Friday, September 2, 2016

Surgery next year?

Dexter had an orthopedic surgical consult yesterday.  They did an xray on his hips to see if he needs hip derotation surgery.  They typically operate when the hips are displaced by 50%.  Dexter's hips are displaced 45%.  This means they will see him again in January instead of next September to reassess.  They asked if Dexter is experiencing a lot of pain.  He was complaining of pain for the last few months.  However, his recent shunt surgery left him inactive for some time and the pain either subsided OR was trumped by the pain in his head.  If the pain persists they will consider doing the surgery as well.  Hip derotation surgery is VERY invasive and can take up to a year for full recovery.

Friday, July 29, 2016

Recovery update

July 29 - Dexter has been home for almost a week now.  He still has occasional pain and discomfort that leaves him inactive for the day, but for the most part, he is recovering well.  Dexter's appetite has returned and his scar is healing nicely without any inflammation.  He has not had any fevers.  I have read some personal accounts, written by adults with hydrocephalus,to gain insight into the "feeling" of having a shunt.  Many accounts have stated that programmable shunts feel different than regular shunts.  Is that why Dexter says he has pain? There has also been mentions of minor discomforts--associated with all kinds of shunts--such as kinking or pinching of the tubes, occasional light-headedness, and buzzing sounds emitted from the device.  I cannot say for certain that Dexter experiences ANY of these symptoms, but it is possible that what he describes as pain is associated to these experiences.  For example, Dexter was sitting in a shopping cart as we entered Walmart and complained that the carpet in the entry way made the shopping cart bounce too much and made him sick.  Dan agreed he looked "off", but Dexter recovered once we were home,  Was it the weather? Was it the motion? Was it because the programmable shunt drains consistently? I think it will be awhile before Dexter is able to describe what he is actually experiencing.  In the meantime, we will watch for concerning symptoms.  Other than that, life is pretty much back to (our) normal.

Sunday, July 24, 2016

July 24

Dexter had an uneventful night.  There were no fevers and no complaints of pain.  He ate a decent breakfast but still no where near his typical appetite.  Dexter still doesn't look well.  He is pale and easily fatigued.  The doctors ran another blood test with the C-reactive protein included.  This is a marker in the blood that indicates inflammation.  Naturally, Dexter will have a little bit of inflammation due to his recent surgery, but they are still tracking this marker to see if there is any increase (or NO decrease).  Typical levels of this protein are roughly 0.5-1.0.  When Dexter first returned to the hospital his CRP level was at 5.  We will see if that number changes at all.

We are sitting at a stale mate right now.  The doctors do not really have a direction for treatment but they recognize that Dexter does not look well.  It is understandable that we are concerned--Dexter just had brain surgery! Of course he will be tired.  Of course he wouldn't be 100% right now.  What is concerning is that every other surgery he has had, he has bounced back quickly.  So the question is: Is he just taking longer to recover, or is there something else wrong? If there is something else wrong could it be masked by the fact that he just had surgery? Should he be discharged to be observed at home? Should they keep him admitted and continue investigating?

Dan took Dexter for a walk.  He perked up a little bit when he saw the motorcycles and exotic cars parked on the street for a fundraiser.  He was a bit unstable and had difficulty going up and down the stairs (more so than usual).  But when he returned to the hospital room he was completely exhausted.  He complained of head pain.  He refused to eat.  Dan is trying to keep him motivated.  He will take him downstairs to the gift shop for a toy (he did so well enduring more tests and needles).  He will take him to the playroom too.  We want to see if we are able to get him out of his funk and raise his energy a little bit.  Who knows how much of it is surgery,

Again, with shunt revision surgery there is a high risk of infection that can occur within roughly 6 months.  Therefore, if Dexter comes home and exhibits fevers and nausea or headaches, we would have to take him back to the hospital.  Better to be safe than sorry.

***UPDATE***

Dexter's C- reactive protein went down.  Therefore his inflammation went down.  Doctors decided to discharge Dexter.  We have an extensive list of symptoms that would require him to go back to the ER.  If he has a fever of 38C we are instructed to take his temperature every hour thereafter without Tylenol.  If his temperature reaches 38.5 we must bring him back in and bring discharge papers to speed up the process.  Dexter will not be able to go back to summer camp as he must refrain from strenuous activities, amusement parks, and rough housing.  He cannot go swimming until further notice as well.

