Take This Week And Shove It. :-)

Happy Birthday Cheryl Dee! I won’t tell people how old you are I’ll just give them the hint that your oldest daughter is collecting social security and lives on a diet of bran and ginko. Leaving this last week to go to Las Vegas for work was torture, easily the longest week of my life. It’s amazing how your perception of time changes as you get older (or in Susan’s case just “old”). Remember when you were a kid and the longest week of the year was the week before Christmas because of all the hype and excitement, or the week before Bear Lake because all good vacations, per the handbook on motherhood, must be used as blackmail to ensure a week worth of menial labor in order to have a spotless house. As I got older the weeks on “the mission” were the culprit, I swore oft that they would never end, and then there were the weeks of Basic Training which were eerily similar to mission weeks only your rear was being chewed up and handed to you 24/7. This last week out did them all. In hind sight I wish that I wouldn’t have gone but bills have to be paid. While flying back to SLC I was feeling sorry for myself that I had to be away from the hospital and I had to check myself. I started thinking about how long Charlie’s week had been and how many long weeks he has ahead of him. Charlie is trying so hard to get better and progress will be slow. I was a little discouraged that when I saw him after a week his status was basically unchanged. There is certain reality that comes with brain injuries like Charlie’s and that is the longer he goes w/o improvement the slower any future progress will be. So in order to maintain sanity I’m officially throwing time out the window. I’m no longer concerned about how long this has been going on or how long it will. My only concern is taking care of my little buddy, keeping him calm, making sure he’s not hurting and providing the best environment for him to heal. We will still watch and hope for small improvements but I’ve stopped caring about how long it will take.

Welcome Back Daddy! :)

It has been a pretty relaxing afternoon. Coop has slept a great deal and has even calmed himself once without medication. He had a big increase in Neurontin (from 15mg to 50mg tid) and an increase in Tranxene, so that could be a big factor in his calmness. Dr. Brockmeyer came and talked to me about the ventricles this morning because I was so concerned. I don't think it was an expected finding but I guess it is far better than the alternative. From what I understand, the reason he is not concerned is because when the shunt was put in the pressure in Charlie's brain was not significantly increased. Also the CT scan showed there is room between the brain and skull so the enlarged ventricles are not pushing the brain out against the skull. The bad part is that the enlargement is probably due to atrophy (tissue loss/brain damage) instead. :(

Above is brain CT pictures- The left is from the night we came in (Jan 27th-normal) and the right is from the day after the drain was put in (Feb 13th-abnormal). I don't have the most recent scan but the report reveal they were even bigger than Feb 13th. The ventricles (the reservoir where the spinal fluid is stored) are the dark bean shaped images in the middle of the brain. It's easy to see the difference in size.I went to watch physical therapy today with Janine to watch the workout. I love watching him try different positions. He was so relaxed that he fell asleep in each position. We stretched his neck legs and armsJanine stretched Coops neck out while having some tummy time. He opened his eyes for quite a while. His pupils don't really focus but I loved thinking he was looking at me.

Today's workout was so different than before. He used to get mad every time any of his body was moved. Today he was OK with movement as long as it was very, very slow.

Friday Morn

I was too worried to sleep last night so I asked the nurse to look up the CT results so I could get it straight. Syd was not concerned when she gave results to the Grandmas so I thought the information was just backwards. The results said pneumocephalis (air in the brain) in the right ventricle (where the drain is) and the other three ventricles were enlarged from previous scans. The impression on the report stated that the drain had good positioning but increasing hydrocephalis (fluid in the brain). The information was correct and yet it didn’t seem to be a concern. When I saw the right eye deviating to the right side I got nervous and had the nurse page the rehab resident (Cameron). He said they had noticed the right eye deviation for a couple days now but since he didn’t open his right eye very much before they felt it was not new. He also told me that they stopped the draining of fluid for hours before the surgery so the neurosurgeons have a bigger target when inserting the shunt. Syd had talked to Cameron about the findings but did not feel it was “true increased hydrocephalis” otherwise they would have intervened immediately. They both came by this morning to talk to me and reiterated what was said last night. Syd is going to talk to the neuroradiologists and then we are supposed to do another CT in a week to re-evaluate. Something else that was mentioned was the possibility of the ventricles not shrinking due to atrophy (wasting away of tissue). L The chest x-rays also show a small amount of thickening in his lungs probably from mucous. There is not much and Charlie doesn’t require any oxygen so they are not concerned

Delayed Update

Sorry for the delay in updating. I went to make some decisions about the new house while Grandma Cheryl and Grandma Kathi sat with Charlie. I hadn’t seen the house other than pictures in 2 weeks and I am so amazed at how great it looks. Jared has been dealing with all of the organization of sub-contractors and fixing all the problems (ask him about his horrible day), John and crew are almost done painting the “Rainbow of Colors” (sorry John), and Chadski has almost completed the audio hookups. The carpet looks awesome thanks to Kerry and Dennis who drove 4 hours to put it in. I am so grateful for everyone’s willingness to help. I will never be able to express how much it means to us. Thank you again. It feels like a real home.

