Fred In My Head 2017

We were able to come home on the 28!  It is so nice to sleep in our own beds and have things to do!  I have to admit there was a feeling of security at the hospital that I don't feel at home!  All those doctors and nurses just a moment away should anything go wrong and with the knowledge of what to be concerned about and what not to worry about.  The hospital gave us lots of ways to contact them but still... So a lot of people have been wondering what the plan is going forward.  As of this moment the plan is to wait and see.  Let Gabby recover from the two surgeries and scan her again on April 20 (which happens to be her 11th birthday)  This scan will help determine the next course of action.  Radiation therapy is a possible option or if all looks well they may just wait and see - scan her again three months later and every three months after that till they either see regrowth of the tumour or something else that makes them decide they need to ac...

Yay!!!!!  Whoo hoo! We are very excited to finally be going home tomorrow!  We have decided this is the worst two week all inclusive holiday ever!  That being said the service was amazing the staff is awesome and the concierge wonderful.   We have had a crash course in the function of the brain, the hypothalamus, pituitary gland and endocrinology.  We've learned a ton of acronyms PICU, ICE, ICP, EVD and expanded our vocabulary to include some really impressive medical terms like craniopharyngioma, endocrinology, and hypopituitarism.  We've learned that nurses love gifts like urine, stool and farts and get really excited about them!  We learned that pet therapy dogs are the best animals ever and that they can even take our pain away!    We've learned that the Stollery Hospital is the best place to be when you are a sick kid, has the most amazing doctors and that our team ROCKS! We've learned that so many people love Gabby and will do...

Today we were able to go outside and get some fresh air!  It was so nice to sit in the sun!  We also got out of ICE and into our own private room!  Dr. Souster says we will probably have our training tomorrow and hopefully go home Tuesday!  Gabby is doing well, up and about with Logan having lots of fun!  It is so nice to see her having fun and laughing with him.  It is exactly what she was needing.  I have a story about a little excitement that happened at the house while Jerry was in Banff and I am in the hospital with Gabby!  Jerry and I were gone, so the three oldest kids were left to fend for themselves.  Parker had the van to drive everyone where they need to go and has been playing chauffeur.  Thursday morning Parker and Emma had seminary at 6:45 am. and after they left Logan woke up and heard someone upstairs!  He sat and listened for a while, then since he was home alone, he snuck out of his room hoping there was a phone d...

We got the pathology report back and the tumor is benign!  They were pretty sure that is was but it is good to know for sure.  This means that even though the tumor may grow back it will not spread to other parts of her body. Doctors are still monitoring the fluid in the front but she had not thrown up today so that is a good sign.  Gabby needs to have 24 hrs of everything being perfect before they send her home.  That means no headache, no vomiting, no fever, no dischage from the incisions, level sodium and level hormones for 24 hrs.  We are hoping we are into that 24 hrs.  We also need a day of school for me which will hopefully be Monday.

Gabby started throwing up this afternoon and complaining of a headache in her left ear again.  Wendy ordered a CT scan and they found that Gabby has some fluid built up in the cavity at the front of her head that had filled with air during the initial surgery, the air is normal after this type of surgery and they are hoping that this fluid will reabsorb and so they are just going to keep an eye on it and monitor her.  This means that we will not be getting our own room as we had hoped - we will be staying in ICE.  If the fluid does not reabsorb on its own they will have to relieve the pressure through surgery.  One thing that the CT scan showed is that her shunt is working well, is placed perfectly and draining the ventricles as it should so that is good to know. 

Gabby loves the pet therapy visits they are the thing she looks forward to the most!  Even when she has a headache or is napping she always wants to have them jump into bed with her! 

So surgery took a little longer today (4 hrs) than we thought but it was a success!  Got both the shunt and a PICC line in so that they can draw blood for the hormone testing every 6 hours. We went for a walk and it is great to be able to get out of the bed and move around again! Hormone stabilization is the last thing (I hope!) that is keeping us here, along with assessment for whether she needs support for occupational therapy (OT) and physical therapy (PT) or if we can just do that at home.  She does get tired very easily and has a small bit of palsie in her hands but they are hopeful that it is just a temporary thing and that it will clear up in the next little while as her brain heals. Overall a pretty good day and a step closer to going home!

