Today was a good day. The neutrophils were up so the antibiotics were ceased. This meant that we could be disconnected from the pole and turn in circles without having legs bound like a roast chicken.
We had a surprise visit from Daddy and the elder siblings who immediately assumed that we were all going downstairs. Thought it couldn't hurt to ask so our middlest marched off to find the doctors and see. The doctors said yes!!! (Of course with the conditions that we steer clear of people at every turn and go right outside into the open air.)
So we spent a portion of the afternoon, the whole family out sitting on the lawn in the sunshine. The first moment in about a month when the five of us just hung out together without any intrusions or regulations. So lovely.
Mon 17th Feb
So if yesterday was a surprise, being allowed downstairs, imagine my surprise when our nurse co-ordinator (the guy running the whole thing) saw me in the kitchen today and asked me what I thought about going home today!!
So it turned out that Jacinta's numbers had been trending up mostly and then this morning they were all up-trending so I figure that was enough for the doctors to send us packing.
Of course I didn't believe them at first, since so often in a hospital scenario you think something's going to happen and then it just doesn't. But they kept acting so much like we were going: the pharmacist turned up with our meds, then one of the nurses took us for a tour of the place we'd need to be on Thurs. The afternoon nurse came on and said she'd not be looking after us really, but if we needed anything to call. That was the point at which I really believed them.
Once more I was required to be on my toes a little. The pharmacist brought all the meds out, including the diuretics. Now as you may recall, the diuretics were started after the chemotherapy, because the extra fluid was overloading her system and she went into heart failure. (Which is not cardiac arrest, just a less-awesome level of heart function.) After the chemo finished it only took a day or so for her blood pressure (BP) to drop and her weight to drop and she was taken off them straight away.
This time they reduced the dose right down and they were sending her home on them. I queried this with the nurse yesterday because I didn't know exactly why she was still on them, except that her BP was ok and her weight was steady. The nurse said "it's back to once a day now", which didn't really answer my question since I don't have baby scales or a BP cuff at home. (Although I do have 'baby weight' on my WiiFit board, which is quite cool - though perhaps not completely accurate. Though I don't know actually, it might be.) I was a little concerned about taking her home like that since the only MET (emergency) call she's ever had was for a very low BP - at 2am which I would have slept right through had not several doctors been making a lot of noise in the room.
When the doctor came round I asked her how I was to monitor her, and gave her the scenario, including that day's weight, which was slightly down. She asked, "is she not normally on heart medication?". "No", I replied. "Oh, we'll just cease them then", she responded, "I just assumed she was normally on them". So there you have it. Realistically, her medical history is several inches thick. I don't expect the doctor to know it all by heart. That's my job.
So, by dinner time we were ready and by bedtime we were home!!!
So, let's see how long this lasts…..
Tues 18th Feb
Now, just to clarify, this is certainly not home for good. This is a couple of days off, which we're quite lucky to get since mostly on this protocol they don't let you home until after round two.
We've been home 24 hours and no problems yet! (Except my older two having extreme difficulty going to sleep…) The Royal District Nursing Service rang today to organise blood tests for Thursday ahead of her bone marrow aspirate on Friday - except late yesterday the bone marrow aspirate was changed to Thursday and the bloods were cancelled. Except they weren't cancelled with the RDNS!
So I explained this to the RDNS and the person on the phone stopped just short of saying "yeah, right, pull the other one". She did explain that they had the order from the Children's and they had to proceed according to that. I reasoned that I should ring the Children's and she said I could do that but that they'd see me Thurs unless they heard otherwise.
So I rang the Children's and a very helpful person who I'd never met before said she could sort it out for me. The RDNS rang back again an hour again and said they'd received a cancellation, as I'd said they would and they wouldn't be coming.
So I'm coming up with a theory. The closer a practitioner is to the top of the chain in terms of decision making with a person's treatment, the more likely they are to listen to me and take my word for it.
The further they are from the top of the chain in terms of decision making, the less likely they are to believe what I say.
So from this theory we can formulate a policy in terms of methods of operation. If I am speaking to a person who just isn't grasping or acting on what I'm saying, go higher. This doesn't mean escalating in the corporate sense, more choosing the moment. The hospital system is designed so that you do see the right person at least once a day and they're hanging around if you really need them. At key points they do also come and find you. They even spot you in the parent's lounge and come in for a chat if need be.
