April 24, 2007

Post Surgery Update

You would think that after going through this routine a couple of times it would get easier, but it doesn't. It could be because I have grown so much closer to Niklas since he came home, or it could be that I can't stand seeing the little guy endure so much torture. Nevertheless, Mott Children's Hospital has a way of putting your life in perspective. Even though it's terrible that Niklas has to go through all of this, his experience really pales in comparison to the hurdles that so many other children face while they are there. I thank God that there are people who work at these places because I can't comprehend how someone can stand to see children in pain each day.

Niklas's surgery went well. It turned out that his shunt valve was clogged with protein and not functioning properly. While they were in there, they decided to replace the valve with a new one that can be adjusted without surgery via a magnetic remote control. This means that the neurosurgery dept. can adjust the pressure settings of the valve without making an incision, which is truly amazing.

After the surgery was over, we met Niklas in the surgical recovery room. It was heartbreaking to see him laying there with the dressings on his head, yet being such a little man about it. When Greta and I started talking to him, he recognized our voices and let out little whimpers in response. As a parent, you wish that you could just trade places with them and make it all go away. We got him settled in his hospital room, which is now a regular hospital room and not the NICU (he is, after all, a 4 month old now). Since he was not going to have the level of attention that he would get in the NICU, I decided to go home, pack a bag and come back to sleep there with him in his room. Around 8:00 p.m., he decided that he was no longer going to allow us to put the oxygen on his face. Every time that I tried, he pulled it back off so I eventually decided to give up. Amazingly, his oxygen saturation was 100% all night long which is a strong indication that he will be getting off of it permanently at our pulmonology appointent. this Friday.

Niklas and I shared the room with another couple and their little boy, and even though Niklas was a complete Angel, I did not get a single minute of sleep last night. The other little boy's dad snored so loud that I was convinced that there were bear mating behind the curtain. It was a long night, and I welcomed the moment when we were finally discharged. The neurosurgeon told me that Niklas's shunt is now programmed for a very low resistance setting. This means that more fluid might drain than is necessary and that we may see his fontanelle collapse a bit. At our follow up appointment next week they will probably adjust it, but I was told to bring him in if the top of his head resembled an ash tray. An ash tray? You have to wonder where that analogy came from. Did someone actually consider using their kid's head for that?


Anonymous said...

Yay Niklas-our prayers were answered! From here on out we will continue to pray for a safe and speedy recovery and that these surgeries become few and far between. I also heard a certain little girl was told she needs to watch her calorie intake-I love it!

Auntie Sarah

Anonymous said...

Hey guys, I look at your website whenever I am at work! I love seeing new pics and reading updates. I remember the very first night in the NICU, they have come a long way are and truly amazing. That is why I love my job, it is extremely rewarding. My prayers go out to Niklas and to all of you. Kepp posting pics, we all love them here.

Emily(Respiratory Therapist working night of their birth)

Anonymous said...

Just read the blog to my mom. We are so happy you are home. The whole time I was reading it, my mom kept saying, "I know how they feel." Steve was really sick as a baby - diagnosed with CF at 3 months. She truly feels for you with all your doctor visits. We are so thankful all went so well with the surgery! Lisa D.

Anonymous said...

Great news for Niklas..... he looks so peaceful in that picture with those chubby cheeks!

Love you,

Aunt Emily and Uncle Ben

Kevin said...

it's hard to believe how much that little guy has been through already. he is an inspiration. as are you and greta. i remain impressed with the details of your blog and your positive attitude. it goes a long way. i think you should get the remote from the dr so when he is older and is acting up you can give him a quick blast to keep him in line. niklas is my new hero... and i mean that sincerely.

Carrie Socia said...

We have been thinking about all of you & most certainly we have been saying our prayers. Glad that things with Niklas went as planned & that what they suspected was the case.

The picture of all of you in Black & White is just beautiful... thanks for sharing!

Hugs & Kisses to all!

Anonymous said...

I am so happy our prayers are answered yet again. I just hope that Niklas can have some peace in his life for awhile. Hopefully everyone will be oxygen free come soon.

Continued love and prayers for all of you.

Aunt Nancy

Hanselman Family said...

PRAISE THE LORD! There is power in our many prayers!

Anything else you’d like Doris to pray about while sitting in her Prayer Chair?

Anonymous said...

Amen Amen! Another win for home team. Great job Niklas...He has the strength of a Lion!