RSV

Posted on April 24, 2014 by iheartbabylove

As you know if you’ve been reading along a while with this blog, I am often very feisty when it comes to my daughter. I will do anything to get her the best care I can. This has sometimes meant harassing phone calls (to get her into the assessment for services through Disabilities QLD), it’s meant writing letters of complaint and lodging complaints, it’s meant sticking up for her needs in hospital with nurses who I question.

I like second opinions, I upset the physio recently by getting a second opinion with relation to getting Chloe AFOs.

As we are coming up to winter in Australia, and flu season, I of course will do anything to protect her from getting ill and landing in hospital. Although, now Chloe is quite some time past her most vulnerable stage (around surgeries and before the age of 1) she is still extremely susceptible to illnesses that would compromise her heart function and breathing.

RSV is one of these illnesses, here’s a link for you if you don’t know what it is. http://kidshealth.org/parent/infections/lung/rsv.html

To ‘regular’ kids, RSV can be a pain, make you feel very poorly, but for a child who has a heart condition it can be very scary. As they get older, and stronger they are more able to deal with these issues and illnesses.

Last month I made many phone calls to our cardiology team and the paediatrician about organising Synagis shots. These are monthly needles during the colder months that help to protect children against RSV. Obviously, like any vaccine, they aren’t 100% effective, but I think anything that can protect her is worth a go.

I ran into a problem, these shots are extremely expensive. The paediatrician said I would need to contact the cardiac team and ask them to organise it through the hospital in order to have it funded, since Chloe is high risk. The cardiac team, never called me back. Several phone calls and messages left, but I got diddly squat from them (this is another blog!!). Back to the paediatrician, and he says that Chloe is much stronger now, and not as ‘at risk’ as she was last year, and that he could organise it but it would cost upwards of $1000. Yep, you read that right, $1000, probably $1500. He said in all his years here in QLD he hasn’t had any patient or heard of anyone that had managed to get all the shots funded through the hospital. Apparently, in the last few years the government decided that it didn’t do that much to protect these kids and stopped funding it. (Not to say that a few still in hospital, think premmie and immunocompromised kiddies with long hospital stays). I do know of families who were able to get it other states.

So I shelve my frustration for a while, and trust the paediatrician that even if Chloe does get RSV she’ll be able to ride it out and not get any further complications. RSV can turn into pneumonia or bronchiolitis in young children. Most children will get RSV (think common cold symptoms) by the time they are 2, so it’s very common. It’s a fight I lost! Makes me cross.

Last weekend, Friday actually, of the Easter weekend, Chloe wakes up somewhat congested with a runny nose and a fever. We immediately monitor her symptoms, give her panadol and check her SATs. I hadn’t considered that she might have RSV, but have expected that she will get sick at some point!

By Saturday night we start to get a bit more concerned about her and call the home visit doctor. Honestly don’t know why I bother with them, they just completely freak out with Chloe and say head to hospital.

So off we go on Saturday night. We head to Gold Coast hospital because I’m told they have a Children’s emergency now. We arrive, Mike and I, and go to Triage with Chloe. I hand over the letter I have explaining Chloe’s diagnoses and then tell the symptoms of laboured breathing and congestion. I also give the referral from the home visit doctor. I explain that she may need to be isolated due to immunity and illness.

Well, Children’s emergency is closed, the waiting room is full of drunks, and isolation? I think the nurse was either going to laugh at me or smack me! So we leave, and head the private hospital. Good choice.

We are seen immediately, she’s checked over, the doctor says, ‘Why are you here?’ To which I agree and thought it unnecessary. He says she looks comfortable etc, takes some pathology (swabs in the nose) and off we go. (He also organises a reduced rate at emergency which was amazing!)

So we keep Chloe comfortable at home. She’s irritable, has fevers, coughs and congestion. The paediatrician emails me Tuesday to tell me that Chloe is RSV positive. Great! (Note sarcasm). From this point on we decide to stay home but keep in contact with the paediatrician about her general symptoms each day, monitoring her SATs (which have dropped to her lowest baseline).

I try to contact the cardiac team for advice with her SATs, but again that’s another blog. Let’s just say that I’m going to be writing soon to change cardiologists (here in QLD the Cardiac Service assigns a cardiologist to you, you don’t get to choose or seek second opinions). And it’s not because of her cardiologist, we think he’s awesome, it’s his cardiac care nurse who we have no trust or relationship with. I’m getting sidetracked!!

So, Chloe is napping, today is Thursday… so we are into day 6 of RSV, and Chloe has been pretty much the same for the last three days. We are hoping to avoid a hospital stay at this point. The don’t really treat RSV, but just give oxygen to help support her through the illness.

Poor thing is pretty miserable but doing okay. She had all but stopped eating for 3 days, but ate some brekky this morning so that is hopefully improving. Obviously, for us, it’s not ‘just’ about the cardiac condition. Any illness that she gets also plays havoc with the syndrome she has. I’ve been unable to get her take her cholesterol, which I do believe affects her behaviour. Although it’s hard to know if she’s irritable because she’s unwell, or if the lack of cholesterol is affecting her behaviour. She’s done a lot of head banging and biting her arm too. Then she stops eating, we regress and have to pick up again with that.

All in all, it’s been a pretty crappy week. Poor little Chloe didn’t enjoy any chocolate easter eggs (in fact she threw away a lindt bunny! How dare she?) and has actually wanted some cuddles (which is so unlike her)!