It's much easier not to get frustrated by nurses or clerical staff who don't seem to grasp the concept, despite having English as their first language. Simpler by far to leave it until you can find the guy who can fix it. That is, unless it's about something which is imminent, in which case throw yourself over your child and don't let anyone touch them until you've spoken to the guy in charge. Those are my thoughts on the matter. Take them or leave them!
So today, three weeks into the school term, we made it to school! We also snuck in kinder pickup and drop off - being very sure to stay outside as long as possible and minimise the time spent in the building, and definitely avoiding anyone else's space. The quizzical looks I got as I held the door for every other parent collecting their child and volunteered to go last. "Are you sure?", was the general vibe. No-one ever wants to be last.
And as I type it's 10:45pm and my middlest, who had a sleep at kinder and again on the way home, has just fallen asleep in front of me. Oh the meltdowns tomorrow. Still, I prefer meltdowns to nothing at all!
Wed 19th Feb
Well thank goodness I'm keeping this blog. I'd have no idea what the date was if I wasn't!
So today we're still healthy-looking, if a bit tired and possibly slightly pale. The haemoglobin was meant to be going up on its own, but I'm wondering if it really is. The hospital Day Oncology person rang today to confirm the procedure tomorrow (BMA and LP) and mentioned that at last count the haemoglobin was 81 (which was up) and they might transfuse. I guess we'll see. We did know that number when she was discharged so if the numbers have gone up they may not. 80 is the borderline between low and dire so she's not expected to be super-ruddy at 81.
I've managed to give her the medication she needs and keep her Hickman out of the nightly bath. My memory's not completely shot it seems, which is something.
So I'm off to bed in a minute to grab a couple of hours' sleep before getting her up for a last feed about 4am then maybe another hour or so and up with my middlest and out the door by 7. I so can't be bothered doing the early start and pre-peak traffic, but I guess we'll have to. (sigh)
There's a 50/50 chance we'll be staying in overnight after this procedure. The last one had her on oxygen for over 24 hours. I've got fingers X this shorter one doesn't though. My husband's birthday is this weekend and I'd really like to be home for it!
I guess we'll see what happens. Nite!
Thurs 20th Feb
So, after the excruciating process of fasting from ridiculous o'clock and not getting back to sleep, we arrived at 8 on the dot to the surgery reception. We pretty much went straight through to a waiting area near recovery, rather than the usual area. On the way in I was wracking my brains trying to work out how to manage my 3yo somehow so I could take Jacinta all the way through to theatre and keep her company while they put her under. No bright ideas popped up so I resigned myself to having to wave her goodbye while they wheeled her off. Not my preferred option.
While I was waiting in the waiting area, the music therapist appeared and put a mat on the floor. I wondered if she doubled as something else in her spare time. Then she put a sheet on the mat and brought out her guitar and box of percussion items shaped as animals. It was music time in surgery! Such a great idea it is too, with all these patients oncology patients it seemed, they were on a long line of procedures to be done and there were three waiting at that time. Oncology patients getting routine tests, like bone marrow aspirates, don't necessarily feel ill so are definitely looking for distractions so they don't tear up the room with boredom.
My 3yo happily plopped down on the mat and joined in, since we were old mates. We sat down too and spent 10 minutes or so singing away before they came for Jacinta and asked me to take her through. Argh! I had no plan! I decided to risk it. "I'm just taking Jacinta through sweetie", I said to my other daughter, and off I went. Normally she follows me so I willed her to stay in the one spot and not go wandering through the operating suites in search of me.
I took Jacinta through and again she didn't want to, which I can completely understand (the idea of being anaesthetised and people doing things to me without my knowledge completely freaks me out), but she did let them put her to sleep within seconds and I kissed her goodbye and went out again, back to the waiting area. There was little miss 3, sitting on the mat with the music therapist, playing barbies. (Of course…) Apparently once the kids get sick of singing songs, they just play barbies. Fair enough.
So we popped downstairs for a few mins and came back with a couple of minutes to spare. It was pretty quick. The lovely Oncology Fellow who had been our doctor until a week or so ago has now started in Haemotology (since they all work closely in leukaemia, and most children's cancer is leukaemia). She came out just before Jacinta and gave the thumbs up and said she went really well. It was so nice to see she's still looking after Jacinta's blood - just in a different way.
