***SUPER LONG POST***YOU HAVE BEEN WARNED***
September 14 was suppose to be a busy Saturday. I was feeling pretty confident and ready to head out into the world and attend a baby shower for a friend. Scott and Milo were going to go on a hike with the scouts. Our 3 younger kids were going to someones house for the day and Jaime and Alix were going to go earn some money cleaning house for a friend.
The Scout hike got cancelled. That was good. One less thing to worry about. The little kids headed off to play and I got ready for the baby shower. I was so excited to see some friends I hadn’t seen in a while, knowing they would not care about my droopy face and funny talking. I guess I just didn’t take into account that the host of the baby shower (who I didn’t know) was going to serve a sit down lunch. WHAT?? I still couldn’t eat or drink like a normal person. I was doing better with eating but it was like watching a baby feed themselves, not a pretty sight when it’s an adult. All my selfish thoughts came rushing back to me as I entered the house and I panicked. I’ve never felt that way in a social situation before but I HAD to get out.
Lucky for me (?) Scott called and said that Milo was not doing well. The headache he had that morning had not gone away and was actually worse. He wanted to contact Milo’s neurosurgeon, Dr. Sun, to see if we should come in and have his shunt looked at. I had that information in my cell phone, that was why he was calling. But it was the perfect excuse to get out of there.
I cried the whole way home from the shower. Embarrassed by my reaction to the situation and even more angry at myself that I’m so self conscious. Really?? This just didn’t seem in line with my normal personality. And now Milo was not well. How was I going to take care of Milo while I was still so fragile??
Once I got home I was able to make contact with the oncall neurosurgeon; Dr. Sun was out of the country. The oncall doctor agreed with me that perhaps Milo’s shunt was not working well. We determined this because on September 5 his shunt was dialed down, meaning less fluid was draining from his brain. Dr. Sun wanted to see if Milo’s body would be able to handle the shunt doing less. So the on call doctor told me to come to the hospital. But because it was a Saturday we had to go to the E.R. and he’d come and see us in there and do the shunt adjustment and then we could come back the next week and have Dr. Sun determine what he wanted to do long term.
So Scott and I decided it would be better for me to go to the E.R. instead of staying home and feeling sorry for myself. Once at the E.R. they asked Milo about his headache and he told them his neck hurt too. He was thrashing with pain and barely able to open his eyes or talk. They took him to a bed right away and gave him some pretty powerful drugs. I kept insisting that the neurosurgeon just needed to be called and all this would be taken care of. But these nurses and doctors deal with this all the time and kindly ignored me. They realized, unlike me, that this was more than just a headache caused by a shunt. This was something that required tests and drugs.
Once Milo was in an ER room his temperature spiked and he threw up. They took Milo into a CT and MRI. They took a lot of blood samples from him. They tapped his shunt (that means they stuck a needle into his shunt and drew some fluid out of it). He was really out of it by this point from the morphine they had given him so none of this was too painful for him.
It turns out that the CT and MRI showed that his shunt was fine and that the fluid in his brain was at normal levels, but his white blood count was through the roof. Way too high. So, having really high white blood count, a headache and a neck ache, they deduced that Milo must have Meningitis. They could not make an official diagnosis right away because it takes 12-24 hours to get preliminary tests back and 48-72 hours before they get good test results. But they didn’t have time to wait for tests results because then it might be too late. So they needed to start him on antibiotics now and wait for the tests results. 4 different antibiotics because if it was Meningitis, they didn’t know which strain and so they wanted to cover all their bases.
Before I knew it they were whisking Milo upstairs to ICU. At this point my headache was so bad that I couldn’t really follow what was going on or why they were doing what they were doing. I had somehow missed that there was nothing wrong with the shunt and was confused that they were taking him up to ICU. Once in the ICU the doctor came in to get the report and was talking to me and I guess I looked like an idiot (of course I did, half my face was dropping and I slurred and drooled) and said “Do you know why your son is here?” I admitted that I didn’t and he said it was because he had Meningitis. Well, the way he said it I realized it was something serious and began to worry. I really had no idea what Meningitis was but figured it was bad.
