Last Days of Summer and School!!!!

Family Camp

After seven weeks of ongoing fevers, dealing with the PICC line, and monitoring Zoe constantly- Zoe finally started to feel better. Despite fevers, we decided to go to family camp at an Easter Seals camp. We had a great time and Zoe's fevers finally started to go away. The whole week was full of activities and there were tons of people willing to lend a hand. The girls had a great time and we plan to return another year.

Zoe rode in a canoe for the first time!

We were never sure how to get Zoe into a canoe but they had these bean bags at camp that worked great. Zoe and Gavin canoed over to the beach while Ailsa and I drove there. We played in the sand for a bit, visited with other families, and then we all had lunch there. After lunch, Zoe and Genevieve canoed back to camp while Gavin drove with Ailsa.

First Week of School!!!!

Zoe started at Sunny View school and is loving it! The teachers have a great way with communicating with us and we are all getting used to each other and the school routine. Zoe comes home excited and smiling every day.

Zoe signing Ailsa on the first day of school. The only complaint Zoe has had about school so far is that she misses Ailsa and wants her to be her school friend.

Zoe's first bus ride! Zoe gets picked up around 8am every morning and dropped off around 4pm. So far she has been coping well with the long bus ride. It helps that she is in love with her bus driver!

Why Can't Ailsa go to School?

It has been difficult for Zoe to understand (or perhaps she understands but wants a different answer) why Ailsa can not go to school with her. A few days before school started, I put Ailsa in the exersaucer for the first time. Zoe became very excited and was rapidly signing about Ailsa. It took me a while to figure it out but finally I figured out what Zoe was saying:

"Ailsa standing, Ailsa walking, Ailsa Zoe school friend."
Translation: "Ailsa is now standing which means Ailsa can use a walker which means Ailsa can go to school with me and be my school friend!" Zoe told me I was correct with the translation by smiling, laughing and repeating her signs over and over and over again over the next few days. When she gets home from school she still runs over to Ailsa to touch her hands and face and laugh with her. Hmmm, have you noticed I haven't posted anything about her missing Gavin or me?

Mom's a Canuck!

After living here for five years and having permanent residency, I finally had a chance to take my citizenship test in June. It was actually the day before Zoe got really sick and I kind of forgot about it with everything that happened after. In late August I got a notice to appear to take my citizenship oath on September 9th. We decided Zoe would have a better day at school (they are not big fans of small children vocalizing, playing loud toys, and throwing those loud toys off of their trays during the ceremony). Gavin and Ailsa went with me and Ailsa was very well behaved- she slept through most of the ceremony and then was invited to sing the national anthem at the front of the room. I noticed they were picking all the cute people/kids for the photo op. So who knows, perhaps Ailsa and Gavin will appear in some Canadian Citizenship pamphlet or webpage somewhere. Which is kind of funny since neither of them was there getting their citizenship!

Look at those good looking Canadians!

Getting Better

Zoe has been feeling better, getting stronger, eating better, sleeping better, etc in the last couple of weeks. We went away last week to a cottage that someone has donated the use of to Sick Kids families. It was beautiful and so fun to get away. Zoe did such an amazing job walking at the Petroglyphs park- she walked 400 meters! We had an appointment with her complex care team today and we are all hoping for a healthy and happy winter.

Just One More Picture

I can't resist posting this one because it just cracks me up....

Zoe: "Mom, if you take one more picture I'm going to . . .

Ailsa: "Don't do it sister! She only tortures us with so many pictures because we are so cute and she loves us so much!"

Small Victories

Today is not a good day. Zoe is very sleepy and fussy. I just fed her a lunch of jarred baby good because she does not have the strength to chew right now. I held her head up with my left hand and shovelled food with my right. As I held her forehead, I realized she has a fever again.

Some days are better than others.

It has been six and a half weeks since Zoe almost died.

Six and a half weeks of constant monitoring and constant worry.

It's beginning to take it's toll.

Zoe's lost weight. She's lost muscle mass in her legs and they are contracted more than before. What does it all mean?

We went camping last week and had to return home after a day. Zoe usually loves camping but was having a really hard time. She also started having a reaction to the tape holding her PICC in place. So we had to come home to take care of that.

While we feel disappointed, frustrated, sad, and angry that we did not get the vacation we desperately need right now, we recognize that we had to try.
Because this is the way we want to live our life- finding the positive moments amidst all this negative.

Which brings me to writing this post.