Gabby is in surgery and should be out in about 2 hrs.  She is looking forward to being able to move around!  They are worried about diabetes insipidis again and the fact that she is always hot.  This indicates possible damage to her hypothalamus so they are also running the endocrine tests during her surgery and installing a picc line which means they can draw blood every 4 hrs without having to poke her!  This way they can closely monitor her hormone levels.

So they are removing Gabby's EVD tomorrow and putting in a shunt.  They were going to leave it for another day but are a little concerned about her getting meningitis.  Anytime things can get out of the brain they can also get in so the longer the EVD stays in the higher the possibility of getting infection.  The surgery will only be about an hour to an hour and a half and recovery is usually only a day or two so they are saying we should be able to go home by Sunday.  This will also relieve the fluctuating ICP and remove concerns of complications due to the high intercranial pressure.  I will be going to "shunt school" later today but basically they will put a pressure valve behind her ear and a tube from her brain into her tummy to drain the excess fluid.  They say this can last about 6 years and then they will have to tweak it once she has grown.  Once she has stopped growing a shunt can last up to 20 yrs.  We still do not know what time the su...

Yah!  We can have non family visitors now as long as there are only 2 at a time!  Feel free to come for a visit. 

We had a little bit of set back today, Gabby was doing so well that they decided to clamp off her EVD overnight to see if she could go a whole 24hrs without her ICP climbing above 25.  Unfortunately she couldn't, which made for a long night because every time her ICP went above 25 the alarms went off.  This happened about 6 times between 10pm and 4am - till they unclamped it.  Since then though, she has been good and they have decided to do an hour clamped and 2 hours unclamped then 2 hrs clamped and 2 hrs unclamped etc to see if she can be weaned off it or if they need to put in a shunt.  The more days she is unable to to auto regulate the more likely she will need a shunt.   The day was good though and we had some family visit which was nice.  Also we met another pet therapy dog, a five year old dalmatian.   He was super soft!  We can also have visitors now that are not family but are still limited to two at a time.   It seemed like a ...

Dear 5K. the cards that all you sent me gave me a big smile today. I loved every single card. I am doing well at the Edmonton children's Strollery hospital. Mrs. K came to visit me today and she gave me the cards from everyone. She gave me the book that we will be reading and I am excited to read it!  If any of you want to talk to me you can email me any time. I am not busy but tomorrow they are going to do some hormone tests tomorrow but other than that I am not busy and I will not be busy. So I will have plenty of time to respond to the emails.  Thank-you very much for the cards I read them all at least twice. I am on a no sugar diet because of my surgery, which is very hard for me because I was given plenty of chocolate. I was also given plenty of stuffed animals. When ever I look at them I smile.  From your friend Gabby March 19th 2017.   

Gabby received many visitors today in ICE.  She was more talkative today than the past few days, but still pretty quiet. Her readings are looking good.  They are monitoring hear intracranial pressure (brain  pressure) right now to see if ti is possible to take out the EVD (brain drain).  Once that is removed she can go to another room without 24 hour direct observation.  This also means she would get to go out into the hospital in a wheel chair rather than staying in the ICE ward all the time. Gabby made some cards today, and was very happy to have her report card hand delivered by her grade 5 teacher, Mrs. K. We had our parent teacher interview right there.  Mrs. K. also delivered letters from her class, which got Gabby pretty excited.  She decided she should try some school work and write a letter to her class. Tomorrow Gabby will have a thyroid test, as that is at the top of the endocrinologist's worry list right now.  She will also hav...

