Ups and downs

We haven't updated for a few days because everything is constantly changing and as soon as we post something, it is outdated. Truly ups and our fair share of downs.

The drain has been doing its job to remove extra CSF (cerebral spinal fluid) but its a delicate dance where we are trying figure out how much to drain to keep fluid from leaking out of the incision. This is important so his wound stays dries and can heal and that seal is what regulates the production of CSF. If we drain too little fluid, CSF builds up and can leak out the incision (prolonging healing) and too much drainage causes him to get a wicked headache. Aside from being a nuisance, the CSF leakage can make Cannon especially susceptible to infection, which has us all very nervous and anxious. 

Over the past weekend, we had some additional challenges. First, his incision kept leaking despite having the drain in place. Then, to complicate things even more, his lumbar drain in his lower back started to leak. Because of this leak, he had to have some additional stitches in his lower back. I think the entire PICU floor knows Cannon now after that procedure, as it was with no pain killers.

This morning (Monday), his incision still was leaking, so he had additional stitches where they cleaned out his wound and restitched the part that is having trouble healing. After the ordeal sealing up his drain, they decided to pretty heavily sedate him. Cannon is hilarious when he is on these sedatives. The nurse called it "Truth serum" so of course I took advantage and asked him if he had a girlfriend or had a crush on anyone in his class, to which he replied in a very drunken slur, "Mom, this stuff is strong but it's not that strong for me to tell you that." The entire staff got a big kick out of that. :)


The ups were plenty this weekend. He had lots of visitors! Including his Grace and Clark, Grandmat and Grandpa, Uncle Scott and Aunt Nicole and cousins Bennett and Lara, as well as Will and Tristan from school. And he got LOTS of food. :)

He even had a visitor from Dakota, a therapy dog in training. This really made him very happy and he can't wait to meet the next therapy dog making the rounds.

So now that the wound has been stitched up with what we pray is a tight seal, the drain is in place and  he is resting comfortably, we ask you to pray for healing and to protect him against infection. I can't tell you how much we appreciate the continued prayers and positive thoughts. It really keeps us going. More to come later this week. 

Drain, Drain... Go Away!

Yesterday was a great day, until we got up to take a shower and his incision started leaking again. This means that there is still too much fluid building up behind the incision which is prohibiting it from healing properly, and the stitches just aren't holding it. So last night, Cannon had a lumbar drain placed in his spine, which was very stressful for him.

Despite all of this, he is still in good spirits, eating his bacon, drinking chocolate milk and playing video games. He was really excited today when a box of Mrs. Fields Cookies arrived (which he likes microwaved with a cup of milk).

Another thing that made his day today was a note from the HTS Principal, who said the 5th-8th grades got together to do a project for him. This made him SO happy.... especially when he saw photos of his classmates making a message chain to send to him.

The "chain" is en route to CHOP. We can't wait to see it and decorate his room with it. We are also expecting some visitors! Grace and Clark are on their way with Grandma and Grandpa and he's really excited to see them tonight.

We have our ups and downs each day -- procedures, pokes, prods that don't make anyone happy -- but  then we also have our highlights -- where he is happy to watch movies and have Harry Potter read to him. AND we just found out that we are being moved to a private room (woo hoo!) so good news for now.

As far as how long we will be here, it's hard to say. The drain is there to remove some of the CSF so his incision can heal a bit -- and so they are trying to balance the removal of the fluid with the healing. Once they think the incision has healed enough, they will clamp the drain to see if the incision holds. If it doesn't, we repeat the process. It's not an exact science and it can take a while - so we are guessing at least another week. And hoping that there are no other speed bumps along the way -- so thank you again for your continued thoughts and prayers. More to come tomorrow.

Update: A ray of light!

First, Cannon asked me to thank everyone for all the prayers. They are working!

It's been a tough 24 hours. We found out yesterday that Cannon has staph bacterial meningitis. We have been extremely scared and worried, especially seeing him deteriorate so quickly since Friday. He has been in the PICU as a "no touch" patient, where every time they come in they have to put on masks, gloves and special scrubs.

After they could identify the bacteria, they have been able to adjust his antibiotics to target the strain and he has been responding. His temperature is back to normal. 

Then mid afternoon, Cannon had a PIC line inserted (basically a tube that goes from his arm up through his vein into his chest area) where they can easily administer the antibiotics, fluids and also draw labs. He was NOT happy during this as he was awake... and it was a sterile procedure done with ultrasound and was pretty painful for him. 

Then, the surgeons told us they wanted to schedule additional OR time in case they had to go back in to do a "wash out" - basically reopen his incision to ensure removal of any pockets of fluid that the antibiotic couldn't reach. None of us were happy about this. Last night they did an MRI to see where these possible pockets could be and we were told he would be operated on today (Thursday). 

