Surgery Update!

It was hard for him to get comfy because he couldn't rest his head on the leftside and he was all hooked up to IV lines and drains.





Tami and Kevin were so sweet. They drove over to Detriot to see us in the hospital. It was a long drive from Holland Michigan where they live. They brought the 3 boys Kyler, Jordan and Caleb. Tami's boys made this darling build-a-bear dressed like a doctor. Ethan loves it! He totally knew what to do with the stethascope. He put it around his neck and put the other end on his chest. Tami also brought me a bunch of fashion magazines to help pass the time.

I finally got Ethan to sleep at 12:00am and then I fell asleep. Travis and I would trade off sleeping at the Ronald McDonald house for 4hrs. at a time. He would sleep 10:00pm-2:00am and then I would sleep from 3:00am-7:00am. We were pretty exhausted but we thought it was very important to be with him at all times. Mistakes are bound to happen when they are relaying information from Surgeon to Resident to PA to Nurse. Some friends we met at the hospital who's baby had the same procedure a week before Ethan. Told us that someone forgot to give her the anti-seizures meds for 24hrs. and she had 5 seizures. We closely monitored every single thing that was given to Ethan.

After the EVD fiasco things started to get better and better each day! I don't know if you can see it but Travis is a little teary eyed in this picture. It was just such a relief to see Ethan acting like himself and feeling better. We spent a lot of time counting our blessing and thanking Heavenly Father for them. Speaking of blessing thank you to all our families for the love, support, fasting, and prayers! We are so fortunate to have so many people who love us.

Here's a good view of the JP drain

No one likes a frowny face!

This is the day they took out the EVD. This was the worst part of the whole experience if you are easily grossed out you may want to skip this part.

The EVD is the drain that goes directly into the crainial cavity. I don't know why, but they let PA's (physicians assistant) remove the drain. If everything goes the way it is supposed to; you just gently pull the drain out. The surgeon has left to long sutures, they call purse strings. After the drain is out you just tie the strings tightly to close the hole and that's that. We saw them remove JP drain the day before and it was a sinch.

Well, everything did not go the way it is supposed to. The idiot PA started to pull the drain out and we realized it was tethered to the purse strings. So me and another PA were trying to hold Ethan down as she kept pulling it out and then pulling it back in as she pulled on the string.

We could see that the suture went right through the end of drain. She could not remove the drain without cutting the purse string. We told her she needed to cut the string but she misunderstood and cut off the drain. Leaving a little stub still in his head.

At this point Ethan's head is gushing spinal fluid from the little stub of hose she left inside. She tries holding her finger over it and says "What should I do?" The other PA says "You have to get that drain out." So she starts digging around with tweezers and she can't get a hold of it because she keeps grabbing his skin. Meanwhile he is still leaking CFS he's totally screaming and we are holding him down. She says to me "The reason he's losing so much fluid is because he's screaming and that makes more pressure in the brain. YOU THINK! I was so angry, and scared I started sweating like crazy and getting dizzy. I was about to pass-out. When she finally got the drain out she put her finger back over the hole. Then, because she had cut the purse strings she had to do two stiches to close the hole. That's 4 times of poking through his skin with NO anesthia. We just had to hold him down!

Afterwards I asked the PA, "how can you be absolutely sure you got all the drain out?" She said she was sure, but me and the other PA were not going to take her word for it. We decided to do an X-ray to make sure. They gave Ethan some morphine to knock him out after the traumatic event.

When we went down to do the X-ray Ethan looked up at me with the palest, sickest, look on his face and then vomited all over us. Poor little baby. I'm sure losing all that spinal fluid made him totally nauseaous. It also made him feel like crap for about 12 hrs.

This is him sleeping after the drain was out. Unfortunately Travis had gone back to the Ronald Mcdonald house to sleep so I was all bymyself. After Ethan fell asleep I just held him and cried and cried.

The sutures in the back are from the two drains that Ethan had. If you look at the earlier pictures you can see a red drain (called a Jackson Pratt drain) and a white drain (called an EVD). The JP drain was between the skin and the skull and it drained blood and fluid. It has a bulb on the end and it filled with fluid every 4-6hrs. I can't imangine how swollen his head would have been without that drain. The EVD went directly through the skull and into the crainial cavity. It's purpose was to drain cerebral/spinal fluid (CSF) so that there would not be too much pressure in the brain. The EVD could also give a pressure reading so they could monitor it. I can't believe what a refined process this has become.

