We are home!

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 act again.  Each intervention carries it's own set of complications and possible consequences.

Gabby's main complication from her first surgery is hypopituitarism.  This means that there is a decrease or absence of one or more pituitary hormones.  She is deficient in both TSH  (thyroid stimulating hormone) which controls metabolism, growth and brain development and ACTH which produces cortisol which helps control blood sugar and blood pressure and helps us deal with stress and illness. 

The TSH is a simple synthroid pill taken once a day.  The cortef is a little more finicky depending on her stress level and her health.  We have instructions on how to deal with these and need to be sure she takes her pills on time, everyday as ACTH deficiency can be life-threatening but is easily treated with proper medication management.  We also have emergency injections for her in case of emergency. 

For now we are headed back up to the Stollery tomorrow so Gabby can have her stitches removed and meet with the ophthalmologist.  Her double vision is gone and her one pupil is still slightly dilated but this can still clear up over the next few weeks as her brain heals.  She will need glasses but we will not worry about that for a few weeks until she is fully healed as her prescription may change.

Abby plans on returning to school early next week and we will have to see how she does.  Fatigue is a problem but she will be able to attend for as long as she can and hopefully that time will increase each day till she has the endurance to stay for the whole day.

Comments

Post a Comment

Popular posts from this blog

Gabby's letter to her grade 5 class

Image
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...
Read more

What is being monitored

Image
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...
Read more

Going Home! (Hopefully!)

Image
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...
Read more