Saturday, November 29, 2008
It is a never ending battle in our house to get a decent picture of the kids for our Christmas cards. The whole thing just cracks me up. I can get one or two of the kids to look at the camera at the same time but never all three. One will smile and the others won't. They'll all smile but be looking the wrong direction. Nathaniel just tends to look bewildered at the whole thing. They are just too funny. Here are the most recent attempts.
at 2:51 PM
Thursday, November 20, 2008
I have recently begun a new and exciting business with Usborne Books at Home. Usborne Books are amazing!
To get my business started, I am hosting an eShow and you are invited! You can shop online, in your own time, from today until Saturday, December 6 at 11:59 pm. I wanted to end the show in plenty of time for you to get your holiday shopping done and receive your orders. Usborne Books make wonderful holiday gifts for every child on your list!
at 3:20 PM
Thursday, November 13, 2008
Finally, after thirteen long weeks, I was given the green light today to start walking again. Of course, I will have to wear my boot and it will be awhile before I can walk without it but at least I'm making progress. She also said I can drive when I'm ready. I'm not yet but at least I know that she says it's okay.
I will have to start physical therapy again, two times a week for six weeks. They will come to the house, though, so that's a huge blessing. I know my leg is very weak. Even the little bit of walking I've done today is making me sore. That's okay, though. I'd rather be a little sore from walking than not be able to walk at all.
In other news....Tyler is doing well today. He is more tired than usual but seems to be feeling well. What a blessing! I am so thankful that we are home and things are settling down a bit. Thank goodness my mom is still here! I don't know how we would have made it through these past few weeks without her help.
Tomorrow is going to be a long day in clinic. Tyler has to have a lumbar puncture with meds and that always takes awhile. He also has an appointment with the GI docs to follow up.
Brent has to go out of town for work on Saturday. Once again, I'm glad my mom is still here.
at 12:33 PM
Wednesday, November 12, 2008
Tuesday, November 11, 2008
Sorry for the late update. Ty had a pretty good day today. He went down for an ultrasound of his pancreas pretty early this morning. We haven't heard any results yet but I'm assuming things are okay. When we got back, he was sleepy and climbed up on my pillow and laid down. I decided that was too good an opportunity to pass up so we napped until noon! He is such a snuggle bunny.
The afternoon was fairly calm. Dr. Asselin came in and said that things still look good for going home tomorrow. Ty's blood cultures are still negative for bacteria. The new antibiotic seems to be working fine with no reactions. I learned how to use the pump for his feeding tube today and that is pretty simple.
So, we're crossing our fingers and toes in hopes of going home tomorrow. I'll keep you posted!!
Monday, November 10, 2008
Tyler is having a pretty good day today. He has been entertaining all the doctors and nurses with saying his ABC's and singing songs. He knows how to ham it up!
Dr. Asselin is on service this week and when they came in to do rounds this morning she said she thinks it will likely be Wednesday before we can go home. She wants to make sure everything is in place as far as the IV antibiotics and such. She also wants to make certain that Tyler's blood cultures continue to be negative so we don't risk having to come back in. Also, we need to make sure that GI is on the same page and everyone feels confident with him going home. He will also have to go home on tube feeds so we'll have to learn how to do that. So, we're looking at a couple more days. As much as I want to get home, I also don't want to go sooner than we should. Goodness knows I don't want to have to come back anytime soon.
They weighed Ty this morning and he has gained a little more than a pound since he was admitted. That is very encouraging. He is looking a little puffy and such in his face so they took him off his fluids for awhile to see if that helps.
All in all, things are going well. I'll update again as we know more.
at 12:50 PM
Another quiet day, for the most part. Tyler seems to be feeling better today. He and Daddy slept quite a bit and I think he got more caught up on some much needed rest.
The good news is that he has tested negative for bacteria in his bloodstream for the past two days. That is one of the requirements for going home. The other good news is that they narrowed down the type of bacteria he had. Dr. Bruckner felt much more confident today knowing what it was. That made us feel much better. The antibiotics he is on seem to be doing the trick. He'll have to go home on IV antibiotics for awhile but that is totally doable.
His g-tube feeds are going well. We're praying that the combination of increased nutrition and the proper antibiotics will be just what he needs to finally start feeling better.
There is talk of possibly going home Monday. I think they want to see what the GI docs have to say and make sure, once again, that his blood cultures come back negative. We'll keep our fingers crossed.
Thank you to everyone for the nice guest book comments as well as the love and prayers. Those prayers must be working! We love you all. I will update again tomorrow.
at 12:37 AM
Saturday, November 8, 2008
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.
at 11:35 PM
Friday, November 7, 2008
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!!
at 11:23 PM
Thursday, November 6, 2008
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.
at 1:03 PM
Wednesday, November 5, 2008
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.
at 8:18 PM
Tuesday, November 4, 2008
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!
Sunday, November 2, 2008
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.
at 12:44 PM
Saturday, November 1, 2008
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.
at 6:28 PM
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!
at 10:45 AM