Someone asked me what I want to do to take care of myself during all of this and I knew the answer right away- get a massage, exercise, take a long, hot bath. Unfortunately, I literally do not have 30 minutes in a row to myself right now. So the next question is- what can I do to take care of myself right now?

It took me a while but I finally came up with writing. I used to write all the time. It's my way of processing and I can do it for five minutes at a time if that is all the time I have.

This is what I wrote today:

Small Victories

Small victories. That's what I'm going to focus on.

An hour spent outside doing physio. Nursing Ailsa with one arm and rearranging toys for Zoe with the other.

Fresh air. Sunshine. Vitamin D.

Tomorrow we will spend all day at the hospital. But today is ours. Zoe running around in her walker while Ailsa sleeps and I eat lunch.

So much focus on Zoe's health. Assessing skin condition, breathing, temperature, daily dressing changes.

The balance has shifted. Always before we focused on having a life. Having fun. Seeing the positive. Now it seems we struggle to get past all this medical. Just to get through the day.

That is not healthy living.

Have to get back to life.

To joy.

To laughing.

Just 'cuz.

How do we get there? From now to then? From here to there? From A to Z?

Zoe is more than a collection of symptoms. Her life has to be more than just this.

We know that. But how do we get there?

We start with small victories:
Zoe playing the keyboard while I just sit and watch.
Eight loads of laundry in two days.
A real dinner made even though Zoe will not eat it right now.
The sound of Zoe's laughter at our surprise when she correctly identified the star and hexagon.

Refocus on the good. Let go of the difficult. Stop thinking about what life could be like because this is our life.

And life is good.

Last Day of Preschool

Zoe's last day of Preschool was last Thursday. We decided to give her a break from school for August and she will start Kindergarten in the fall. We felt mixed emotions on Thursday. Zoe has outgrown what the school had to offer in the last few months but since she loves school so much, we had her continue going there. Even though we are very excited about Zoe's new school and know this is a good change for her, we were still sad to leave Ryerson behind. They had been so fantastic with Zoe and she loved going. It is hard to believe she is ready for a big girl school already!

Zoe signing friends Thursday morning before school. She signed the other day that she is all done with her friends at Ryerson and asked if she will have friends at her new school. We are confident Zoe will make lots of new friends. There was also a little girl at Zoe's new school on the day we took the tour who declared, "When Zoe goes to school here in September, we are going to be best friends." So at least we know she has one friend waiting for her.

A Mother's Right to Buy Matching Outfits

Yep, that's right, I am doing what my mother did and every mother before her- I am making my girls wear matching outfits. They looked so darn cute today when I dressed them up to go visit daddy at work. Gavin has worked 12 hours shifts for the last four days which means he leaves the house at 10am and does not get back until midnight. Zoe was really missing him today and just sobbed on my shoulder while signing "daddy." So we made dinner and went to eat with daddy at work. Luckily it was a slow day in the emergency room and Gavin was able to spend lots of time with us. Zoe was in a much better mood tonight after getting her daddy fix.

Speaking of daddy fix- I am absolutely amazed at how Ailsa really notices when Gavin is not around. She lit up when she saw him today and was chatting and smiling away. Gavin is much better at settling Ailsa to sleep at night since when I hold her all she wants to do is eat. We are all glad that Gavin does not have another shift until Thursday.

My two lovely girls looking cute in their matching outfits. The sock on Zoe's arm is to protect her PICC line. Thankfully, Ailsa does not have one of those to match her sister! Zoe was too interested in Ailsa to look up at the camera.

It's all fun and games until your sister bites your head. Zoe is trying to be gentle but gets overexcited at times. I don't think she actually hurt Ailsa but Ailsa obviously did not like Zoe's unique way of kissing her head.

Readjusting and Moving Forward

Zoe Health Update

Zoe continues to improve every day. She is still not herself but is full of smiles and laughter. She is very motivated to gain back the strength and skills she lost. We see her working hard again to feed herself, walk for longer periods of time, and stand on her own with balance support. We saw the OT and PT yesterday and they are both happy with how she is doing but did point out some areas where she has lost some strength and flexibility. So we will endeavor to fit her stretching and standing routine back into our very busy days.

Zoe still spikes fevers off and on and continues to cough up mucus from her lungs. We are doing lots of chest physio and have seen improvement in her chest. We had lots of medical appointments the last couple of weeks to look at what happened, how to prevent it from happening and how to deal with it when it does happen again.

What Happened?

