Emergency Brain Surgery

I knew my son, QW had not been feeling well.... he had been complaining of headaches that last week, but I didn't really think too much about them, figuring, it would pass. Then he started having a fever - not super high, but enough for me to worry. After a few days, he wasn't eating.... We knew something was wrong.

I took him to the med express center. They ran a throat culture, and tested him for the flu and strep - all came back negative, but they said that sometimes the strep test can be wrong, so they sent us home with antibiotics saying it was probably strep. 

The next two days, QW kept getting worse. I finally took him to the Emergency Room on Sunday, May 28th. They did blood tests and took a CT scan and said that he had acute sinusitis (a bad sinus infection that was deep in the air pockets of his face) and sent us home with a stronger antibiotic.

Memorial Day, May 29th, QW seemed better - he ate lunch and walked outside.... we thought he was feeling better. In the afternoon, he became non verbal for 10 min., so I had him lay down and rest, and when he got up - he seemed just fine. Later that night, I went back to his room to check on him and he was lying on his bed, his hands crossed over his chest, his eyes moving, but he was unable to respond on follow any commands. After 15 minutes of trying to get him to respond to me, I was so scared. I woke up the hubby and had him carry QW to the car, and I drove him to the emergency room.

It was a long night/morning. They ran lots of tests, blood work, and took another CT scan. Wyatt was nonverbal the entire time (for over 9 hours.) They finally discovered a spot on his brain and told us that they would transport him to the Children's Hospital in Indy for treatment.

We waited over 3 hours for the emergency ambulance to come get us for transport.

When we got to the ER at the children's hospital, there were doctors, and nurses everywhere. We knew it was much worse than what they told us back at the other hospital. They took QW back for an MRI and as soon as it was over, started prepping him for surgery. Stephen and I were in a daze. I remember the surgeon trying to explain to us the procedure, but all I remember thinking was how did my son go from a perfectly healthy boy to needing emergency brain surgery?!?! It seemed like a dream... a dream I was waiting to wake up from, but it never happened.

May 30th - They took QW back to surgery at 11:00 am. We were told it would be a 3-4 hr. surgery. It wasn't. He had two different teams of surgeons working on him. 

QW had a Subdural empyaema from bacterial or fungal infection that spread to the subdural space due to having chronic sinusitis. He had no symptoms of a sinus infection. 

The Brain Surgeon and her team had to do a Craniectomy. Which originally they were only planing on cutting out a forth of his skull, but since the brain was swollen so much (it was actually hard to the touch) and was under so much pressure, they removed almost one half of his skull. The surgeon removed as much as the infection she could and also had to repair (graph) the dura, as the swelling from the brain had ripped a hole in it. She also placed a EVD to drain off SPF and a JP drain. 

After that, a new team of doctors and surgeons did endoscopic sinus surgery.

We were told at 8 pm that surgery was over and they were moving him to ICU. The next 2 hours were pure torture for me! I kept calling to see why I couldn't go back to see my son. At 10 pm. we finally were able to see QW. 

He was on so many machines and tubes going everywhere. But I was so relieved to see him, feel him, and to know that he was alive, and that I could be with him. I didn't cry. The relief I felt was amazing! 

      

May 31st - Today's picture.... 

They tried waking QW up today, but he wasn't waking up, so they stopped all the sedation. He has a higher temp now, so they just put him on a cooling blanket, poor kid, he just shivers and shakes. I've been ok, as long as he doesn't start crying, then I start crying too. You can't hear him cry, but he shakes and tears just roll down his checks. I have never felt so helpless in my life.Stephen and I went for a walk and got a salad for lunch. It was hard leaving him, but good to get out of the room a bit. 

The breathing tube came out tonight. He is in ICU. He is fighting a fever, and having more pain, but he is following directions. He opens his eyes and follows commands alittle, but mostly is still asleep

June 1st - Things are about the same with QW. He had his first sip of water tonight. Right now, they just want to keep him resting. The surgeon said that with this surgery the mortality rate is high and most kids don't do nearly as good as he is doing, so we are very thankful for that. He is saying single words with some coaxing. His sisters came to visit today and he got a furry friend to have in bed....he looks so much better now that the breathing tube is out.... 

June 2nd. - QW had a relapse this morning and became nonverbal and unresponsive again for 4 hours. He is still in ICU and being monitored closely. The doctors say that the infection on the brain was so severe that him going backwards is to be expected.....