That night after a an amazing blessing from his dad and Dave Bennett promising him he’d recover and a nice big dose of morphine and sleeping medicine for Milo and my bed of two chairs and a blanket set up for me, I melted. I cried. My head was pounding. My face hurt. I was hungry, tired and so worried about Milo I didn’t know what to do. So crying seemed like the best thing. But I realized praying would be the better thing. And pray I did. I finally just told the Lord that I could not do both. I could not be there for my son and have this huge headache. I had to be able to function to take care of Milo properly. I asked the Lord to please either make Milo fine and we go home in the morning, or make my ailment go away.
I woke up the next morning with no headache. And didn’t get another one for a good month. Miracles do happen! However, this meant that Milo was not OK.
The next morning the neurologist came in and dropped the next bomb, Milo’s shunt fluid came back positive with infection and they had to get the shunt out right then. That thing was a direct route to the brain and they did not want to risk infecting the brain. Really??? My son’s brain might become infected? And here I was worried about a droopy face!
This set a whole lot of things into motion. One being what to do with our 5 lovely girls. After LOTS of phone calls from and to many wonderful people, it was determined that our little angles would spend the next week at the Adams-Harts house. She has 3 older kids that were there that could help with my little ones and she is a homeschool mom so was more than willing to help get my kids back on track while I was at the hospital and Scott was at work during the day and the hospital at night. Audrey lives about an hour away from us and, on only hours notice, drove here and picked up my girls and all their stuff. What an amazing friend to take on so much for me. What an amazing blessing she is to me.
Milo was in surgery in a few hours and the shunt was removed and an external one put in. How weird that was to see my son with a tube coming out of his head knowing it was going directly to his brain. Since having a direct line to the brain is so vulnerable, staying in ICU was crucial. Plus they still didn’t know what strain of Meningitis Milo had and didn’t want to infect others in the hospital. So we got the semi-private ICU room. Let me tell you, if you are going to stay in ICU this is the only way to go!! All solid walls with only an opening for a door. There was no door on the room, but still, in ICU that is pretty private.
Milo right after his first surgery on Sunday September 15.
The next week resulted in a lot of tests. A lot of sleeping by both Milo and I. A lot of pain for Milo. A lot of miraculous recovery for me. And a lot of waiting. Waiting for test results and waiting for Milo’s body to heal. The results were very baffling for the whole staff working with Milo. Especially the CDC (center for disease control), who visited us everyday to get updates and answer questions. She was the one who finally explained all about Meningitis to me and how lethal it can be. She said we were lucky we got him in so soon. Usually parents give their children some medicine and send them to bed and don’t bring them in for days. By then it’s usually too late. Another HUGE miracle.
Anyway, turns out that the strain of Meningitis that Milo had is only found in patients who have undergone chemotherapy or had an internal device malfunction. It was determined in the operating room during his first surgery that the shunt was working fine and was only removed because once it has infection on it, because it is made of plastic, there is no way to ever kill that infection. It sticks to the plastic like glue. The other interesting thing about the shunt is that in the 5 years Milo had it, he never had a problem with it. This is a very rare occurrence and had been in his head for so long that his skull had started to grow around it. They had to pry the thing out. The neurosurgeon said he had never seen anything like that before.
How Milo looked for most of the first week. See the tube coming from behind his ear? That is the end of his external shunt. That is the turnie thingie that they used to control the flow of fluid from his brain.
In the end it was determined that his previous infection, the impetigo on his arm, must have gotten into his bloodstream and caused all this. Once it was determined that he was not contagious, we had a bit more freedom and 3 less antibiotics to take. But not too much freedom since he still had a tube coming out of his brain. That could not get infected or accidentally pulled out, that would be bad! At this point the poor kid had not had fresh air for a week. Sad for this boy who spends most of his time in the sunshine and fresh air.
Milo was pretty miserable through all this. His headache and neck ache were bad enough but his legs hurt too. It was finally explained to me that when you move your legs it starts a chain reaction of muscles that actually affects your spine and neck. Another sure sign of Meningitis. Poor guy!
But while Milo was in so much pain my recovery was happening rapidly. By Wednesday, two weeks after the onset for me, a stranger could no longer tell that anything was wrong with me. By 3 weeks out no one could tell anything was wrong with me. By 6 weeks out I was completely fine (well, define “fine” :o)
Besides the fact that my eyes look freakishly big, you can see that my eye brow does not look like it’s cocked and I can do a 1/4 smile. This was Sunday night, only a little more than a day after we got to the hospital for the first time. No progress on my recovery had been made up till then.