Dexter doesn't want to talk.  He just wants to play Lego.  We are giving him his space

Saturday, July 23, 2016

July 23

Dexter is sick and tired of hospitals. He is angry and frustrated. He understands why he needs to be there, but he isn't cooperating. IV placements have become a wrestling match. X-rays and scans require adult intervention. Staff questions get brushed off. I don't blame him at all, but it really makes their job much harder. Every test is coming back clear. His cerebrospinal fluid is clear. His blood test is normal. His X-ray shows that the shunt is intact. The MRI shows that ventricles are the proper size. His urine test is fine. His vitals are normal. Dexter is not reporting any pain or nausea to the staff, but will disclose this to Dan. When asked about it, Dexter said he doesn't want to tell them because he is scared. They have nothing to go by, and Dexter is holding back how he feels because he doesn't want to be manhandled, poked, and prodded. I understand. I really do. They will hold him for one more night under observation, but with nothing to go by they are leaning towards a rare case of post-surgery recovery. We brought him in for all the right reasons. And regardless of what happens during this hospital stay, we are encouraged to bring him back in for the exact same symptoms.
Dexter has eaten 1/2 a bagel and 1 hash brown today.

Friday, July 22, 2016

Going back to Sick Kids

Dexter didn't eat until 3pm.  He had a fever of 38.1 at 1pm.  We gave him Tylenol.  He had a fever of 39 at 6pm.  We gave him Tylenol.  He had a fever of 38.6 at 930pm.  That is when he puked.  That is when we called the neurosurgeon fellow on call.  We told him what was going on and he said to bring him back in.  They will most likely tap the shunt.  This means sticking a needle into the reservoir section of the shunt (just under his scalp) to extract cerebrospinal fluid and test it for infection.  They may also run more scans.  We aren't sure what to expect.  This could be infection.  Or it could be that the new shunt is draining TOO MUCH fluid.  He will definitely be admitted overnight, but after that we are not sure.

More information

In light of Dexter's recent brain surgery, a few people have asked me to explain what hydrocephalus is.  I am not a medical professional, but I can link you to THIS video to help explain it.  

Hydrocephalus can be difficult to explain to people who are not familiar with this condition. Many people forget that this is life-long condition with no cure. Dexter has now had 8 brain surgeries as a result of it, and will definitely see more in his lifetime.
(There is also a program on TLC network this Monday July 25th at 9pm. It's called "My baby's head keeps growing" and it profiles 3 kids with hydrocephalus).  I only mention this program because I just found out about it today and will be recording it myself.



Thursday, July 21, 2016

Finally home after one week

July 21 - Dexter only had one fever last night.  He didn't complain of head pain (except for the incision itself) and was even able to take a walk around the hospital.  The nurses took out his IV, gave him some laxatives to help his bowels move again from surgery, and gave him more Tylenol.  Dexter still wasn't eating much, but everything else looked great! He was in good spirits.  He was playing.  And so, we were discharged.

Our follow up appointment with neurosurgery is in September.  He will have another MRI around that time to provide the doctors with a baseline image to compare to for future complications.  His scar takes up the right side of his head.  We don't need to dress the incision unless he picks or pokes at it.  He will be able to have a bath tomorrow using non-scented gentle soap.  He may be able to return to summer camp--we will have to negotiate the details as he cannot do any activities that involves potential physical contact (like sports, trampoline, riding bike, etc..) until he is cleared by neurosurgery.

His new programmable shunt can be affected by MRI scans.  So we were told any future MRI scans must be done at a hospital that has a knowledgeable neurosurgery staff (so that they can re-program it after the scan).

Dexter and I had a nice conversation when he looked in the mirror and saw his half shaven head and scar

DEXTER: "I can't believe they had to cut my head open"
ME: "I'm sorry bud"
DEXTER: "why?"
ME: "I am sorry they had to cut your head open"
DEXTER: "Meh, I'm okay with it"
ME: "Really?"
DEXTER: "Yeah"
ME: "So how do you feel?"
DEXTER: "Good"
ME: "I am not asking if you feel sick this time.  I want to know if you are happy, sad, tired, angry"
DEXTER: "I'm happy"
ME: "What made you happy"
DEXTER: "That I got a new shunt"
ME: "Does your brain feel different?"
DEXTER: "Yeah"
ME: "Good different or bad different?"
DEXTER: "Good different"
ME: "I'm glad sweetheart"

Thank you to the staff at Sick Kids Neurosurgery.  Thank you for believing us when we said something was wrong.  Thank you for thoroughly investigating.  Thank you for fixing the shunt.

Going forward, we just need to watch him for the same signs of neurological distress.  He could develop an infection from the surgery anytime in the next 6 months.

We are all exhausted and emotional.  Tonight we are having a camp out in the living room.  Pizza, popcorn and some movies.