This morning was rough... but he's doing much better this afternoon. He got the bandage and a lot of wires off of his head today. I think he looks great! The doctors reminded us that his condition is still very serious. Tonight he's hanging out with Mom, watching a movie!

June 3rd. - Stephen went down to get supper and when he got back QW said "Dad, I miss you", (it's the only words he's said today) - so tonight he's hanging out with dad... he has had a good day today. Got a different room, still in ICU.

June 4th - QW had a good day today. He still isn't eating much, but he did really good with therapy and played thumb wrestling with his dad... I love his face in this picture!

June 8th - QW's doing ok... we have good hours and bad hours. His brain fluid is still not evening out, so not sure if he'll get a permanent drain/shunt or not.... we are kinda just playing a waiting game.... they did take him off of ICU status and put him on med-surg., but he's still in the ICU unit and still has a nurse sitting in the room with him 24/7. There hasn't been much change the last couple days....

June 10th - QW is about the same. Mornings are rough as his medications give him an upset stomach. Afternoons are usually much better when they get him up in the chair. The hospital brings Lego's and toys that he can put together and that helps. He gets physical, speech, and occupational therapy everyday, along with all his different teams of doctors making their rounds, so by evening he is tired. 

Tonight the girls and I got a hotel, while Stephen stays with Wyatt... it's my first time away from the hospital in 12 days. He still has a nurse in his room 24/7. They started raising Wyatt's EVD yesterday evening...1 centimeter every 6 hrs. The hope is maybe early next week to take head scans and send the brain fluid from the EVD to be tested and maybe take out both of his drains next week, but the one thing I've learned is that you can't plan on anything here....

PS. He was pretty excited with the candy bouquet he received today from a kind lady we've never met that works with his G'pa K.

June 12th - They put QW to sleep this afternoon for an MRI and then the neuro surgeons took out both the EVD and JP drains. They also drained more cerebrospinal fluid (CSF) off his brain. He had a rough time waking up from the anesthesia and was in a lot of pain - more than any other time since we've been here. The doctor said that the JP drain went the whole length of his incision, so it is quite painful. They put him back on morphine today along with his antibiotics, IV's, and reg pain meds. He also has a fever again tonight, so they are keeping an eye on that. 

We are still waiting to hear back from the infectious disease doctors on the MRI results and how much infection is still on the brain and when he can have the next surgery to get his left scalp (bone flap) put back in.

June 16 - This past week was a rough one. There was alot of pain, tests, and tears, but today was a great day! OT took him down to the kids zone to play air hockey. Then this evening I was allowed to put him in a wheel chair and go downstairs for supper and a stroll... today's the first time he's been out of the unit! He also got to wear his own shorts today!

June 18th - After 21 days.... I came home last night! Stephen stayed overnight with QW. There are weeds 2 ft high in my flowerbeds, but it felt great to be home for a night... even if it was short. QW has been tired the last couple days, but his pain is much better, so we are thankful for that.

June 22nd - QW has a lot of therapy through out the day, so he still gets tired easily, but he's been doing really good. His next surgery is scheduled for June 30th to put the bone flap in and if everything goes good, we hope to go home on July 3rd...... of course that all depends on the next MRI and the Infectious Disease Team signing off on the surgery and discharge. 

We were told today that he won't be able to ride his bike or ATV, or jump on the trampoline, etc., for 2-3 months after we get home, so it looks like it may be a long summer for him not being able to do much, but for now I will just be happy that hopefully in two more weeks we'll be home for the 4th of July!

June 23rd - Stephen and the girls come down to be with QW and I every Tuesday and Thursday evening and on the weekends. Playing in the Kids Zone as a family helps to pass some of the time.

June 25th - QW is worse today. He didn't go to sleep until after 5 am this morning. He has been using the incentive spirometer 10xs every hour and are having him walk more, but it seems to keep getting worse. So far, it's been alot of tears yesterday and today....

June 26th - QW has been about the same... he had a rough morning and evening with a lot of pain in his chest and side, so they did chest x-rays today. He has atelectasis which is the collapse/closure of his right lung - The RN says QW's atelectasis is just partial and it's because he's not very active or doing anything to use his lungs to their full capacity, like he would at home.

June 27th - Today is 4 weeks since we've been here at Riley Children's Hospital, but I found a place to take QW outside for a few minutes for the first time today.... shh... don't tell the nurses!!! I was a beautiful day in Indy! QW is still having a lot of pain with his collapsed lungs, but we are praying for good MRI results on Thurs., so that surgery can go as planned on Friday.

