Saturday, February 21, 2015

The Surgery

On the iPod "Love Runs Out" by: OneRepublic

So I thought I'd blog about today because well it's the easiest way to get information to everyone! 

The day started out pretty uneventful. We let Levi sleep in because we knew it would be a long day. Our surgeon gave us the option of having Levi's surgery done in the hospital or the surgery center but urged us to have it done at the surgery center because it's a more controlled environment... ie: less patients, less sickness, and more one on one attention. We all decided the surgery center was the way to go especially with Levi's IgA issues... The last thing we needed is Levi to pick up a super bug while we are trying to rid him of one! 

Anyways, I dropped Lu off at my moms and came back to the house. Mike and I were able to spend some quality time with Levi getting him up and dressed. We explained to Levi what was in store for the day and he seemed ok with it. 

We arrived at the surgery center at 11:30. It was very nice! There were lots of climbing toys which allowed Levi to burn off some energy! We were taken back to pre-op at noon and met with the anesthesiologist and the surgeon. And at this point knew things were running a tad behind. Levi was given this magical stuff called silly juice and let me tell you he could have cared less what time it was!  They finally took him back at a quarter to 2. 

The surgery itself went well! He did great under anesthesia and it took exactly 2 hours just as planned. There was massive infection especially on his right side. They are sending it to be cultured to make sure it is being treated right. They drilled holes into the sinus cavities and shaved the bone a bit.

The adenoids were huge and obviously needed to come out. The doctor said that luckily the high dose steroid that Levi has been on the last week did its job to control some of the inflammation so that they could have clearance to work in such a tiny space! 

We were absolutely thrilled that we made the choice to have this all done knowing now that obviously he really needed it. Everybody kept telling us that no doubt this would change his life.

Recovery was a little harder than expected. Levi was the only patient there at this point and received amazing care but he had a really hard time waking up. Not because he woke up angry but more because he just really wasn't waking up!  After about 2 hours he finally came around enough to go home. 

So at 6pm we were finally on our way home. Levi has been out most of the night. We were  able to get him up to eat.  It took a couple of tries because he kept falling asleep at the table but in normal Levi style the 4 boxes of Popsicles I bought were kicked to the curb and instead he ate a half of a baked chicken and 4 rolls! (many thanks to the Bock/Stoutmeyer family for bringing us dinner) We did curb the heavy meds a little because he is so out of it. We are still treating the pain but the narcotics are just too much at this point and we obviously don't want it to effect his breathing. He is getting pretty swollen which he is not thrilled about but other than that he looks pretty good! 

Luckily I was able to sleep from about 8:30-11 tonight and my amazing mom took luca for the night so that we can focus on Levi. I'm thinking I will be up most of the night just watching him breathe lol. 

Anyways that's all I have for now. The messages, texts, and calls have honestly been wonderful. Just knowing that everyone is thinking of and praying for our sweet boy means everything to us. And to our family and close friends that have pushed me to accept some help over the next couple of weeks... Thank you! Sometimes it is hard for me to accept help... It's an issue... But the amount of relief that I have knowing that we will have some much needed support so that mike and I can focus on Levi is pretty amazing.

Talk soon
Xoxo chef a

Thursday, February 19, 2015


On the iPod "Thinking Out Loud" by: Ed Sheeran

Nervous energy.... 
From the time I can remember I've been a leg shaker... My leg can shake about a mile a minute. Sometimes it goes so fast that those close to me can hear it shaking...
Tonight it might even be going two miles an minute...

Tomorrow Levi is having surgery...
He has been sick for awhile now. It started kind of quietly when he was 2. We brushed it off as allergies. Around 2 1/2 we added asthma to the mix which no one even thought was weird since my brother Adam and I had terrible childhood asthma (I actually spent most of the preteen years on steroids.) So when the hives started around age three we took note but still just treated the symptoms and went along our merry way. 

Unfortunately, in the last year things have gotten worse... Hives every couple of months turned into hives every other day. Once we got the hives under control the asthma would flare up. Most days he is very tired and in the mornings he feels awful... Levi has been on some sort of antibiotic for the last 14 weeks and nothing has made a dent. He feels terrible and he somehow pushes on because well honestly I'm not sure he knows that the discomfort he feels is actually not normal. 
Since September of this year we have been to 16 doctors appointments, Levi has had 12 tubes of blood taken (which if you'd ask him, he would really like returned), 6 swab cultures, ct scans. X-rays, and enough poking and prodding to last a lifetime, but thankfully we finally have some answers..

Levi has an IgA deficiency.  In a nutshell it means that his immune system is not producing enough of the antibodies that help him fight some infections. In Levi case, it is a horrible sinus infection that has pretty much taken up shop with no desire to leave and is very resistant. 

So tomorrow Levi is having a major surgery to create drains in his sinuses and they will try to remove as much infection as they can while they are in there. They are also going to take his adenoids! 

I'm a nervous wreck... We would really love all of your prayers not only for a smooth surgery tomorrow but also some prayers for his body to start working hard to fight back. We need all of the antibodies to amp up and give him an immune system so that he can focus of filling up his brain with knowledge instead of infection! So please think good thoughts and send him as much juju as possible!!

Xoxo chef a