I spoke too soon...

After trying the oral med for 4 days, it was clear that he needed IV meds.  Because he's still on steroids, his immune system is down and the shingles were loving it.

This is what he looked like on Sunday (2/17), even after being on the IV meds for 3 days. Keep in mind that there were just as many spots in his hair as there was on his visible skin.

  On Sunday, they increased his dose (why he wasn't on the highest dose to begin with, I have no idea...) On Monday, it seemed like things were slowing down and he had more "crusties." Tuesday, after going back and forth all day, it was decided that he could go home on a very high dose of oral meds. (The word PICC line was said more than once, and I am so glad that we avoided that!) He has strict instructions that he HAS TO drink 2 liters of water every day. So far, he is doing great.   I am so proud of him.

The plan is to keep him on this high dose of anti-viral med until he's off of prednisone, which should be next week!!  Praying that this is true because it makes him dizzy and have headaches.  He is such a little trooper.

HAPPY 5th BIRTHDAY ISAAC!!

Our sweet IZ-Boo, Boozy, Booz, Iche, IZ, Izerellie, Lovey Luker, I, Mister Bister, Little Lukey (his favorite), is FIVE!!! How can that be?  It seems like yesterday we found out we were expecting our little surprise.

Our sweet boy spent his birthday in the hospital with Caleb.  Not what he had planned, but he definitely made the best of it.  He didn't even want to go out to eat for his birthday dinner because Caleb couldn't come too.  He is such an awesome little brother.  When it comes to "going with the flow" in order to accommodate what needs to be done for Caleb, he his a pro.

His white trash cake was a perfect example. He really wanted a "Skylander" cake, "just like the kind Caleb had, but not with Packers on it." Aka dirt cake.  When I found out Caleb was going to be in the hospital, I knew we wouldn't be home in time for Isaac's birthday. And I didn't have time to make another dirt cake for him. Here's the white trash part....I still had a 9X9 dirt cake in the freezer from Caleb's birthday. I peeled off the "7" frosting and replaced it with the word "Skylanders." I put it in the fridge before Caleb and I went to the hospital.  Joel brought it today and Isaac LOVED it. It looked just like he wanted it to! HA! It tasted terrible, but he said it was good and that's all that matters. :)

 

 

I cannot believe that we will be registering him for Kindergarten in a couple weeks! He is SO ready for it. In fact, he asks me almost daily if he can go to school with Caleb yet. He LOVES school. And he loves his friends at school. His best friends are Jack and Gabe. Those three are inseparable at school. He also idolizes Ayden and Troy, his host-brothers. I am so glad that he has buddies.  But he also still likes to snuggle with his mama.  I hope that lasts forever.

 

He's a smartie.  He is super good at math, and often helps Caleb with his adding/subtracting homework.  He also continues to have a wild imagination.  He can take any object and start playing with it, turning it into an elaborate story.  He plays really good by himself, but also likes to play with others.  He LOVES games.  He would play board games all day if he could find someone to play with him.  He also likes puzzles and card games.  Since Christmas, he also has an obsession with Skylanders.  (He's no longer a baby...boooooo!)  He likes to play the Wii game with his "guys", but really likes to just play with them all day long without the TV too. 

He is very excited for the baseball season to start up again.  He's also into basketball and soccer.  I was not able to convince him to play soccer this year, but I know he will play t-ball again this summer.

Happy Birthday sweet Isaac.  We love you so much!

Toughest guy around

Caleb has shingles.  Again.  He started complaining that his "hair" hurt on Sunday night.  By Monday AM, he had a tiny cluster of blisters behind his ear.  By the afternoon it was confirmed and he was started on a high dose of anti-viral medication.  There was much talk about admitting him to the hospital because he's still on a big dose of steroids (and the shingles virus will thrive in this environment.)  So far he has avoided it, but this morning, he has a bunch more spots.  Boo!!

This time, they are mostly in his hair so he has a hard time lying down.  I am kicking myself for not making him get his haircut on Friday.  (Here is a pic from day 3)


But, this time around is NOTHING compared to the last time.  We caught it very early, instead of being misdiagnosed for 4 days. (Pic of day 4 last time)



He is so tough.  I have heard that shingles are extremely painful.  They wanted to prescribe a medication to help with the pain (neurontin), but he declined.  "I'm okay," he said.  I have been giving him Tylenol, but I doubt that even helps.

He has another doctor's appt later today.  Hopefully we will leave without a ticket to the hospital. 

House Update!

Our house is coming along!  There have been some hiccups the past couple weeks, so now looks like we will be in mid-March.  Can't wait!

The siding is all done.  The front still needs the pillars made, and stone put on the bottom of them. The cedar shake will be stained a bit darker.  They put in our well last week and are working on the septic.