Thursday night September 19, Dr. Sun came and asked to talk to me. This was a first for me. Usually he just says what he has to say and is done with it. Another mom I was talking to described Dr. Sun perfectly: ‘The kids LOVE him. The parents learn to accept him for the miracles he performs on our children.’ Anyway, he takes me to a computer with two huge screens. On each screen is a picture of my son’s brain. One picture was from 5 years ago right before they put the shunt in. The other one was taken that morning. Dr. Sun was careful to show me the two pictures and what they meant and what he was looking for ect. I was quite baffled by this free flow of information. But then he got to the point. He wanted to try a surgery with Milo so that Milo would never need a shunt again. He wanted to take a little camera and enter Milo’s brain. He’d follow a path that led to the bottom of one of his ventricles where he would poke a hole and therefore give Milo’s brain fluid a place to escape. Something Milo’s brain has never had. The ventricle they would normally use to do this surgery was too blocked. But there was a ventricle closer to the face that was only blocked at the very bottom.
It all sounded good to me. So I asked him why he was going into so much detail. Let’s do the surgery. Then he drops the bomb. This particular surgery has A LOT of risk. While traveling down this ventricle (which happens to be the width of the lead of a sharpened pencil) he couldn’t touch anything. Then he proceeded to touch certain parts of the picture of Milo’s brain as he traced the path he would take during surgery and said: ‘If I touch this, Milo will have a stroke on the operating table, if I touch this he will be blind, if I touch this he will be paralyzed, if I touch this his pituitary gland will no longer work and he will be on medication for the rest of his life.’ And then he looks at me. Waiting for an answer.
The whole time he is talking I’m begging for the spirit to give me some answer. Some inspiration. Tell me YES do this or give me some awful feelings inside that make me say NO WAY. Interestingly I felt absolute peace. More than absolute peace. An assurance that the Lord was watching over Milo and his doctors and things would work out how the Lord wanted them to. But I also felt inspired to ask ‘Why then would you do this kind of surgery?’ He said ‘Then Milo will never have to have a shunt. Right now Milo has to be close to medical care always. If anything were to happen to his shunt he would need immediate care. Let’s say he wanted to be in the middle of Africa. He couldn’t because of his shunt.’ Middle of Africa??? That was my sign from my Heavenly Father. Thoughts of Milo’s mission flashed through my brain like lightening. I’m not saying Milo’s going to go Africa on his mission, but Milo’s ability to serve the Lord anywhere would be hindered because of his shunt. I looked him straight in the eye and told him that he has always been 100% successful with everything he has ever done to Milo. I had no reason to doubt his skills now and going forward with the surgery seemed like the best thing. I told him I’d have to chat with Scott but I saw no reason why Scott wouldn’t agree with me.
Dr. Sun then assured me that if he got in there and thought he could not successfully perform the surgery, he would just put in another shunt. He also told me that sometimes, even if the surgery is successful, the body would not know what to do with the fluid that was now draining out of the brain and he’d have to reopen Milo and put in a shunt. Or sometimes the body would treat the new whole as a wound and heal it over. In which case he’d have to reopen Milo and put in a shunt.
He left me with a surgery time of the next day late morning. I went in and checked on Milo who was sleeping and then went to the hall to start making phone calls. Then my strength left me and I cried. The reality of the trust I was putting in Dr. Sun and more importantly, my Heavenly Father was almost too much for this weak tabernacle of flesh to comprehend. I think having weakness is natural as long as it doesn’t hinder the work that is suppose to go forth. After chatting with Scott and crying more I was able to rejoin Milo. He was in good spirits and I explained what was going to happen. He was brave, of course, and ready to move on all this and end this hospital stay.
Scott went ahead and took the day off so that he could be there for me and for Milo. Milo went into surgery about noon the next day. He was going to be in there for about 2 hours. After he came out of surgery we had a miscommunication and were not able to talk to Dr. Sun but we were able to talk to his assistant who said the whole thing went perfect and now we just wait and see what the body will do. They still had an external shunt in his head so that if the body reacted adversely to the surgery, they had easy access to solve the problem. I left the hospital about 4 to go home to the girls and spend the weekend with them while Milo and Scott spent the weekend together in the hospital. Again we had to play the waiting game.