Charlie’s update:
This morning I spoke to Dr. Osguthorpe regarding the blood test for Coop’s immune system. There were a few slightly low results but all in all he felt like he has a healthy immune system. Good news! It doesn’t explain why Charlie’s body wasn’t able to fight it but at least it won’t be a future concern. The serotype test to see what strain his bacterium was is not back yet.

Neurosurgery- afternoon (as reported to Kathi and Cheryl). Shunt placement was checked with x-rays and everything looks to be in the right place. There is a little confusion as to what the brain CT showed so I will verify this information with Syd tomorrow. Kathi thought she said the ventricles were larger than the last CT (on the 13th) but Syd (Neurosurgeon Nurse Practitioner) was NOT concerned at all. However, I am very uncomfortable with this finding. I am thinking that it was a miscommunication because the ventricles should be getting smaller with a drain/shunt.

Throughout the day Charlie has had quite a few storms but they seem to be getting a little less severe as we move further away from surgery. While Troy was visiting tonight, Charlie had his eyes open and was not storming. That almost never happens. I noticed that his right eye seemed to deviate to the right so I have asked he nurse to report that to the doctor. He did another session in the gym with physical therapy. I hear he didn’t like the swing this time but he did like the vibration of an instrument. We still haven’t heard from the audiologist about hearing results and haven’t seen a consult regarding cochlear implants. Charlie’s Dad should be back in the morning so the blog entries will get entertaining again.

Answer to your question...

The shunt is a permanent feature of Charlie but something that is more common than I thought. The tube runs from the middle of his brain where the spinal fluid is stored, through his skull . There is extra tubing in his abdomen to allow for him to grow. They say an average person comes in 5 times in their life to have it readjusted/lengthened. There are some people that do great and never have problems but there are also some that don't do well and have to come in a lot more frequently (infection or scar tissue). There is no way to make sure the shunt is working other than checking the size of his vetricles by a brain CT (X-ray). There are phyisical signs that indicate increased brain pressure which could indicate that the shunt is not working. Things we are supposed to watch for are decreased alertness, unequal pupils, change in behavior, unexplained fevers, agitation, feeding difficulties. So basically everything that he currently does. This is what makes me so nervous. Hopefully by the time we go home he will be more stable and I will be able to distinguish between the "new" Charlie behavior and shunt malfunction.

Stormy weather :(

Just as predicted Cooper’s storming got worse after surgery. With any increase in triggers (pain, discomfort, surgery etc) the storms can get worse. He had three big storms during the night shift that each required Ativan. They routinely gave Tylenol/Motrin for some pain control. The current storm has been going on for 1 ½ hours and didn’t respond to Ativan. He also has been put back on an oxygen blow-by to keep his oxygen levels up. We just changed his bedding again and did all of his routine care (weight, head measurments, belly measurement, vital signs) so when he calms down we don't have to wake him up. The rehab team just came in and the plan is to first give him some morphine to see if it stops the current storm. If so, it is presumably pain that is triggering the increased storms and we will be more aggressive in treating the pain. If not, they suspect it is the neurologic instability causing it and they will focus the Neurontin and tranxene. His propranalol (beta blocker) has been stopped because his blood pressure is too low. The nurses have not given it several times in the last couple days becuase of his blood pressure so they have decided to stop it altogether. He is scheduled to have X-rays of his head and chest to check placement of the shunt.
Grandpa Barlow checking out the bump (shunt tube) on his head from surgery

Like Father Like Son :)

On our way back from surgery

In the recovery room wrapped in warm blankets.Mom saying goodbye and leaving him in the capable hands of the surgeon.

Covered in Betadine (red colored anti-bacterial fluid) after surgery. We aren't supposed to wash it off for 24 hours. Meg thinks he looks like an oompa-loompa. Didn't Vivian/Doris always want a grandchild with red hair?