 

The whole house is painted, thanks for CJ Painting and some awesome friends.  Isaac chose "Firecracker Red" for his "Dodge Ball" room. HA! I am so glad that they only painted it on one wall. The other three walls are grey. When the sun hits it, there is a pink reflection in the hallway. Caleb chose the same "Mindful Grey" that is in our bedroom. Out of all of the colors to pick, we all have gray in our rooms!

 

 

The counter tops are all in and they started staining our cabinets.

 

 

Fireplace is ready for the gigantic mantel.  It's huge, no joke.

 

 

For some reason, I don't have pictures of the bathrooms, but the tiling is all done and looks great.  They are finishing the cabinets this week and should be installing the floors next week.  Exciting stuff!

 

 

 

Is it summer yet?

Long overdue update.  I have been terrible at this blogging business.  I am sure this will get windy, but it's more for memory's sake than anything else.....

Isaac came down with croup and needed steroids on Jan 16th because his breathing was so bad.  The next AM, Caleb had a high fever and complained of pain when he took deep breaths.  (The same symptoms of when he had pneumonia.)  I took him to the doctor and he tested positive for Influenza A.  He was immediately started on Tamiflu and a "burst" of high dose steroids, and by that evening he was back to himself.  Friday, he had a good day and didn't have anymore fevers.  Saturday evening, he started having fevers again and started complaining of the pain while breathing.  After some calls, we were assuming it was still from influenza.  But by Sunday night, he was grunting when taking breaths, so off to the ER we went.

Thankfully the BMT doctor called ahead, so they were ready for us and got him right back to a room.  Once there, we waited and waited, until he started to hyperventilate and turn blue around his mouth.  That's one way to get things rolling!!  (Very scary for his mama though...)  The xray confirmed he had pneumonia again, on the opposite side of the pneumonia he had in December.  They immediately started antibiotics and said that he was going to be admitted to the BMT unit.

We didn't get settled in his room until 2AM, and people were in and out all morning.  By mid-afternoon we learned this he had bacteria in his blood.  Not good.  Many people die from this, and with the combo of influenza and pneumonia they were very worried for him.  They started another "big gun" antibiotic, and continued giving him nebulizers around the clock.

I got a call from Joel at 1 AM on Tuesday because Isaac was screaming that his ears hurt.  Joel's mom took him to the doctor later that morning, and he had a double ear infection.  I was so sad that I couldn't be there for him.  When C woke up on Tuesday, he seemed better but his blood pressure and blood sugar were really high.  Because of these two things, they decided to cut his steroids in half, hoping that his lungs would tolerate the change.  His wheezing did increase, but since he was comfortable and not breathing as fast they said that his lungs would just take a long time to heal.  The next 2 set of blood cultures came back negative, which means that the bacteria was cleared from his blood, which was awesome news.  However, since there was evidence of it when he was admitted, he would require 10 days of antibiotics.  They put a PICC line in and sent us home on Wednesday, which meant I had to hook him up 3 antibiotics three times a day at home.

He was checked in the BMT clinic on the 25th, and things were stable, although his lungs were still very junky sounding.  Again, they chalked it up to his lungs not being very good to begin with, him getting high doses of chemo, him getting pneumonia twice in a month on top of influenza...all things which cause major damage to them.  We continued the IV antibiotics, nebulizers, steroids, etc but by the 30th, his lungs continued to sound terrible (his 10th day of antibiotics).  They were concerned that the pneumonia hadn't cleared up.  A quick xray confirmed that his pneumonia did indeed clear up, and his lungs actually looked pretty good.  This didn't explain why they sounded so bad.  So after much discussion (without the input of his pulmonologist...another story in itself don't get me started), it was decided that they wanted to double his steroids again.  Boo!

His lungs sure love steroids, because within 1.5 days, his lungs sounded clear again.  But, now we are dealing with the effects of high dose steroids.  Caleb is super puffy, eating everything in sight (never thought I would complain about that), and moody.  He's depressed that he looks different, and spends a lot of time in the nurses office at school, because he doesn't want kids making fun of him.  He's insisted that no one has, but he is very self conscious about it.  Poor buddy! 

Since his pulmonologist didn't get back to BMT or me in over 2 weeks, I called her office and spoke with one of the nurses this week.  (We don't have an appointment with this doc until the 13th, another story, don't get me started)  Weaning his steroids is going to be a LONG process, and since he's doing well right now, I wanted to start weaning them now instead of waiting another week.  If he still needs that dose, fine.  But I wanted to at least TRY to start tapering them.  Steroids are not benign, and can have lasting effects on the body.  It makes me CRAZY that no one seems to mind that fact, and no one wants to take charge of getting him off of them.  Anyway, the lung doc said I could try to decrease one of his doses.  So far, he has tolerated decreasing the night time dose.  Hoping that they decrease the morning dose on Wednesday.

Praying that Caleb's lungs continue to heal and that we can all stay healthy!!  Thank you for your continued prayers!