In all the races that Mary ran, she never had a false start. Mary had the 400m race down to a science. But she was always trying to improve and perform better. If you know track, you either love the 400 or you dread it. It’s tough. Mary learned over time that you begin the race with a strong start. Hold back during the first curve~even though everyone else is pushing ahead. Pick up your stride on the first straight away but don’t give it your full speed yet. As you head into the final curve, kick up your heels and give it 100%! This is where you can almost see the ‘pianos falling’ on the other runners’ backs. They gave it all they had, too soon! They didn’t leave enough steam for the toughest part of the race. On the final stretch kick it up even more and finish strong!
We didn’t have this last ‘run’ quite figured out yet. Mary’s ‘team’ probably pushed her too soon, too fast and she wasn’t quite ready to go into the next ‘curve.’ The most frustrating part is that we are all realizing that instead of the 400, this is actually much closer to a marathon. And don't tell Mary, but we are not even out of the starting blocks yet…
From the first day that Mary was out of the ICU and on a regular floor, she started to gradually go downhill. We were hopeful at first~she even had a few visitors and ate some real food. Her nurses didn’t need to make their neuro checks as often and she was off of all IVs.
Catherine stayed the first night and it was difficult. Mary struggled with pain, increasing dramatically and by late afternoon she was in agony. We had seen her in pain all week but not to this degree. We took 90-minute shifts due to pure exhaustion. Every minute with her, still, is devoted to reducing pain and agitation. We try cold, heat, ice, massage, music, reading aloud…
On day 2, we escalated our concerns and we were heard. She had a new CT scan. She had a few mild seizures and her heart rate dropped a few times. She was looking worse to us in every way. During that sleepless night with Phillip and Jessica, she was transferred back to the ICU where the nurses could keep a closer watch.
A characteristic that is highly sensitized for Mary during this time is her honesty and intuition. Be prepared! She will tell you exactly what she thinks without any filter or sensors on! Sometimes we prepare people and sometimes we just cross our fingers that she won’t embarrass or offend anyone! She is also able to 'read' a person within 3 minutes of them entering her room. And guess what? She is almost always right on! She can sense it by how they interact with her, and even by their simple mannerisms. By the end of a shift, we realize~wow! She was so right!
Fortunately, Mary has truly had amazing care. She is loved by all of the staff. We now can’t walk the halls without a warm greeting and concern for Mary.
We have to be careful about how we are with her too. If she senses for even a moment that we are sad, discouraged, or upset~she senses it and calls us on it.
‘Mom! What is wrong? What is wrong?
‘Oh nothing ~I just have something in my eye...’
Rules! Guards! Fools! OH MY!
Sorry to be blunt, but we all hit a wall yesterday.
20% of my stress every hour of every day in the ICU, is actually trying to simply enter the ICU. There is a desk that is similar to a ‘guard hut’ at a campus or military base. You must check in there. Then put a sticker with your patient’s room number on it. Then the volunteer (bless their aging hearts) calls the ICU nurse. Then they ask for approval for you, the mother who has been here for 8 agonizing days, to enter the gates to go be with her daughter! “And please turn off your cell phone.” Yeah right.
Are you feeling stress in your forehead yet?
Then after they get an answer, they slowly walk around, use their key card, the doors open, and they walk you to the room. AHHHHHHHH!
So imagine if you’ve been in her ICU room for hours and have to use the bathroom, make a call, get a drink or eat? Is it really worth that process above? Just ‘hold it’ as long as you can.
50% of my stress each day happens twice: the ‘changing of the guards.’ Shift change is between 6:30-7:30 AM and again from 6-7PM. Every day. She gets a new nurse and new CNA every shift. Sometimes, we are lucky and have a repeat of a nurse that she has loved before. Sometimes~not. I anticipate it every shift. I anxiously wait to meet them and see how she interacts with them. She will ‘tell us’ within a few minutes if it’s going to be a good shift~or not.
During one of Mary’s most difficult hours of the last 24, she couldn’t be relieved. She didn’t recognize her dad. She was in tough shape. She pushed the ‘Nurse’ button. After a few minutes, some random staff member appeared at the door, hands on hips, ‘Uh—We are in the middle of a shift change here, sooooo…’ (Don’t bother us.)
Really? Really. Here’s a hint: don’t ever tell a 19 year old with a blood clot, AVM, and brain swelling on day 8 in the ICU, ‘We’re busy.’ Especially in front of her dad.
Mary’s doctors are amazing. I wish it were not inappropriate, because I would hug them. Someday I will. They are saving her life. They are communicating and teaching us more everyday about what Mary has and why it is causing so much pain and what challenges lie ahead.
We can now tell you more about the brain than you may care to know. But it really does help to get inside her head! Literally.
She continues to have a gradual increase in swelling (this will peak at day 14). But no new bleeding. We just have to wait for time to pass. Doctor said today, her brain needs to sort of ‘shut down’ and hibernate and have some time to heal itself. The blood clot will shrink in about 6 weeks. The AVM will be dealt with in August with Cyber Knife radio surgery.
‘Not here. Or here, so much. But right in here.’
If you can pray for one thing for Mary, it is for her pain to decrease so that she can sleep and be more comfortable. She gets really frustrated with the pain. She says it’s like the strongest throbbing migraine you’ve ever had. 24/7. This could be long term.
It’s because her brain is swelling so much that it has shifted off center to make impossible room for that blood clot and swollen tissue. This massive pressure causes her extreme, constant pain. They can’t mask it with too strong of pain meds because they will lose the ability to check her for alertness and neuro responses~which are the only measurements they have to make sure that she is not declining.
‘I love you so much.’
Every hour we spend with Mary, we realize just how meek and humble she is. She shows gratitude to every person in her room. She compliments every person who comes close to her. She asks her doctors, ‘Now--how are you doing?’
She had difficulty sharing her feelings with others before June 19. She rarely said ‘I love you.’ Now, she tells us frequently!
Mary is a new person! But really, she’s changing all of us.
Peggy and The Fam
*I am very sorry but because of Mary’s discomfort and critical status, we are holding off on visitors until she is much more improved. Please text, email or send a card. We love to read all messages and hear of well wishes. None will go unnoticed.