Heading home

Things are looking up. We are heading home in a couple of hours. Zoe was off oxygen all yesterday. She was on a little overnight for a sleep study- unfortunately she didn't cooperate and stayed awake until 3:00 in the morning(the study ran till 6AM). She has been a tired little girl today : )

We decided to leave the NG tube in for a little while longer, just to make it a little easier on her (and us) to stay hydrated and get her meds in. We will still have to revisit the issue of home oxygen at night for Zoe's sleep apnea (great, another new dignosis!) and look at putting a Port in for IV and bloodwork access in the future. We also need to plan Zoe's eye surgery (they are planning on closing Zoe's tear ducts to treat her dry eyes caused by her lack of tear production) but for today we are going home. It will be nice to just relax in our own space as a family. We've been here for 13 days- Genevieve and Ailsa have been going home most nights while I stay here with Zoe. I did get to spend one night at a nearby hotel- very fancy! Between work (both Genevieve and I work at the hospital Zoe is treated) I have been here for the majority of 16 days. Begins to feel like you live here. It will defianetly be nice to be home. I have missed having my girls together. Thanks to everyone to helped out while we were here with giving us breaks, lending an extra set of hands, buying us tea etc.

Zoe is always on isolation when she is in and not able to use her walker, which is very hard on her. We try to bring in her walker round about the time she is getting released so she can triumphantly walk out of here on her own terms. I am looking forward to seeing that today.

A step forward, a step back

Not a Good Day

Zoe had a rough night last night and required several breathing treatments as well as more oxygen. Gavin said she took a long time to fall asleep because she was wired from the steriods in the breathing treatments. This morning Zoe was not feeling well and continued to need more oxygen.

Yesterday was a great day- Zoe was feeling pretty well, had lots of energy and enjoyed all of the special birthday attention. Perhaps she just wore herself out and needs a bit more rest. The doctors keep saying this may "take a while" to clear up.

So, we will just keep waiting....

Happy Birthday Zoe!!!!!

Alison (Zoe's respite worker) found yet another singing animal that Zoe loves to play over and over and over again!

Ailsa showing off the picture Zoe made her.

Play is serious business for both girls! It is great to see them playing side by side again.

Medically the Same

Medically things are pretty much the same. Zoe still requires a lot of oxygen. A lot of the puffiness in Zoe's skin has gone down but she still has too much fluid in her chest. She continues to have fevers and she is complaining of chest pain consistently now. Her communication cards come in handy for assessing her pain level.

However, mood wise Zoe is doing leaps better. She is smiling, laughing, playing, eating and signing. She tires easily but this is no surprise. The staff are amazed at what a great mood she is in considering how she is doing medically. Several people have commented what a fighter Zoe is and what a pleasant personality she has.

I am headed to the hospital shortly to celebrate a very important day with my girl- Zoe's 5th Birthday!!!!!!! I have dresses picked out for the girls to wear, the hospital is getting her a cake and some gifts, and I asked a very dear friend to be in charge of decorations because I just don't have the energy.

So I think it is going to be another great day with my beautiful girl.

Holding Our Breath

Another Good Night

Just got off the phone with Gavin- Zoe had a pretty good night. She had an episode of some breathing difficultly around 5am and they gave her a steroid breathing treatment and that seemed to help. She is currently getting breathing treatments every four hours and she continues to need a lot of oxygen. But Gavin said they both got some sleep last night.

Ailsa and I came home last night to get some rest. Ailsa was having a tough time sleeping away from home and spending the entire day at the hospital. I am hoping that Zoe remains stable and Ailsa and I will spend the day at home. I get the fun job of doing the laundry and paying some bills! It is difficult to do any of that when all I want to do is sit by Zoe's side holding her and singing to her. We also started to read Harry Potter but I am skipping any of the scary parts.

The Plan

For now we are keeping a close eye on Zoe's oxygen needs and any sign of a new infection. She spiked a fever last night but it seems to be ok this morning. We will have to spend yet another holiday at Sick Kids. (For you Americans reading this- Monday is a holiday called Family Day in Canada....I am not sure but I think it is just an excuse to have a day off in February. We have a few holidays like that here and I like it!) And poor Zoe will have to spend another birthday in hospital. They ordered a birthday cake for Zoe for Tuesday and asked what type of gift she would like. As long as Zoe continues to be stable, Gavin will work again on Sunday and Monday. It is very difficult to for him to work right now but it is what needs to be done for our family. He missed a shift on Wednesday but was able to work most of Thursday and all of Friday. Anyone in the Toronto area who wants to stop by and lend a hand with the girls is more than welcome!!!! Sheena is leaving for a 6 week Australia trip tomorrow so we will be short that extra pair of hands.