As of this morning, the plan was still to go to surgery -- so we started prepping. Then about an hour ago, Dr. Heuer's team came in and gave us some good news: Dr. Heuer liked what he saw on the MRI and that additional surgery doesn't appear necessary. AND -- the syrinx (the pocket of fluid that had formed in his spinal column which is the reason he had to have surgery in the first place) appears to have already started getting smaller. 

So now Cannon is thrilled that he can eat -- and we just ordered 5 side orders of bacon. :)

A case manager will be coming shortly to talk to us about possible at home care for the remaining administration of antibiotics so hopefully we will have a plan to get him home soon. 

We are all completely overwhelmed by all of your love, prayers, offers to help the kids, and everything else. Words can't express how much they mean to all of us! This has been a very trying time for all of us and we are thrilled that he seems to be making a positive turn. We hope this means we are on the mend and will have more good news soon.  

Prayers needed

Hello - this has been a real roller coaster for all of us. The latest is this:

• Cannon has been progressively worse after getting his stitches, spiking intermittent fevers (as high as 101.7 at home) and having tenderness in his neck and incision site.
• Brought him back to CHOP Tuesday -- he had a spinal tap so they could test fluid for bacteria. 
• There's still no definite word on what is going on. His spinal fluid tested as if he has bacterial meningitis. 
• There is also a kind of chemical meningitis common with spinal/skull surgeries that presents as bacterial meningitis, however they have to take the fluid sample and see if any bacteria grows. We are in this waiting period.
• Something is growing - but we aren't sure if it's bacteria or a contaminant from the procedure or what. First they said bacterial, then they weren't sure, then suspect chemical. Just don't know yet. However, they are inclined to think that it is bacterial at this point. 
• He's in quite a bit of pain. They are trying to keep him comfortable on pain medications. Last night his fever got as high as 104 degrees. 
• Since they don't know, they are treating as if bacterial to play it safe. He's on Vancomyacin and Cefepime as well as steroids.
• We don't know if he will need more surgery - they are talking about doing a "washout" but don't know what that means yet.

Please continue to keep him - and all of the the people involved in his care in your prayers. It has been very scary for all of us. Thank you. 

Not in the clear just yet...

We have had a great week -- and Cannon seemed to be doing well until yesterday. At first, we thought he was just sweating. His shirt was damp. Cannon called me this morning since I'm traveling and I said how are you and he answered, "I'm sweating like a pig." After the sweating continued, and upon further examination, we realized his incision was leaking. Cue mom's full blown panic mode. 

Turns out he was leaking CSF. Thank God we were able to get him to CHOP into the ER and he was seen by the neurologist on call. He had to get an additional 10 stitches and some glue to hopefully seal him up. However, the doctor warned that he really needs to take it easy because there's only about a 50/50 chance that the sutures will work. If they don't work, they said he will need to be hospitalized and they will have to put in a drain to remove the excess fluid. 

I'm writing this on the plane as I was in Seattle for Soft Bones, and now I'm rushing back to Philly to be with my little guy. I can't get there soon enough. 

Thank you for those of you who continue to pray for Cannon and our family. 

Home, sweet home!

Someone is excited to go home.

Even the neurologist was impressed. The past 24 hours we saw a remarkable turnaround. He was sick, in pain, crying and immobile. Today, he was up and walking, playing games, moving his head around. It was like a different kid. 

Cannon has read (or been read) every single one of your messages, played the videos and enjoyed the photos. When he came home, he had a full envelope of handmade cards from his classmates - we went through each one. Some of them made him laugh really hard, others were done with such care and love, and others were super creative and so impressive. We can't express how much we appreciate it all. The car ride home was a little rough. Those PA/NJ highways aren't exactly the smoothest ride but he managed a smile knowing he was headed home!






The recovery continues. His incision pretty looks good but he is still on a lot of medications (there are like 10). 


Since he had a patch sewn in, he needs to really take it easy and give it time to heal. That means no running around, no roughhousing... it will be a long 6 months of letting things heal.

The hospital is a very sobering experience and being there made us realize how lucky we are. Thank you for all of your continued support and love. We felt it all along the way. 

Bacon, please!

This morning didn't start out so great. Lots of pain, complaining, and tears. But as the day has progressed we have seen a lot of progress!

First he's getting out of bed and even walking a bit... followed by a 3 hour nap.

Then... we thought food might be a possibility. I have no idea what it is about post surgery with this boy, but he could eat POUNDS of bacon. I ordered two orders and he was like, "That's IT?" Wolfed it down and then ate a good size plate of pasta with butter, a chocolate milk, and seems to be holding it down.

If we continue on this path, there's a slight chance we could break the world record and come home tomorrow! Originally the doctor said we should expect Sunday or Saturday best case scenario but today we actually heard the word FRIDAY.  Someone is doing a happy dance!

More to come later on - with pics!