Dr. Sood (The Neurosurgeon) told us that before they started using the JP drains, kids head's would swell up like a balloon. I've seen pictures of kids following brain surgery and their head is as big as a pumpkin and their eyes are swollen shut. Ethan had almost no swelling as you can see from the pictures.

The EVD serves to drain the bloody cerebral/spinal fluid so that the body can produce new, clean, CSF. Before they started using EVD's everyone would get a super high fever as the body tried to clean the CSF. Obviously super high fevers are very bad for seizure prone kids. Ethan never once had fever!

We feel so blessed that we were able to benefit from all this new medical technology. We think Ethan received the very best care available. I know that it was Heavenly Father who lead us to Dr. Sood and Dr. Chugani. We couldn't have asked for a better result.

Baby On Drugs!

They gave Ethan Morphine for the pain and he felt really gooooooooood! He was totally stoned that's why we eventually went to half doses.

Kissing Monkey

Here's Ethan hugging his favorite toy Monkey!

The night before we were discharged he pulled his IV out again and the nurse said they would have to put in another one. Trav and I thought this was crazy because we were leaving in the morning. But the nurse was insisting until finally Travis said, "I'm am refusing to allow anyone to put another IV in." The nurse was very nice and said okay I'll make a note of it in his chart.

Way to go Trav! Another time we told them we only wanted Ethan to have a 1/2 dose of morphine and the nurse said she couldn't do that because that's not the way it was written. We knew that she could because every other nurse had done it. Travis said go ahead and put the full dose on the pump and I'll stop it when it's half done. She finally agreed. Sometimes you need to be a little assertive when it comes to your sweet baby.

During the 8 days that Ethan was in the hospital he had 5 different IV sites. "Why so many?" you might ask. He kept pulling them out! When he was still in PICU I lifted up his blanket and saw a pool of blood at his ankle. He had kicked out his IV and he was bleeding everywhere.

In this picture he pulled out his arm IV and it was bleeding like a fountain all over us.

He started using his right hand when they put an IV in his left hand and taped it to a small board. This really made him angry! But in retrospectic it is lucky that they did. Having his left hand immoblized forced him to use his right. It was physical therapy and it worked like a charm! He just keeps getting better and better at using his right hand and we expect him to fully recover the use of it.

At first Ethan couldn't use his right hand (the sensory strip was gone). I think it felt numb to him because the first couple of days he kept biting it softly and pinching it as if he couldn't figure out what was going on. It was so cute! You could just see in his eyes that he was thinking what's going on with this arm.

As soon as Ethan woke up he smiled at us and pig snorted and we could see that he had NO facial paralysis. What a blessing! We think that he had some facial paralysis about a year ago. He had a pretty assymetrical smile, but then it got better. Now we think that his brain probably reorganized and the right side took over the function of the right side of his face (it is supposed to control the leftside. Each hemisphere controls the opposite side of the body). So when they removed the motor strip it didn't matter because it was already useless to him. The brain is sooooooo incredible.

The surgery lasted about 8hrs. But we didn't see him from 8:30am until 6:00pm. The surgeon was very thoughtful and he had someone call and give us updates every hour. Each time they called they told us that everything was going perfectly.

At one point Dr. Chugani (head of Pediatric Neurology) and Dr. Asano (epilepsy specialist) came to the waiting room and said they needed to speak with us privately. Of course this terrified us. It can never be good news when you need to go in a private room to talk. They told us that the motor and sensory strip that control Ethan's face and the sensory strip for his right arm needed to be removed. This would mean Ethan would have a facial droop/paralysis that could last several months. They said that without the sensory strip for his arm it would feel numb until his brain figures out that it is still a part of his body. We said yes, remove what ever you need to and we will deal with the consequences.Thursday October 30, 2008. This is in the PICU right after he came out of surgery.

5 minutes before the plane landed he fell asleep with his sucker in his mouth. By the way everyone was more than nice to us on the plane ride home.

The plane ride out to Michigan was the worst ever! Ethan was awake and out of control the whole 3.5 hrs. We tried everything to keep him quiet but it was torture. The flight attendant was getting annoyed and she said, "I bet this makes you guys not want any more kids." I said, "Too late! We have 3 more at home and they're angels." Then we told her we were going to Michigan for brain surgery, and that his anti-convulsant medication makes him aggressive. That shut her up quick and she was very accomadating the rest of the flight. Ethan finally fell asleep with 5 minutes left in the flight.