Today we started out with good news from the doctor that Gabby was off the infusion for the DI and that she could move up to the intermediate care environment unit (ICE).  This doesn't mean that we are out of the woods regarding DI but it is a step in the right direction.  They moved Gabby up at 10:30 am into ICE on the 4th floor and we had a pretty easy day.  We got a few visitors but that was about all the excitement we had after the move.  She slept a lot more today which was good.  The next thing we are waiting for is the removal of the extraventricular device or EVD.  This is the tube that drains the excess cerebral spinal fluid (CSF) out of her brain from the surgery and prevents swelling. If she can regulate the CSF on her own they will pull out the EVD and she will be able to move into the pediatric unit (and we can have lots of visitors again).  If she cannot regulate the CSF on her own they will have to put in a shunt that will drain the exc...

So Gabby had a really good day today and is exhausted!  We have been asked to keep visits to family only until we are out of the PICU and onto the pediatric care unit.  We know there are so many of you who love and care for Gabby, and would like to come and see her.  We will be sure to post on the blog as soon as we can have you all come to visit and are hoping that day is coming soon!  We feel your love, prayers and support and thank you for it!  Please keep it up, it is working!

Gabby had a pretty great day today!  We started the day off with a smile a donut and pancakes!  Gabby was up bright and early and the nurse gave her a donut for breakfast before Mom even got up!  Gabby's doctors stopped by bright and early and said how amazing she was doing.  We were a little sad that we couldn't move out of the PICU today but if that meant not being poked every 4 hrs we are good!  We had lots of visitors today including Tempe!  Tempe is an Australian Labradoodle that volunteers at the hospital as a pet therapy dog.  Gabby was able to get out of bed and sit in her wheelchair for a while too!  At the end of the day we counted up all our  visitors and including Tempe we had 18 visitors!  Since we are in the PICU we could only bring them in two at a time. Gabby only took a short 20 min. nap today and was up for the rest of the day.  She is pretty tired now and I think will sleep really well tonight!  Hopefully tom...

So this morning it sounds like we won't be getting a room.  They are needing to take blood every 4 hours and she has an arterial line which she can't have when she goes upstairs.  They can remove it and send her up but that would mean poking her for blood every 4 hrs!   Not fun!  So maybe this afternoon depending on what happens with the DI. (Diabetes insipidis)  As you can see she is doing well and getting back to herself.  We are hoping today the therapy dog will make a visit!!!

Gabby is still sleeping a lot which for right now is the best way to recover.  She was able to get out of bed, stand and get into a wheelchair for a bit.  The nurses say it is amazing but it is so hard to know as a parent.  Her answers are usually a little slow and just one word or a slight nod or shake of the head.  She did make a joke this afternoon.  It was so nice to hear her sense of humour.  She was able to go into the hall to watch fish swimming around for about 20 minutes.  It is good to know that when she is awake she wants to do or see something, although the energy doesn't last long. The screen pictures shows they are monitoring  heart rate, pressure on the brain, blood pressure,  breaths per minute, and blood oxygen levels.

What is being monitored Gabby is having regular blood samples taken in order to monitor a variety of hormones.   The taking of blood is called phlebotomy. She was quite sleepy over the past 24 hours, which is completely understandable, but seems to be a bit more alert this morning.   Her throat is sore from the breathing tube, so it may be a day or 2 before she starts to talk much.  She is hungry.  The nurses are calling her a unicorn patient - they just don't exist. Currently she is being monitored for diabetes insipidus, where the kidneys don’t reabsorb water.   This is related to the function of the Hypothalamus. Where is my hypothalamus? http://www.yourhormones.info/glands/hypothalamus.aspx  The hypothalamus is located on the undersurface of the brain. It lies just below the thalamus and above the pituitary gland, to which it is attached by a stalk. It is an extremely complex part of the brain containing many regions with highly sp...

