To summarize our life in the last few months would be difficult. But here is a quick summary:
April and May- Gavin was back in hospital with a second case of bacterial meningitis.
May- current Ailsa has been running low grade fevers and has gone through multiple tests to find the cause. At one point she had high blood pressure and protein in her urine so she spent a few days in hospital. Nephrology thinks she may have nephrotic syndrome (which should resolve on its own) or chronic nephrotic syndrome which is more serious. We are giving her some time and if her symptoms do not get better, she will need to undergo a kidney biopsy as well as a bone marrow aspiration in two weeks.
Currently- Zoe is in the hospital and we are still figuring out what is wrong. She was perfectly fine on Monday- went to camp and then swimming as a family. When we put her to bed, Zoe did not settle and was crying loudly which is not like her. Usually she falls asleep well and is restless later in the night. I went in to check on her, asked her what is wrong. She told me she had to throw up and was scared to throw up in bed because she will choke (which she has done in the past). I picked her up and sat with her and reassured her that she probably just felt full from eating too much supper. Or perhaps she swallowed too much pool water (both girls were gobbling down the salt water like they couldn't get enough of it!) We sat for less than one minute when Zoe began violently throwing up. Everything that was in her stomach came up. I kept her upright and made sure her airway was clear. I reassured her that she was safe and I was glad she told me she was going to vomit. After throwing up 4 or 5 times, Zoe became pale and unresponsive. We decided to take her to the hospital before she started seizing. She started seizing a few minutes after we left. Gavin gave her Ativan while I drove. That seizure only lasted 6 minutes. She then fell asleep.
When we got to the hospital, I dropped Gavin and Zoe at the emerg entrance and went to park the car with Ailsa. By the time I parked and came in, Zoe was in the resuscitation room seizing again. That seizure lasted 70 minutes despite being given multiple medications to stop it. When she finally stopped seizing, she continued have small seizures on and off for another 45 minutes.
Communicating with Zoe
I am always amazed at how much Zoe is able to communicate. People look at her and assume that because she is "delayed" and non-verbal that she is not really saying what we say she is saying. But we know her so well we can read subtle signs. I am so glad she was able to tell me she was getting sick. She did not aspirate while puking and since we kept her on her side and suctioned her from time to time during the long seizure, she did not suffer any lung damage.
Ailsa was amazing with Zoe. I did not want to leave Zoe and Ailsa did not want to leave me. Since Ailsa has seen Zoe seize before, we let her stay with us. It would have been more traumatic for her to be separated from us. The child life specialist kept Ailsa busy in the corner colouring and blowing bubbles. She made sure she had a good view of us but not a clear view of Zoe. When sitting in the stroller, Ailsa would occasionally call out- "Are you ok Doe Doe?" Or "wake up Doe Doe." She then would say, "No, Doe Doe not awake." Once Zoe was more stable, Ailsa said she wanted to talk to Zoe. When we brought her to Zoe's side she kept rubbing her hand and saying, "It's ok Doe Doe. Doe Doe not all done." At the time I did not stop to think if it was the best thing for Ailsa to stay with us. But we have to make these quick decisions as parents and we can only do our best at the time. If something did happen to Zoe, at least I could reassure Ailsa that she had a chance to talk to her. I know that won't bring any of us much peace but what else is there to do when this is our life?
Back to Zoe
They found that Zoe had some bacteria in her urine but not a lot. They started her on antibiotics and sent her for an ultrasound since she was complaining of pain near her appendix. The ultrasound showed a "structure" in that area but they were not sure what it was. They decided to watch and see how Zoe did. The pain got worse- Zoe now needs morphine to be comfortable. They sent her for another ultrasound yesterday and saw that she has a lot of stool backed up in that area. So is she having pain from constipation or is whatever is growing in her belly blocking off her bowel? They are sending her for a CT scan today.
Good news is that Zoe is stable. Her lungs are nice and clear. She does not seem to have suffered damage from the long seizure although it is difficult to assess her right now since she is in so much pain and sleepy. It is a huge relief that she is not critically ill and her breathing is fine. Now we will just wait to see what needs to be done.