Zoe's chest is sounding "different"- a lot more crackles and noise. Which could be good, it means the mucus is moving around now. When I listened to her chest earlier in the week it was eerily silent in the lower lobes because she was not moving any air there. So hopefully crackles is moving in the right direction. They ordered chest physio with suction twice a day. They don't want to move the mucus too quickly so we are not supposed to do our own physio. We just get Zoe up into a chair a couple times a day and she sits up in bed so she is not lying down all the time. Any time we put the bed flat to change her diaper, Zoe's oxygen levels quickly go down despite the all the oxygen she is on.

We don't know yet if there is any damage to her heart. The team is not focused on that right now. It is more important to address Zoe's breathing issues and the fluid in her chest.

So that is where we are at.

today/tonight

not a great day today. After last night it didn't get a whole lot better. Zoe lost her IV last night and we spent a good part of the day today trying to get a new one while coordinate her care. She went to get a different type placed using ultrasound but after 2 tries we were unsuccessful. They put a small one in a vein in her forehead just in case she needs it but it might not be much use as they have to be really careful what they put in it as it is so close to her eyes and face and if it blows it could be bad. We were able to be with her for the whole thing though, which was good- Genevieve comforting and distracting Zoe and Gavin holding her arm in a variety of positions while the nurse tried to get it in. Zoe's veins are all just too small, blown or blocked by the amount of fluid in her tissues. Plus she went about 14 hours with no fluid so she was dehydrated again. Right now I am just sitting here, typing this and occasionally getting up to repostion Zoe's oxygen mask (she needs both a mask and nasal cannula's to keep her oxygen level up) and trying to prevent her pulling out her somewhat minimally taped IV.

She was poked around 14 times told today- no sites for IV's of bloodwork left. If she gets sick again toinight we will have to move onto other even more invasive options. Genevieve and I have been kicking around the idea of getting a PORT put in Zoe- an implanted IV reservoir that gets access by a needle when required. Some risks but now we are definately going to move ahead with it when she is healthy enough to get it. We can't keep doing this to her- it's just not safe.

Just gave Zoe a breathing treatment- 9 PM. Desat-ing somewhat.

Zoe has a viral infection on top of her bacterial urinary tract infection- human metapneumo virus (hmpv). Two for the price of one, I guess.

Today was a frustrating day- it seemed like her health care team was very disorganized and what one team thought didn't match up with what the other team was thinking. It came together later on and we ame up with a rough plan for if she has a good night and continues to improve or if she has a bad night like the last two and she startslooo to get worse. As it stands they are hopeful that she will stay stable and get better with the various treatments, time and her own healing. Time will tell, I guess.

Genevieve went over to hotel with Ailsa and my mom and I'm staying here tonight- I really did not want to be away tonight and Genevieve really needs her sleep (and Ailsa too!)

Anyway, not all bad- there could be some improvement if she doesn't get worse overnight. We'll see what tomorrow brings.


thanks for all the support and good wishes. we'll hope tomorrow is an easier day.

love and stuff
GGZA

Another Rough Night

Zoe was feeling better last night and we were feeling hopeful she was past the worst of this one. Sheena (Gavin's mom) got a hotel room near by the hospital so Gavin and I could get some sleep and be close by while she stayed with Zoe. This was wonderful for the first two hours where we slept soundly. The nurse called around 2am to let me know some things were happening with Zoe. I left Gavin and Ailsa sleeping and walked over to the hospital.

Zoe's oxygen levels have been dipping dramatically for the past couple of hours. They have upped her oxygen and given her breathing treatments. The critical care team has come back around (they just discharged her last night). They are concerned that her chest xray shows even more fluid in her lungs and now her heart is more enlarged. They are going to get an echo to see how her heart is doing this morning. They do not believe the fluid in her lungs is a pneumonia. Instead, it is extra fluid seeping into her chest cavity and other organs.

So that is where we are at. This hospitalization we have been lucky to have both of Gavin's parents here with us. Both of them moved to Ontario recently. Alan is a five minute drive from our house and Sheena is about two hours away. It has been so helpful to have an extra set of hands to help with both of the girls.