Morning after surgery Gabby spent the night sedated with a breathing tube.  Her numbers look good and they took her for another MRI at 6:00 this morning.  Right now they are in the process of waking her up and removing the breathing tube.  She is on pain medication. They will continue to monitor hormones.  The pituitary gland manages many things for the body and they want to make sure it is producing the hormones she needs: What does my pituitary gland do?   http://www.yourhormones.info/Glands/Pituitary_gland.aspx The pituitary gland is called the ‘master gland’ as the hormones it produces control so many different processes in the body. It senses the body’s needs and sends signals to different organs and glands throughout the body to regulate their function and maintain an appropriate environment. It secretes a variety of hormones into the bloodstream which act as messengers to transmit information from the pituitary gland to distant cells, regulatin...

Update now that Gabby is out of surgery: It went better than expected.  The surgical team originally thought they might get about 50% of the tumour our and then have to do radiation.  They were actually able to get around 80% of the mass out, including the most sensitive areas.  It took about 8.5 hours. More will be figured out in the next few days, but for tonight she will be sedated with a breathing tube. With so much of Fred taken out they will consider monitoring the tumour for a while with MRIs every 3 months for some time. They need to monitor her recovery and her hormone levels to ensure no damage was done to the pituitary or the hypothalamus.  If all goes well she should be able to come home in about 10 days, and back to school when she feels up to it. So, it is quite positive news.  Thank you everyone for your prayers and generosity.  We currently have more food than we know where to put, and there are only 3 or 4 of us home right now. I ...

Here are some of the details for Gabby’s surgery: Surgery will start at 7:20 Tuesday morning. It looks like they will need to go through the top of her head.  The surgeons feel going through a single hole should work, but if needed they may do a wider area for entry. The surgeons feel that they should be able to get all the soft tissue out, and will work on the calcified material that is attached to the Pituitary. They are going to x-ray her arm to see if the growth plate is still open.  If it is, Gabby may get a growth spurt once the tumour is cleared.  Gabby is hoping. There are 3 or 4 surgeons, plus a hormone doctor to monitor hormones throughout the surgery.  It is expected to take about 6 hours.

Gabby wrote the following letter to her Grade 5 class Dear 5k, I have some bad news for you. I found out that I have a craniopharyngioma brain tumour. The doctors say other than the tumour I am heathly. This makes it easier for me to heal after my surgery. I am having surgery on Tuesday. This tumor is really rare only 1.4 people in a million get this type of tumor. This means I really am one in a million! The doctor calls this type of a tumour a booger instead of a creepy crawly because it does not spread throughout my body and that's good news! It has been in my head for a while, maybe even two or three years. Right now it is about the size of a kiwi which seems pretty big but they found it early! I will not be at school for a while because I will have to recover from my surgery after Tuesday. We named my tumour Fred because when my mom said brain tumour she started to cry! She asked me what I wanted to name it and I said Fred. So we call it Fred in my head whic...

How we got here part 2 Dad's view  The Stollery Children’s Hospital is a part of the University of Alberta Hospital.   It specializes in treating children’s health concerns and has a full support network to help the children and their families through some of the most difficult times in their life. Mom and Gabby got back from Red Deer Thursday night and we started packing.   The pediatrician in Red Deer said we would be there for probably about 4 days.   How little we knew.   We talked with our 3 older kids about caring for the house.   They didn’t have school so our 13 year old went to stay with friends while the other 2 were scheduled to work a bit this weekend.   We had just bought a bunch of items that had frozen in the car with running from the ophthalmologist to the Red Deer hospital and waiting for the CT scan. Friday morning we ate before 6:30 so we could be on the road before 7:00 a.m.   We were supposed to be at th...

Dad's  point of view - How we ended up in the Stollery Children's Hospital Gabby has been getting headaches for about 2 to 3 years, starting as earaches but getting worse and going more into the center of her head.   Mom had migraines growing up so we, and doctors we visited, treated the headaches as migraines.   Her ears were clear and there didn't seem to be any other problems.   So she has had migraines since grade 2. Otherwise Gabby has been a quite healthy 10 year old.   She does well at school, has good friends, helps her teachers, plays piano, guitar and ukulele.    She has always been on the small side, but still quite active doing school activities, swimming and playing on the trampoline at home with brothers and sister.