June 28th - QW's about the same. Still in pain. They started giving him more pain meds during the day, so he's been sleeping alot more. I think alot of it has to do with his attitude, as I think he's mentally just done with being in here and he doesn't even want to try anymore, that, and he's been scared about the next surgery - so we have to keep pushing him to get up, walk, and breath, which gets rather exhausting for me.

June 29th - We have been asked why QW has to go home on antibiotics after being on them for 4 weeks..... here is the short answer: The doctor says that we (not medically minded people)  really don't understand how bad his infection was and that if a drop remains attached to his brain and grows, he could have to have surgery all over again or he could die from it. She said we should be very thankful that he's doing so good and that he can go home this early, because most kids as bad off as he came in do not do as good as he's been doing. 

QW had another MRI this morning. His side is still in alot of pain. His legs have been to weak/shaky to walk yet, it took two nurses and me to get him out of bed. 

June 30th - Today is QW's second surgery. We went down to the 'green room' to help pass the time. The bean bag chairs vibrate to the sound of music. Everyone enjoyed relaxing for a bit. 

 They took QW back for surgery at 4:45 pm. The surgery took longer than they had originally told us. Wyatt just got out of surgery at 10 pm - it was a little over 5 hrs. There were a few minor complications, they had to drain extra fluid, and shave off a layer of his skull, and they are worried about his lungs and oxygen levels, but as of now the bone flap is in. 

  

He is getting breathing treatments every four hours and is still on oxygen. The Dr. said one in every ten surgeries they have to go back and take the bone flap back out due to new infection so we are hoping everything will be fine. 

   

July 1st - QW is doing good today. This afternoon he started breathing on his own. He is still getting breathing treatments and he is in a lot of pain. His left eye is almost completely swollen shut, but he's up walking with help and eating and talking good. 

We are waiting to hear from pulmonary about his lungs/chest pictures, but if they give the okay, the plan is to go home soon. He will go home with his PICC line and on antibiotic IV's, so they are suppose to come train Stephen and I how to give them, change the dressing, flush the IV's, etc. Of course all this is subject to change.... and we won't know for sure until we get the chest results from radiology and see if they can wean him off of the morphine.

    

QW got a picture with his surgeon Dr. Smith today. She is the best of the best! We are beyond blessed that she took such great care of QW. She would come by just about everyday to check on him and answer our many questions. How do you thank someone who saved your child's life?

July 2nd - Enjoying the beautiful weather.... and wearing normal clothes!

July 3rd - Today, I had to tell another little kid that I came to love on QW's unit goodbye.... but.... 

After 5 weeks at Riley - QW came home today! It feels so good to be home! Now we are just trying to adjust to a new normal that revolves around daily infusions, doctors appointments, and trips back and forth to Riley. QW came home with his PICC line and we have to administer IV's throughout the day and night. A home health nurse comes to the house weekly to do his dressing changes.

July 4th - Sitting here giving QW his 5 AM infusion..... it feels great to be home, but exhausting as well... I've gotten 3 hrs of sleep. Our life will revolve around infusions, tubing, syringes, pumps, flushes, and treatments for the next few months....

July 11th - QW is doing good! We've been home for a week now! He gets infusions every 6 hours. His G'pa F. brought him a pedal car to ride since he can't ride his bike or ATV. Wyatt loves being outside again! As great as it is to be home.... Stephen and I are exhausted and sleep deprived, but we are starting to adjust to a new normal.

July 13th - Daily (and nightly) life at our house...... 14 years ago I signed up to take CNA classes, but I didn't even make it through orientation.... nursing just wasn't my thing.... who knew years later, I'd be giving infusions every few hours, working with a PICC line and caring for my son who had brain surgery. - My hubby rigged up an IV pole by using bag clips and the lamp shade.... it's working like a charm!

July 25th - Spent all day in Indy at the hospital with QW today. His MRI came back good, so good that they took out his PICC line today (he's had it for 8 weeks.) which means we can stop doing infusions around the clock..... and he didn't have any trouble with the anesthesia this time. We are so thankful he's doing so good.... 

If you have said a prayer, sent a card, gave a gift, brought a meal, came to visit, supported our business, or blessed our life in some way over the last few months.... We want you to know that we appreciate you. Thank you!

NOTE: QW will go back for more testing in December to make sure the infection has not returned. He is currently on anti seizure medication. He is doing great and is getting back to normal!