The Plan

They are going to check out how Zoe's heart is doing. They are giving her diuretics to get rid of the extra fluid and hopefully that will relieve some of the pressure on her lungs at the same time. Zoe lost both of her IVs so we will be consulting with people about using ultrasound to guide the next IV and hopefully that will work.

Thank you everyone for your comments and for keeping us in your thoughts!

Rough Couple of Days

Zoe has been slowly getting worse rather than better. Her chest xray yesterday shows fluid in her lungs. She is on oxygen and they had to slowly increase it throughout the night. Her blood results are showing that she is having some issues with electrolyte balance despite the fact that she has been on IV fluids the last three days. She stopped peeing yesterday and had to be catheterized but she did start up again this morning on her own. She has lots of diarrhea from the strong antibiotics she is getting.

So all in all, not a good couple of days.

Gavin, Ailsa and I all slept here at the hospital last night because Zoe was not doing very well and they were thinking of transferring her to the critical care unit. Right now the critical care team is in charge of her and making all the decisions but they are hoping she does not have to move to the unit. We hope so too. The CCU is a difficult place to be- Ailsa is not allowed to visit, there is no bed for one of us to stay with Zoe, and it would mean that Zoe is sick enough to be there. So we are hoping to avoid that.

I will try to keep this updated when I get a chance.

Zoe in Hospital

Another Emergency Room Visit

So far 2012 is not turning out to be as hospital-free as we hoped it would be. Ailsa had a cold all last week. We tried to keep her away from Zoe but that is difficult and as anyone with children know, it is kind of inevitable that once one child is sick, the other is sure to follow. Zoe started with fever and cough on Thursday. By Saturday she was not drinking very much and I was concerned with her colour- her nailbeds were turning blue and it was hard to tell if it was from dehydration or low oxygen. Zoe's reflux was really bad and she was choking every time she coughed. But we wanted to give Zoe some more time so we did not take her in then. It is a difficult balance with Zoe. We don't want to rush to the hospital every time she is sick but we also want to do everything we can to help her feel better faster.

Sunday morning Zoe seemed a little better but by Sunday night it was obvious that Zoe needed to go to the hospital. As we were getting ready to leave the house, Zoe had a huge vomit and wet poop which made us say, "Yes, we definitely need to go in now because she is already dehydrated."

Seizure in the Car

It was difficult to tell if Zoe was in and out of a seizure or just out of it while we were getting ready to go. Gavin loaded Zoe into the car and right away she started having a full on seizure. Gavin rode in the backseat with her and gave her the emergency medication to stop the seizure. The seizure lasted 15 minutes but did stop before we got to the hospital. At the hospital, Zoe continued to have small seizures so they decided to give her a "loading dose" of a strong seizure medication. We were nervous last night when they gave her this because the last time they loaded Zoe with this medication she ended up with aspiration pneumonia on a breathing machine in the ICU. But everyone was aware of what happened before and they watched Zoe closely. They also limited what medications and liquids went into her mouth and gave her a medication to stop her reflux/vomit.

So Far, So Good

It has been 12 hours since Zoe got the loading dose and she has not seized. Her lungs also look good on xray. I called the nurse this morning and she said that Zoe had a rough night but is sleeping soundly now. Gavin is sleeping, Zoe is sleeping, Ailsa is sleeping...I should be sleeping. But I find it very difficult to sleep when Zoe is away from me.

A Conversation Between Sisters

On Saturday I witnessed a sweet conversation between my beautiful girls. We were all in our bed and Zoe was upset and signing, "Ailsa." I said, "Ailsa is right here Zoe, do you want to tell her something?"

Zoe: "hurt"

Me: "Ailsa, Zoe wants you to know that she is hurting right now."

Ailsa: points at her teeth

Me: "Zoe I think Ailsa is asking if your teeth hurt. She is getting two new teeth so she probably thinks your teeth hurt too."

Zoe: shakes her head "no" and again signs "hurts"

Me: "No Ailsa, it is not her teeth that hurt. I think Zoe is hurting all over from her fever."

Zoe: reaches out to grab Ailsa's hand

Ailsa: reaches out and gently pats Zoe's hand with one hand and her forehead with her other hand

Me: "Does that make you feel better Zoe? Do you want your sister to hold your hand?"

Zoe: continues to hold Ailsa's hand while signing "Ailsa"