fun noises and eats his toes as often as possible.  Quite frankly, he is the perfect baby.  :)  He turned one on September 1st.  (I still have to get that post put together!)  I can't believe he is one already.  Of course, he wasn't due until December so he is still small for his age but catching up all the time.  We just can't imagine our family without him in it!

I suppose that's enough from me for now.  I will try and do better at keeping up here.  Thanks, as always, for your continued love, support, prayers, emails, phone calls, cards, etc.  We simply could not make it through all of this without each of you!!  We love you!