June 19, 2012

Good Evening!

 I hope you all had a wonderful father's day weekend. Mike and I would like to wish all of the dads a very happy fathers day.  We took Nathan home this past Friday and enjoyed a wonderful weekend together at home.  It was so nice to be in our own beds and watch Nathan play with his toys.  We had a quiet dinner together to celebrate Mike's first fathers day. It was a great day.

Unfortunately, I am writing this update from the hospital.  We were admitted again last night and we are not sure how long we will be here.  Nathan became very fussy and started vomiting his feedings yesterday.  The oncology doctors had us come to the emergency room last night just to check on his feeding tube.  In the process, they started to become concerned about Nathan developing hydrocephalus, which is swelling in the brain.  They did a CT scan in the ER which led then to order an MRI.  Nathan was put under general anesthesia last night at 2am for the MRI.  He finished around 4:30am and recovered well from the anesthesia. Nathan did much better than mom and dad who are running on very little sleep and worried about our little man in a deserted waiting room. Luckily, the surgeon does not think Nathan has significant swelling at this time, so he is ok just watching it.  They needed to role out several other infections, so around 11:30am Nathan was put under general anesthesia again so they could do a spinal tap.  Later in the day he became extremely fussy, spiked a fever, his heart rate was very high, and he had some swelling in his face.  We believe there is an infection, but they are unsure of the source.  They did blood work, urine samples, and a chest x-ray.  Needless to say, Nathan has gone through hell and back today.  We are still waiting on the cultures and hope to have more answers tomorrow.  He is still not tolerating the feeding very well, so they stopped all feeds for today and we will try again tomorrow.

We are doing our best to stay positive and be thankful for what Nathan is able to do.  It is horrible to see him in so much pain and not know what is causing it.  He is calm now and resting, so we hope it continues.  Just when you think he can't handle any more, he proves us wrong. He went through so much today and instead of crying all night, he bounced back and was playing with the mobile, waving hello, and calling everyone dada.  Just when we think we can't take anymore, he smiles at us and it gives us the energy to keep going.  He is our hero.  I never imagined a little 16 pound boy could teach me so much in one day.  

Well here goes my normal request....prayers.  Your prayers have been answered thus far and we hope the big guy upstairs isn't sick of us yet. Nathan needs all the help he can get to get over this hurdle.  We pray that the infection responds to medication and he is able to start eating again.  We know Nathan is a fighter and will get through this, but we want it to be quick and painless for him.  He is our little guy and we want to get him home again soon.

We are so thankful for each of you.  We appreciate the offers to cook meals and visit, but at this time we just need to sleep as much as we can and get him better.  We know you would do anything for us and we can not thank you enough.  You are our support system and there is no way we could get through this without you.  Thank you for everything you have done.  We love reading all of the cards and emails.  We will continue to fight and stay strong for Nathan.  He is doing his part, so we have to keep doing ours.

Love,

Beth and Mike