The girls and I had a fun Friday night and on Saturday went to visit Milo in the hospital. Milo looked GREAT!! Night and day difference. His headache had subsided and he actually smiled. The real Milo smile. He was ready to go home. But the CDC would not let him out so soon. Even though Dr. Sun was pleased with his progress the CDC were not done with their antibiotic regimen. The girls and I visited Milo again on Sunday but in his OWN room! We’ve never made it out of ICU and onto the floor before. But on Sunday morning Dr. Sun was so pleased with Milo’s progress that he removed the external shunt and said Milo was free to go. So onto the 5th floor of the hospital he went. So much nicer than the ICU!! I didn’t realize how nice it was up there (I mean if you have to be in the hospital that is).
Milo about 24 hours after his second surgery, one week after his initial admittance to the ICU. After this surgery we lost our sweet space. Scott said it was a rough couple of nights!
Ok, so you see that bag in the background hanging off the blue pole? That is the bag that holds all the fluid that drains from Milo’s brain…
At this point it is actually turned off. They wanted to see how he would do. He looks like he’s doing pretty good!
Here is a better picture of the pole. See the whiteish box on the side with a red dot on the bottom? That red dot is where a red line shot out. You’d have to align that red line with the middle of Milo’s ear. Every time he made the slightest move it had to be adjusted. That made for an interesting week….
Milo’s first meal after his ventricle surgery. His first real meal all week. He’d been eating but very easily digestible foods and not much! He ate two meals this night. He just felt so much better.
A special dessert his nurse in ICU made for him. Chocolate chip cookie, smothered in peanut butter and topped with a rice krispy treat. MMMMM!
Milo got to use the camera too! Him and Scott had so much fun goof’n off and helping Milo recovery quicker.
Grandma and Grandpa’s package. A LIFESAVER!! And our visit with Milo in ICU.
2nd round of visitors!
It was raining when we left to visit Milo. Keri instisted on wearing the goggles to protect her eyes from the rain. She melted the heart of about every adult in the ICU that afternoon. She really did look cute!
Milo LOVES his automatic bug. He thinks it’s so fun to scare his sisters. Thanks Jaime for humoring the sick boy!
Milo’s loot from his grandparents.
Afton didn’t want to go visit Milo at first. I think she was a little nervous as to what she was walking into. But once she got in there she didn’t want to leave his side. She missed him so much and I think was relieved to see that he was fine.
They came in Sunday to take out the external shunt. This is what Milo’s head looked like under that big white wrap!
Ok, this picture just wierds me out, but maybe because that is my son’s head that has a tube coming out of it.
No more tube. But apparently it really hurt when they took it out. You can see that in his eyes.
Where they went in to take out the shunt. He has another new scar on the top of his head too.
Milo sitting the window seat of his room on the 5th floor of the hospital. It was a much better set up than the ICU room and he could walk around and go to the school room (his favorite spot…) and we could do school in his room and go outside for walks in the fresh air and he could play board games with volunteers while I went out for walks in the afternoon. Not bad if you have to stay in the hospital.
After our Sunday night visit Scott went home with the girls and I stayed with Milo. He was to be released in a few days so we opted to have the girls stay home and Scott would just go to work and then come home to the girls while I stayed with Milo until we were released.
After a false hope of release on Tuesday, Milo got released on Wednesday September 25 about 1. It was nice to be home and even nicer to be home with a healthy mom and boy. September had already been one heck of a month and we were all ready for it to be over! :o)
I’m sitting here in tears just so grateful for Milo’s and your recoveries. You are such amazing people and I only wish we could be there to hug you and help you. Just know we’ll be doing all the praying we can 2states over for continued recovery for you both. You truly are an inspiration to me. I am amazed at your strength. We sure love you guys!!!
Sami, the strength of your family is an example to everyone. What an overwhelming ordeal you had to experience. I love reading about your faith in the Lord and the line where you said crying seemed like a good idea but praying seemed like a better one. I’m so happy the surgery went well and that you are better too. A lot of miracles, both big and small, in this story! Love you all!