Diary of a TET spell

Posted on April 16, 2014 by iheartbabylove

It was around about this time last year that Chloe began to decline. It was expected, and in some ways, ‘hoped for’. The cardiac team prefer the child to start to show signs of readiness before completing the next surgery, the Glenn. Readiness meaning ‘decline’.

In fact, it was about this time last year we took a little trip to the emergency room at the Mater Children’s. Chloe had become increasingly more unsettled and we were beginning to see some of the digestive issues related to the SLOS. I remember turning up to the the ED and she pretty screamed the entire time, for hours. No one could put their finger on what was going on. We spent almost all Easter in hospital.

Then the TET spells began. I didn’t know they were TET spells, I had never heard of them. None of my research showed up TET spells in children who had HRHS. It’s more commonly associated with children who have Tetralogy of Fallot, another cyanotic heart condition. It’s basically a spell of very low oxygen, I won’t go into the details, but you’ll get an idea of what it looks like.

Chloe was becoming increasingly unsettled and unhappy, crying a lot, and showing signs of discomfort. Often, after crying she would become lethargic and have a nap. I had told many doctors about these episodes and none had related them to her heart condition. These episodes were becoming more frequent until one made me call an ambulance.

It was late in the afternoon and I was getting ready to get Chloe into the bath and do our usual bathtime/bedtime routine. But she became inconsolable. She screamed and cried, I picked her up and rocked her. This didn’t soothe her. So, as I becoming accustomed to doing, out of some kind of motherly instinct I guess, I put her to my shoulder and tucked her legs up to her tummy so she was in a kind of squat position. I thought her tummy was hurting and so this seemed to bring some relief. I’ve since learnt this is exactly what they recommend you do when your child is having a TET spell.

It did help, however, as soon as she started to quieten down, she started to go limp in my arms. And turn blue. I don’t often talk about these spells, in fact, as I write this I can feel my heart beat faster as I recall how I felt in the moment. I was alone and became terribly afraid of what to do with her.

I ran to the phone and called an ambulance. At this stage Chloe was extremely blue in my arms. And limp. And non responsive. The 000 operator was wonderful and asked me a series of questions. And I know attempted to keep me calm. The ambulance station is very close to our house so they really were here in a matter of minutes. During the phone call, as I was cradling Chloe, she started to rouse but was very lethargic.

By the time the paramedics arrived at my door she was awake and alert. The paramedic told me to get straight into the ambulance as they would take her to hospital. I remember trying to explain Chloe’s heart condition and that her SATs just needed checking because as you can see she is really alert now. In fact, she was smiling at the paramedics and looking pretty good.

I managed to tell them that her O2 SATs of mid 70s was actually pretty good for her and that I was no longer worried about her. So they checked her over and we went back inside. This was not recommended but the ambulance officers, but as I often do, I try to avoid taking Chloe to hospital. Mostly to shield her from unnecessary germs and unnecessary medical intervention. On this occasion it was probably the wrong call.

Hindsight is a wonderful thing. And even though I called the cardiac team and described the incident, they still believed that she was just ‘tired’ from crying due to digestive upsets related to her syndrome. No one had yet asked me any further questions about the ‘spell’ and I didn’t know they were TET spells.

In that moment, where she was blue, and limp, I don’t know what I was thinking to be honest. I only know that I need to call the ambulance and get her seen. It was frightening.

I cannot believe that this time last year that kind of ‘thing’ was common place for me. Living in a limbo land between heart surgeries. I had thought that post the PA band Chloe was really stable, but really, she wasn’t. I don’t really know what the risks were to be honest, it’s not something I want to spend much time thinking about, but it wasn’t til much later, post Glenn that I realised Chloe was sort of being sustained and that things could change in a heartbeat, so to speak.

Now, now she’s perfect. As perfect as she gets which is pretty perfect! There were more spells, one in fact in hospital that sent everyone into a panic, her SATs were single digits, she was completely non responsive in my arms with a nurse standing behind me with an oxygen mask. Doctors standing with morphine and a bolus of fluids at the ready. I remember the nurse trying to keep me calm while I held Chloe. It was terrifying. It was at this point that they started to see she was in fact having TET spells. Another occurred while I was having coffee with a friend at the shops. Another, while Chloe was in the car and we were in the coffee drive thru!

But now, wow. She’s truly amazing with so much energy and personality. I can’t believe that was our life. This time last year it was pretty much a haze of appointments, and waiting. Waiting for the next surgery and not knowing what the future would hold.

And even now, although we know there will be further surgeries, it is such a different story. Chloe is so stable and thriving. Against all odds she feeds orally (though she is really sustained by her bottles of pediasure), she’s growing, she is starting to talk!

She is picking up on signs and can communicate when she is ‘all done’, wants ‘more’, and the latest is ‘go’ (when she wants you do something like play with a toy or blow some bubbles or push her on the swing)! These things are HUGE to me! Though I must admit when the other night, after hours of no sleep and I put her Cloudbabies DVD on, that I was slightly regretting the ‘all done’ talking. As at about 130am I could hear her calling out, ‘all done, all done, all done!’ The DVD had finished! Cheeky girl.

And although Chloe is not ‘catching’ up to her peers, and likely will not, she is doing so much more than we could have ever have imagined. I’m so grateful for the all the little milestones!

Currently we are awaiting approval for her AFOs (orthosis that will provide some stability to her feet and hopefully build her confidence and strength with walking) and continuing to work on sensory aversions and communication, along with, as always, her feeding. In fact, after her quick checkup with the paediatrician this week she surprised us all by putting on about half a kilo in 6 weeks, more than she had put on in weight in the three months prior. The paediatrician is really happy with her progress! As are we! It’s a long way looking back to this time last year!