We now know that Zoe had a bladder infection which caused the fever which caused the prolonged seizures. During the seizure, she aspirated even though we did not see her choking and her vital signs remained normal throughout. We saw urology and they are doing some tests. While waiting for the tests, Zoe is on a daily antibiotic to prevent urinary tract infections. The urologist wants to make sure there is not something going on that is causing the infections. So we will have a busy month of August with more tests and appointments.

Life Moving Forward

Gavin and I are still feeling a bit overwhelmed and shocked from this latest experience. Zoe has never been so acutely sick and it scares us how quickly this happened. We would feel reassured if her doctors could promise us this won't happen again. However, they all seem to think it will happen again and all we can do is plan how to cope with a long seizure to decrease her chance of aspiration. We have changed some of her seizure meds and our emergency plan. She also still has the central line (PICC line) in her arm for emergencies. The PICC can not be left in long term so we are looking at removing that in the next few months. We are hoping Zoe will not need a central line of any sort since the next option involves surgery to put the line in. Zoe's complex care doctor knows her well and feels comfortable watching and waiting to see if Zoe does need this or if (hopefully) she does fine without it.

Life Moving Forward While Holding Our Breath

Gavin and I feel overwhelmed with the amount of monitoring Zoe is currently needing. We check her temperature regularly since she is still spiking temps, she is on so many meds and fighting us every day on taking them, we continue to monitor her respiratory and cardiac symptoms like we usually do, and the seizures continue every day. So far we only see quick, absence seizures but we have seen a longer focal seizure. It is difficult not to worry when we put her to bed with a slight fever and we have seen several seizures that evening. Ailsa has me up regularly in the night so I check on Zoe when I get up with her.

We have some fun trips planned for August. We are going to go ahead with our plans and just pack some emergency supplies. I am really hoping Zoe continues to do well and we have a great August. She does have periods of time where she acts like her old self- running around the house, bossing us all around, and laughing at something she is not supposed to be doing. So I know in time she will recover from this. I just hope it does not ever happen again.

Zoe is Home

Grandad's welcome home sign for Zoe

Just wanted to let everyone know that Zoe is home now. We were discharged on Friday with NG feeding tube and PICC line. Zoe was drinking well enough to trial taking out the NG on Sunday and has been doing ok since then feeding wise. So hopefully we won't have to put that back in. As for the PICC line, as her pediatrician said today at our appointment "No doctor who knows Zoe is going to want to be the one who signs the order to take that line out." So for now, until she is fully recovered, we will keep the central line for emergencies.

Zoe is still running fevers and not feeling great but we see improvement every day.

For now we are all feeling very physically and emotionally exhausted from all of this. Zoe tells me she is scared and sad and it just breaks my heart.

But we are all strong and we will get through this. Gavin and I will feel better once Zoe has recovered and hope that she is never this sick again.

For now I feel like I am holding my breath...

Zoe doing better

Hey all. Zoe is doing much better today. She was weaned off BiPAP last night and went on to CPAP (http://en.wikipedia.org/wiki/Positive_airway_pressure ) and is now just on blow by oxygen (moisturized oxygen blown close to her face). She got a PICC line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter )
yesterday at 1:00- they started talking about it at noon so things went amazingly quickly, which was both stressful and comforting. So now she can get her bloodwork through that and we don't have to worry about IV's going bad. She is sleeping comfortably and has not got any sedation for some time now. She still has a nasal trumpet (http://en.wikipedia.org/wiki/Nasopharyngeal_airway )in to help keep her nose open and to facilitate suctioning out any gunk she can't clear from her airway. She looks much better and much more peaceful. We'll try and get a photo up soon. So far there has been no evidence of increased seizures (knock on wood). Genevieve, Ailsa and I are staying at the Delta Chelsea down the street so we all had a much better sleep last night (I got more sleep last night then I had had in the previous three nights combined, which was nice). Our friends Melissa, Riann and Dane have been very helpful, as has Zoe's excellent respite worker Alison. My dad Alan was also a big help on the first day Zoe was admitted as a baby watcher. My colleagues in the ED have been very supportive in me flexing my work hours, providing medical information and just being generally supportive. Thanks to all.

Anyway, just a quick update. I couldn't figure out how to get the links highlighted for you, so if you are interested you can just cut and paste for the time being- maybe Genevieve can fix it for me later : )

Zoe in ICU

Zoe Has a Cold

On Tuesday, we noticed that Zoe was coming down with a cold. Just a simple, stupid cold started all this. She had a runny nose and slight fever. She had a pretty good night- just woke up once with a fever and needed to be cleared out from all the mucus. She had a good day Wednesday and we expected her to possibly go to school on Thursday.

