The Amazing Owen
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Michelle,

So sorry to hear that Owen has had to have another surgery. I pray that thing continue to improve with this one nad he is home and his ahppy self again soon. I think of you all often and wish the best for you.

Love,
Leisa
Comment By Leisa LeFew At 1/14/2009 4:50 PM
Wow Michelle, it sounds as if you've had a couple of crazy days!! So sorry I didn't know about it till now. We're praying that Owen will get better and that he won't need any more surgery. These little ones seem to all want to go to the hospital in streaks! Crazy kids! Give Owen kisses for us!
Comment By Jill At 1/14/2009 4:52 PM
Hey Michelle. orry to hear about this we are thinking of you and hurry home.

Susan
Comment By susan heinze At 1/14/2009 5:28 PM

Original Entry:
Still in the hospital

Hi All!

I have computer access finally. Daddy brought down the computer so that I am now connected to the world again! A big thanks goes out to my brother for blogging while I was disconnected!

When last I blogged on Sunday I had explained that Owen hadn't been acting right so I had made an appointment for a CT on Monday because he hadn't been acting right and we had had a detour to the ER on Friday because he had thrown up in the car. The ER radiologists had said that they thought the CT scan was unchanged from the last one so we were just headed down for confirmation on Monday from his regular neurosurgeon.

As it turns out, it was not to be just a quick visit. When his neurosurgeon, Dr. Grant, looked at the CT scan he felt that the ventricles had definitely begun to enlarge. They hadn't gone really far yet, but they were definitely headed in the wrong direction and it was time to do something about the shunt. Either the shunt was failing, or the pressure setting of 70 mm H20 was too high now that the big fontanelle (soft spot) in front had closed up in the last few months.

While the fontanelle is open it acts as a pressure relief valve. The fluid can press up into this space without pushing on the brain and it causes no problems. However, once it is closed this relief valve doesn't exist anymore and so a pressure setting that had been fine for two years may suddenly be too high. This is one of the biggest arguments for programmable shunts in infants, because it is not unusual for them to need a different pressure setting as their head fuses together. We had taken out Owen's programmable shunt to replace it with a fixed one so that the magnets from his cochlear implant would not be able to interfere with his shunt. So, a pressure change requires surgery.

By this point Owen was almost inconsolable. He was definitely in pain. Dr. Grant had us admitted to the hospital on Monday afternoon. If I hadn't fed Owen lunch he could have had surgery on Monday, but unfortunately he had just eaten before we saw Dr. Grant so we had to wait until Tuesday. Tuesday was Dr. Fuchs' (the other pediatric neurosurgeon here at Duke) day for surgery, so we got a slot with him. Dr. Grant offered to do the surgery after his clinic hours, but that would have meant doing the surgery after two kids with shunt infections had been operated on, and that increases the risk of Owen getting an infection. We've been down that road before and had no desire to do it again.

So on Tuesday Dr. Fuchs went in to see what was happening. If he went in and saw that the pressure was at 70 - which is what it should be - then he would know that the shunt was functioning and 70 was too high. If he went in and the pressure was above 70 then he would know that the shunt was failing and 70 might still be OK.

As it turns out, the pressure was right at 70. The catethers were both flowing, so the shunt system had not failed. This meant that 70 was just too high now that his head was becoming solid. So Dr. Fuch's put in a new shunt whose pressure is 40 mm H2O. He also replaced the catheter that goes into his brain because he thought that maybe it didn't flow quite as freely as the one going down into his tummy.

That was all yesterday. By the time Owen was back to his room he was in a great mood. He was the happiest he had been in ages. Unfortunately it didn't last. After two hours of eating a great dinner and playing in a high chair, he had a meltdown. It took an hour and a half and a lot of oxycodone to get him to calm down. But we figured he had had a long day and it that was it.

He slept through the night just fine - keeping the oxycodone flowing to make sure he got a good night's sleep.

At 6:30 this morning he woke up and was not happy. I figured he was just cranky because he was hungry. Owen believes that food should magically appear - fully prepared and ready to eat - the moment that his eyes open in the morning. So it is not unusual for him to be cranky. Dr. Fuchs came by while I was feeding him and we just agreed to wait until after he ate to see what his mood was. Unfortunately his mood did not improve. He was kicking and angry and upset for most of the morning. He ate two granola bars but I couldn't get him to drink anything. His throat is pretty sore from the breathing tube, so that might be why he doesn't want to drink. He is still getting IV fluids so he isn't thirsty and may not be motivated enough to drink while his throat is sore.

By the time Dr. Grant came in to check on him he was in a pretty good fit. Even with the oxycodone he was still kicking and thrashing around. So they canceled our departure for today to see if they couldn't figure out why he is so upset. Dr. Grant recommenced his Milk of Magnesia because it has been three days without a poo again, just in case that is what is causing him pain. He was pretty upset until lunchtime. At that point a friend that I had met through this website was at Duke to get a second cord blood infusion for her son came to visit. They live in Idaho so I haven't seen them in almost a year and a half, when they came for the first infusion. She and her son Jameson came in for a visit. Jameson is 18 months old and was just the distraction that Owen needed. While they were here we were able to put Owen in his high chair and he and Jameson sat and ate Cheerios and Jello. Owen was actually in a good mood for most of the time that they were here. He did start to melt down just before they left, but at least he spent a good hour up and happy. Then he went to sleep and took a good nap. He is just waking up and hopefully he will be in a good mood.

So that's where we are now. Hopefully his mood will improve and it's just that he was sore today. We'll keep you posted!

 
 
 



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