Ailsa visited Zoe at the hospital yesterday and was very relieved to see Zoe was ok. Gavin said she kept saying, "Doe Doe, I'm coming to see you." in the car over and over on the way there. When she got to the hospital she ran to Zoe's room. After seeing that Zoe was ok, she then wanted to go to the playroom. Later, I spent some one-on-one time with Ailsa since I had not seen her much in the last couple of days. Gavin gets very shaky and fatigued easily so he has been needing to rest more. Thankfully Ailsa is in full time daycare now so she is taken care of during the day. She started full time in April when Gavin was in hospital and I realized I just couldn't do it all anymore.
If My Life Were A Song
Frequently I have heard songs on the radio and I think, "I should make a mixed tape to listen to when someone is in the hospital and I am driving back and forth and back and forth." I have not actually found the time to do this yet, but I have made note of certain songs.
I listed to this song a lot when Gavin was in the ICU and still didn't know who I was. Both times I found comfort in listening to these lyrics:
"All along it was a fever
A cold sweat hot-headed believer
I threw my hands in the air, said, "Show me something,"
He said, "If you dare come a little closer.""
I often felt like throwing my hands in the air and yelling at Gavin to wake up and remember. Show me something- show me you are still there.
"Round and around and around and around we go
Oh now, tell me now, tell me now, tell me now you know.
Not really sure how to feel about it.
Something in the way you move
Makes me feel like I can't live without you.
It takes me all the way.
I want you to stay"
Not really sure how to feel about it is an emotion that I feel quite often now. When ever Gavin or Zoe are not fully there and I am wondering where have they gone? Will they come back? Will they suffer more brain damage? I think of these lyrics. I feel so sad I don't even know how to express it. I feel so anxious I feel like I can not breathe.
My brother lost his daughter 16 years ago. I still remember the way his wife and I would drive to the hospital to see his daughter. She would be chatting with me in the car. I would watch her other child while she visited with her baby. And every day when we exited the hospital doors, she would take a big breath in, let it out in a soft sigh and her shoulders would hunch down like she was carrying the weight of the world on her shoulders. She usually did not talk on the drive home. This is the best way to describe what I feel.
"It's not much of a life you're living
It's not just something you take – it's given"
I think about this lyric a lot. What kind of life is it that we are living. I often feel like our life is on hold, just waiting to actually start. We seem to go from one crisis to the next. And although we try to enjoy the moments we do have it is very different from our previous life. Gavin and I have always tried to be aware of the moment and live in the moment. This became harder once we had children (everyone knows what it is like to see your children grow so quickly and wonder where the time went). But more than that, I feel like our life is constantly in crisis. So now I try to just live this life. Because maybe at times it doesn't seem like much of a life that we're living. But it is the only life we have. So we might as well appreciate it and try to get what we can in the moments we have.
"Ooh, ooh, ooh, the reason I hold on
Ooh, ooh, ooh, 'cause I need this hole gone
Funny you're the broken one but I'm the only one who needed saving
'Cause when you never see the light it's hard to know which one of us is caving."
The hole gone reminds me about what I said before- having this feeling in my chest like I can't breathe. Like my heart is breaking again and again.
And sometimes it does seem like we never see the light. But we try to bring the light into our lives as much as possible. Perhaps it is a very strange memory of the two times Ailsa has been with us when Zoe was crashing. The first time Ailsa was only 5 weeks old, I put her down on a padded chair, tucked blankets around her so she would not roll off, and concentrated on Zoe. I didn't even remember she was there until a staff member said, "Oh my goodness- there is a baby on that chair!" Someone offered to take Ailsa out of the room and I did not see her again for a couple of hours until Zoe was stable and she was screaming for her milk. I am sure the memory of how well Ailsa did and how loving she was during this recent event will stick with me the same way. So perhaps this memory would be odd to other people but to us, this is our life. And it is amazing to watch how wonderful our girls are together. Gavin's doctor in the ICU once said to me that he would not remember the days when he was out of it and fighting us but that did not mean that he did not benefit from hearing familiar voices to help his brain recover. I never wanted Ailsa to have to be a part of any of this. But perhaps she needs to be there for Zoe as much as we do. And who knows what Zoe feels at the time but we always want her to know we are there, fighting for her until she tells us she can't do it any more.
There are many other songs but this is already getting a bit lengthy and probably a bit emotional for my British rellies :) Sometimes I need a good angry song to yell along to on that drive. And sometimes slow songs like this help too. All depends on my mood.
Perhaps one day I will manage to make that CD.
Ella is One!
2 months ago