Update post MRI

 We have a update regarding Madilyn: 

This morning after waking up well and at her normal, Madilyn suddenly got an intense headache and started puking. 911 was called and by the time paramedics arrived Madilyn wasn’t responding. She was breathing normally but looked very unwell. Her eyes would open at times but unaware of anything going on around her. I carried her from the house to the ambulance and she was completely limp.

She was brought to Wingham hospital where they confirmed she had another brain bleed from the tumour which induced seizure(s).

After meeting with the healthcare team on Feb 24 (the day of her MRI) it was decided that Madilyn’s goals of care are comfort and to have her home through her end-of-life process. Home care was starting to be arranged. But after the events of this morning, it seems like the timeline for all this was accelerated.

Madilyn is home with us now. She can’t move much on her own and is barely able to talk or swallow. Her vital signs are stable as of now.

Given the unpredictability of a bleed, it is very hard to give a timeline for her. She may “perk up” with the increased dosages of her meds, but there is also a chance she may start “forgetting” to breathe given where the tumour/bleed is in her brain stem.

We are meeting virtually with the healthcare team again tomorrow morning and home care is on its way to having everything in place so Madilyn can stay at home.

Adam

Comments

Post a Comment

Popular posts from this blog

The First Post (December 18)

Image
"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9  As God's children, we confess that his ways are higher than our ways. And yet, when something like this happens, it's impossible for us to understand what his purpose and plan are for Madilyn. Why? Why is God allowing such a young child to face such an awful disease? Countless tears and prayers and laments have gone up to God's throne with these questions in the past week. Although our human minds cannot possibly understand God's ways, we strive to take comfort in knowing that he is King. He is sovereign, and has chosen for himself many people to be his sons and daughters. That is exactly what Madilyn is. She is a daughter of the King. Yes, she is also a beloved daughter, sister, granddaughter, cousin, niece and friend to many here...
Read more

A short update

 We just finished the virtual meeting with the healthcare team. We are working towards having everything in place for Madilyn’s end-of-life care. They suspect Madilyn will have only days to maybe a few short weeks left here with us. Shes more awake and “functioning” today. She really wants to go to McDonalds so that’s our goal for today!
Read more

Biopsy is Done! Looking Ahead... (December 20)

Image
Madilyn's surgery (biopsy) was successful! After a day under observation in the PCCU, Madilyn was able to head back upstairs to her princess hospital room. They were able to take samples of the tumour and send them off to be analyzed. The results will hopefully identify the type of cancer/tumour and allow for more targeted radiation therapy. While the results won't be ready for a bit, they will still be starting radiation next week. For next week, the doctors are planning to do radiation on Monday, Tuesday and Wednesday (Dec 22-24). If Madilyn responds well to radiation and is healthy enough, she will be allowed to come home for a few days over Christmas (Dec 24-28). Radiation would continue on the 29th.  Please pray that Madilyn would respond well to the radiation and that the family would be able to return home for these few days! After almost two weeks in the hospital, everyone is ready for a break, especially Madilyn. It would be such a blessing to be able to spend Christma...
Read more