Emergency Room Visit

At 4am on Thursday, Gavin and I both woke up because we heard Zoe breathing kind of funny. We figured she was clogged from mucus or had turned herself face down. Gavin went to check on her. I heard him calling her name repeatedly which meant she was having a seizure. Zoe was having a tonic clonic seizure (http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure )which means her whole body was shaking and she was not conscious. Because we were not sure how long she had been seizing, we gave her the emergency seizure medication and started getting dressed to take her to the hospital. Zoe continued seizing all the way there and was still seizing when I dropped Zoe and Gavin at the emergency entrance. The seizure lasted a total of 30 minutes that we know for sure plus however long she was seizing before we found her.

Zoe was actually doing better after the seizure and we planned to take her home. However, while waiting for medication and discharge papers, Zoe began seizing again. This seizure lasted 45 minutes despite five doses of emergency seizure medications. The doctor said Zoe had started to go into status epilepticus which is serious (http://en.wikipedia.org/wiki/Status_epilepticus ).

After Zoe finally stopped seizing, she was doing ok but they wanted to keep a close eye on her and planned to admit her to the regular floor. While waiting for the transport person, Zoe began signing that her chest hurt and was working really hard to breathe. They took an xray and while waiting for results, started oxygen and Ventolin treatments.

The doctor called us over to show us the xray results (never a good sign) and showed us that at 5am Thursday morning, Zoe's lungs looked like they always look- just a little white shadow in the left lower lobe. By 7pm, her lungs were covered in white shadows which meant there was mucus/fluid in both of her lungs. They were concerned that her lungs changed so quickly and thought it might be that she aspirated mucus during her 45 minute seizure. The medications they gave her made it harder for her to protect her airway so she may have sucked in mucus as a result.

Intensive Care Unit

As it stands, Zoe needed to be put on a breathing machine since she was having such a hard time breathing and her oxygen levels were dropping. She is on a less invasive breathing machine called bi-pap and they are watching her closely to see if they will need to be more invasive and fully intubate her. My understanding is that with bi-pap, Zoe is still initiating breathing on her own and the machine is blowing air to make her lungs expand more as she breathes. With full intubation, the machine will be breathing for Zoe.

Current Issues

Right now Zoe has three big issues they are figuring out:

1- Keeping a close eye to see if her lungs are improving. If not, they will intubate her and start washing her lungs out with saline to clear the mucus out. They are giving her some time to see if she can clear her lungs herself. So far we have seen slight improvement on her xray and they have been able to decrease the pressure and oxygen levels on the breathing machine.

2- Zoe stopped peeing on her own and they aren't sure why. So they are giving her medications to make her pee. They don't want extra fluid sitting in her body since it is not good for her lungs. And obviously, not peeing is not a good thing.

3- Zoe is very difficult to get an IV into. They have already gone through several IVs and are constantly poking her for bloodwork. So they are talking about inserting a central line (http://www.medterms.com/script/main/art.asp?articlekey=14394 ) but they are some risks with that so they are waiting for some culture results to estimate how long she will need IV antibiotics for. If it is going to be several weeks, then they will have to insert a central line.

Zoe is Miserable

Right now, Zoe is pretty miserable. The machine is obviously uncomfortable, she is being poked every few hours and suctioned every couple of minutes. They are deep suctioning her through her mouth and Zoe hates anything in her mouth. Today they are giving her a medication to help her sleep which is a good thing. She needs to rest so her body can stay strong but she feels so miserable she just lies awake irritated.

We are going to get a hotel room a block from the hospital so that I can spend more time with Zoe. Right now it is difficult because Ailsa is not allowed in the ICU. They are worried about her being exposed to something and getting sick too. So we plan to have people at the hotel with Ailsa so I can run over to see Zoe and then run back to nurse Ailsa and get rest when I need to. Ailsa has been doing a great job with all of this but we could see how irritated she was after spending two days with various strangers holding her and not on any sort of routine. So we plan to have her spend time with a regular group of people we trust and have more of a routine during the day so she can sleep well at night. Which means we can get a little more sleep too.

We will try to post updates when we get a chance but just wanted to let people know how Zoe was doing.

We appreciate everyone keeping us in your thoughts.