Charlie got settled in his room then audiology came to complete the hearing work up so we had to leave the room so they could get a good reading. They had to wait for him to be calm enough do the test but when the tech placed the probe in his ear he would wake up. Needless to say it took a little longer than expected. When I came back, Charlie was having another storm. He was breathing heavy, his sheets were soaked from sweating and his heart rate was 202. I haven’t seen his heart rate that high in 2 weeks. He didn’t have any crying or arm movements with this storm. The nurse gave Ativan and within 35 minutes he started to calm down and has been sleeping ever since.
The Neurosurgery Nurse Practitioner, Syd, stopped by to check on him along with Charlie's girlfriend, Dr. Shannon (welcome back from Colorado!) and his favorite Dr. Osguthorpe. He is once again off Infectious Disease service but Dr. O said he would stop by socially to see how Coop is. We also can follow up with Dr. O when we go home but his office is in Provo so Rob may have to take him to those appointments. No word yet on the hearing test. I believe these results come from the audiologist. Vancomyacin was stopped today after the surgery. Dr. Such-Niber is looking to start Neurontin 15mg three times a day to calm him. Physical therapy has been postponed until they get the green light from Dr. Brockmeyer (neurosurgery).
His NJ tube has just become clogged. The nurse has tried different sized flushing syringes and is now going to try a little Coke in the tube to break up the clog. They asked my permission and I said Charlie's dad thinks Coke could cure cancer so it may be just what Coop needs. If you know Rob he is rarely seen without a Coke in his hand and I know he has secretly given Coop Coke before although he won't admit it to me. What do you know it worked!!! Hurray! It was a last resort that prevented us from having another NJ feeding tube placed along with the placement X-ray. The nurse said there was even a possibility of havng to go the whole night with no feeding tube which would mean no meds through the tube either.

Relief :)

He is done with surgery and all went well. He went in at 9:20, the surgeon came out to talk to me at 10:02 and then I was able to go back to the recovery room with him at 10:45. He looks really good. There are two incisions one behind his ear and one in his abdomen. They stitched up the hole in his head where the drain used to come out. The rest of his day may include audiology, ENT consult, PT/OT. Thanks for the support and prayers.

Surgery is.... Now :)

Dr. Brockmeyer just came in and bumped him up to surgery at 9:00. He signed his face to make sure he gets the right patient. The actual surgery will take about 30 min but he will need to be preped and go to recovery afterwards. I will update in a couple hours after we get back to the room. Say a prayer for us.

Today is the Day :)

Grandma Cheyl said the night was better than before. He slept until 10:00 then blew out his diper and felt better but didn't calm down until 11:15. He woke up again at 2:30 for a diaper change, suction, repositioning and arm splint placement then went back to sleep until the neuroresidents came by at 6 ish. He is still on the schedule for 2:00 but they said to expect later. He has had a little fever with his storms but nothing to worry about. His feedings have been stopped and his drain has been clamped in preparation for surgery.

HAPPY BIRTHDAY JADA ROSE!!!

Today is the birthday of a special little girl in our lives, the girl that w/o doubt charlie and britton will get in a fist fight over some day. She is a walking miracle and the hottest chica in all of PCMC and it sucks that she is in the hosp. on her birthday. HAPPY BIRTHDAY JADA! We love you and your mom and dad tons.

Tues Night :)

Coop slept most of the morning with some intermittent storming that increased in the afternoon. I think he misses his daddy like the rest of us. His right leg cast was removed and he was measured for adjustable leg splints. Physical therapy came by but we decided to postpone until the morning because he needed his rest.Rehab team has re-evaluated his medication in hopes of preventing another night like last night. The next step would be to try neurontin to calm his nervous system response. Surgery is scheduled tomorrow for 2:00 pm so he will be taken off his feedings at midnight tonight. He will still receive his medications as usual.

Up all Night...Sleep all day (What song is this?)

Last night was a little rough. He had a storm that lasted from 6:00 to 9:30 pm. He even soaked his entire bed from sweating so much. His fever was off and on throughout the night but came down with Tylenol. Dr. Osguthorpe came by this morning to let us know that they organism that grew in the broth from Saturday is the same one as before (staph). He feels it is a contaminant and he has recommended going ahead with surgery tomorrow. The surgery schedule will be set by 5:00 tonight. Both physical therapy and occupational therapy are going to tag team with Cooper in the gym later this afternoon. I'll get more pictures if I can.
When it rains it pours. Currently our friends are in the isolation pod with their daughter Jada and Rob’s cousin Tera is in the ER with her family. I think we may need to buy stock in IHC because there is no shortage of need for this hospital. Tera and Randy and their two children were in a car accident this morning with both of their children in the car. Aunt Beth just stopped by to tell me they are doing fine. I don’t know many details except that they were driving up a hill and drove into some fog and then spun and may have tipped over. They brought the children to the ER here and checked them out and they are fine due to being strapped into the carseat. I am relieved they are safe.

