Monday, August 13, 2012

Happy Birthday Little Star!

I can't believe it's been 2 years since Nikolas was born....

Honestly, it feels like he's been on this earth much longer. I feel like he's been through so much, much more than most people will go through in their lifetimes. And with so much grace and joy as he still continues to smile through it all. I just wish it didn't include so much pain, but I think that God made Nikolas special so that he can handle it much better than anyone else would be able to.

Even though the past two years have brought many ups and downs, Nikolas has taught me so much.

He has taught me how to love someone, unconditionally, not expecting anything in return. He has taught me that even though the world can be full of so many terrible things that it's still okay to smile. And to smile and love every moment because every moment is so precious.  He has taught me to enjoy the little things, the things that really matter. He has taught me to care for someone and to push to get whatever he really needs done to actually get done, especially in hospitals and with doctors and nurses.

I love this little boy more than I can ever explain. I think any mother could say that about their child but somehow, I feel that my love for Nikolas goes beyond that. That my heart has expanded so much more than I ever thought for that little boy....I love my 3 other children just as much but with Nikolas, it's different somehow.

Nikolas is still having a hard time recovering. They extubated him on Wednesday the 8th. But he was having a hard time breathing and his oxygen levels kept dropping to dangerously low levels so they tried to put him on a cpap/bipap machine that uses a mask to blow oxygen into his lungs. He did okay on that for a couple days so they were able to transition him to a high flow nasal canula. But Friday evening he started having a harder and harder time breathing and his lungs sounded very course. His chest X-rays also started to look worse and worse...his lungs were slowly filling up with fluid.

And by Saturday morning his right lung had collapsed and he had to be reintubated for the third time.

My heart broke as I watched his limp body on the bed, trying to get a tube down his throat so he could breath. The first one they tried was too large, it was the same size they had used during the last intubation and surgery but his airway was so swollen that it wouldn't fit down so they had to use half a size smaller.  Nikolas has always had issues with being intubated. Either with stridor or requiring oxygen for 5-6 days after being intubated. His epiglottis has been described as floppy and very narrow and it may be possible that he somehow reacts to the plastic on the tube.

But at this point we don't know what to do. We have tried multiple attempts at extubating, including using steroids and breathing treatments but his little body cannot handle working so hard to breath...especially after such a major surgery. We need to consult with pulmonology and ENT to figure out how to get him off the vent.
And hopefully soon because mechanical ventilation actually can cause the lungs to collapse so the longer he is on the vent the harder it will be to get him off.

There is talk about transporting him back to Children's Mercy via helicopter, as soon as Wednesday. Which would be so helpful to myself, it's hard to be away from Joe, Brianna and Benjamin. And Maya (also Aunt Yaya) has been so gracious to come with us to help....a lot..... and I know she needs to get back home to get things done as well. But at the same time I don't want to make a bad choice just because I want to get home.

St. Jude is amazing, it really is but since they are so specialized they may not see many kiddos like Nikolas and not have the experience in helping him the way that a larger hospital like Children's would.

 We will see what the next few days bring us and we will just continue to pray that Nicky's little body will heal faster than ever possible!

 Carsen wants those tubes out!

This was from the night before surgery...enjoying some chocolate!!

Birthday cake from the hospital :o)

Fun birthday balloons!

More presents and balloon from the hospital....they are really too sweet!

Aunt Yaya loving on Nicky

Sunday, August 5, 2012

A Miracle and Recovering

Sorry for the late posting. I've been able to update Nick's Facebook page, Brighten the Light for Nicky, more constantly but because of internet issues here at the hospital it's hard for me to be able to post to his blog.
Nick had a very full week of appointments with many specialists, from anesthesia to nephrology to neurology and of course oncology. The doctors are very nice and really seem to want to get to know him so they can take care of him better overall.
Nick also had many tests. He had a CT of his abdomen, an ECHO, an EKG, multiple lab draws and urinalysis'.
Nick's ANC (absolute neutrophil count, when it's lower he can get sick very easily) on Monday and Tuesday was 400 even. He his ANC had to be over 500 for him to be able to have the surgery.

We prayed and we asked many others to pray with us that it would reach 500 so he could have the surgery.

They rechecked it on Thursday. It was 500 exactly! I could barely believe it! God is so amazing!

Then the surgeon went overt everything with us, how he thought he was going to be able to remove them and what could possibly happen if he couldn't get all the tumors from each kidney.

Nick had surgery on Friday. Dr. Davidoff blocked the whole day for his surgery, knowing it would be difficult and extensive.

Nick went back about 7:30 for anesthesia but they didn't actually start the surgery until around 10 a.m. They put in an epidural and tried to put an arterial line in and they stuck him probably about 20 times, including trying his femoral artery in his groin area. But could not get it. Thankfully, Nick was out and didn't feel it, but he has the marks to show for it.

The surgery took a total of about 8 hours. Then the surgeon came out to talk to us.

He was able to get all of the tumors!! Amazing! Praise God!

There is always some microscopic cells left which will be treated with chemotherapy and possibly radiation but he was able to remove them! He said it was very difficult but he was happy with the results.

Nick had to be kept intubated and sedated for the rest of the day and they were able to extubate him the next morning. He is also very swollen, all over. He can't even open his eyes they are so swollen. When they do a surgery like this, and remove half of each kidney, they push fluids like crazy trying to make the kidney's work hard to keep them functioning properly.

He has had issues with pain and keeping his oxygen up since.

Nick's sats dropped really low, into the 60's. He was coughing and seemed to be getting some stuff up so this other nurse comes in and started to suction him but she used an adult size suction tube and she must have stuck it way back in his throat because he started to bleed like crazy. Normally if I suction him at home he might bleed a little if I'm not careful, because his palate is unrepaired it leaves a lot more of his throat exposed than normal. Well this nurse was not being careful and he's had more and more issues since. It obviously caused swelling and a lot of irritation. The doctor was very concerned because of all the blood.

Well he keeps desaturating which requires him to be bagged, which is just more pressurized oxygen which pushes more air into his lungs. He does not like masks or anything on his face for that matter and of course he just keeps knocking things away because who wants air blowing in their face?

And this morning his sats dropped really low again, into the 40's, and he was having a hard time recovering. We tried many different things to try and keep his oxygen levels up. 

But they had to reintubate him. This is horrible. This is about 6 steps back. Being intubated is very hard for Nick and to get as far as we did and now we're going to have to do it all over again is gut wrenching.

He also is requiring plasma and blood. 

My poor baby. I knew this surgery would be hard but this is far worse than I expected. We haven't even gotten to see him open his eyes yet and now he's sedated again. 

Please pray for him, pray that he can heal quickly and recover from this difficult surgery.