Quiet Day :)

Today has been pretty uneventful. Charlie has had a few storms but I think they are getting better. A surprise today was that he had a fever today of 100.4 and he hasn’t had a fever for quite a while. It came down shortly afterwards but I’m hoping this isn’t indication of infection. He has restarted Vancomyacin as a precaution due to the CSF culture. Dr. Osguthorpe is going to complete the immune system work up to make sure there isn’t an underlying condition that prevented Charlie from fighting the original bacteria. This information should be back around the end of the week. They are also analyzing his bacteria to see the exact serotype (strain).

"Rinse and Repeat"

Occupational Therapy came by and did some stretching. They had him sitting up to stretch his hip joints and while upright he brought his head forward slightly on his own. :) OT will also take him to the gym later today since his schedule has freed up.
Charlie couldn’t stand to not need Infectious Disease team anymore, especially knowing that his friend, Dr Osguthorpe, was back. So he had to throw a twist in to keep them interested. Dr O said "Rinse and Repeat." We were in this same scenerio a week ago. The organism is not identified yet but they suspect it is a staph contaminant. The plan is to restart vancomyacin just incase the organism is really an infection in his brain while we wait for the subsequent CSF samples to grow for 48 hours. If they start the antibiotic today they still have Saturday and Sunday’s samples (with no antibiotics) that will tell if the organism is reproducible. There is a high occurrence of contamination with external drains but it is important to make sure.

New lounge position to force him to bend at his hips. He doesn't like it very well.

Crying while the therapist is stretching his finger joints.

Surgery is postponed

Because of the slight possibility of infection, Dr. Osguthorpe feels it is better to wait a couple days to make sure. We will see what the samples from Saturday and Sunday grow on their 48 hour cultures. We are tentatively re-scheduled for Wednesday morning with Dr. Brockmeyer if the subsuquent cultures are negative. Better safe than sorry! There is a risk of infection with any shunt surgery so we certainly want to be sure that there is no additional risk that we can control. Thanks for all your prayers so far.

Pre-surgery Update

The nurse just let me know that Charlie's CSF sample from the 23rd has grown another gram postitive cocci. It is the same situation as a week ago. The organism only grew in the broth after 48 hours. The nurse has contacted neurosurgery so we are waiting to see what they decide.

Big Day Tomorrow :)

It has officially been 4 weeks since we boarded this roller coaster ride. There have been a lot of ups and downs, unexpected turns and there have been times when our stomachs have bottomed out but we are still here for the ride. When you are here everyday it is difficult to see the progress that has been made. I had a friend point this out to me today. She comes to visit about every week and tells me how much better Charlie looks and what progress has been made since her last visit. I look at how much further we have to go and forget to appreciate how far we have come already. So in the 28 days we have been here this is what we have accomplished; The infection is completely gone, Charlie has come off the ventilator and is breathing on his own. He no longer needs oxygen, antibiotics, pressors, and is weening off some other medications. He is now opening both eyes when agitated, moving his arms and legs occasionally on his own. His "storms" are decreasing in intensity and frequency and we hear him cry when he gets mad. Thanks Whit for helping me realize that we are headed in the right direction. Tomorrow morning at 9:30 Charlie heads to the operating room for his shunt surgery. It's expected to last a couple hours. Then Charlie will come back to his same room to recover but will need to keep things very quiet and mellow for a while so he can heal. (Angel)

A Day of Rest

Things are smooth. Charlie had one storm early last night but the fell asleep about 0130 and slept until 0630. Rob was pleased. He Stormed again from 1030 to 1230 then a little clonadine cocktail wiped him out. Rob was pleased. In the last few days he has started sweating during storms way worse than before so I asked Dr. Fran what causes this. He said it's a autonomic sweat that is common in kids w/ uncooperative brain stems and should improve. I hate uncooperative autonomic nervous systems. Right now Charlie is out like a light and we're having a great time playing w/ Britton. Rob is pleased. Surgery for tomorrow a.m. is still a go however Rob won't be here, he'll be enroute to Las Vegas for a week long conference and he will not be pleased. The pictures of the house, minus the futile graffiti, look fantastic. In 3 weeks that house got way cooler than we deserve. Thank you, Thank you, Thank you!