Jacinta wasn't happy with my absence, but forgave me very soon and was off all monitors pretty quickly. None of this 'low sats' business. Then the great 'where do we go next?' game began.
The recovery nurse assumed I was going to the ward. I told her I was hoping that we weren't. "Hmmm", she said, looking puzzled. It seemed as though people usually just go back to the ward and she didn't know where else we could possibly be going. I told her we were expected at Day Oncology and she rang them. I also said we had been supposed to go from recovery downstairs to the cardiology clinic for an echocardiogram, but that this was all a bit complicated because our Friday procedure had become a Thursday procedure and I didn't know if the echo had moved as well. She rang downstairs. Echo still booked for Friday. Too complicated! She rang Day Oncology and sent us over there, very early for our 11.30 appointment, and hoped they would sort us out.
Earlier, while we were waiting for the surgery, the nurse came out and had a chat. She said they would be doing a transfusion (haemoglobin) later in Day Oncology. I said that I thought this was going to depend on the blood results from the sample they had not yet taken. She said that since the level was so low, that they'd do it anyway. I said that the doctors had thought that since her levels were going up they were going to leave it. She started to explain what can happen if it gets too low. "One of these…", I realised. I left it. (Because as we've learned, a nurse who doesn't say, "I'll double check that", after several queries is a nurse whose mind will not be changed.)
I arrived in Day Oncology and they said they'd work it all out somehow and play it by ear and to take a seat. I started to settle in for the hour when the Consultant came around the corner and called us in.
She talked us through the scene and said that since Jacinta's haemoglobin was up again she wouldn't be doing a transfusion. She also confirmed that if the bone marrow sample came back showing very little or no visible 'blasts' (cancerous white cells) that this would indicate that we should continue the protocol we're on, which is the gentler level of treatment. I get the impression that we're expecting this result. The other result means we have to up the intensity and it's much less fun.
I asked if we really had to come back for the echo or if it could just be done while we're in. She said they needed it to sign off on the chemo so she'd ask reception if they could work out a squeeze in.
After going down and asking, and it looking unlikely, and them having a spot at 3.30 if we could hang around, I got a call straight back saying "come now!". So we got the echo done. The person doing it said there was a leaky valve. There is always a leaky valve so this shouldn't be a concern, but she wanted to run it past the cardiologist anyway. This put a slight element of uncertainty across the whole thing. What if it was more than last time? Would that mean having to change the protocol? Would it mean more heart surgery? (Noooo!) She said if there was a problem he'd call later today. (And we all know how that went last time!)
So I went back up to Day Oncology like they asked and when I got there, I heard I was being asked after. I was ushered through to the treatment area and the nurse from before the procedure reminded me about the transfusion. "But we're not doing it", I replied. Everyone looked confused. I explained that the consultant had decided not to since it was up slightly, and someone else chimed in and agreed that it was up slightly and in moments it was agreed that we wouldn't do it.
We still had to 'strong lock' the line though, so it's lucky I did go through. That would have lasted a couple more hours before it couldn't be used anymore. Strong locking is putting an anticoagulant in the actual tube to stop blood clotting in or around the tube. None of it goes into the blood stream and when the line is needed again, it's pulled straight out again. It takes all of about 30 seconds.
And with that, we were out of there!
So, once again, the lesson of today is: query, query, query.
I'm really starting to notice that many of the medical staff operate on assumptions, which is guess is necessary most of the time. I don't know why we seem to be so different all the time, but the assumptions don't seem to apply to us!
So when I see a confused look, it's probably an assumption being challenged. Persevere and the truth will out! Eventually…….
So nice to be home!
Fri 21st Feb
So we did a bunch of not much today, and not much happened.
I did forget it was Friday on several counts, not least of which was that a medication which is supposed to be given Fri-Sun got skipped - oops! Its the Bactrim. She won't die if it's skipped, I think we just give it Sat-Mon instead.
Not much else to report except that being home is still lovely.
Sat 22nd Feb
Today Miss J was sporting a runny nose - eeek! Then she brought on some dribbling, rosy cheeks and lots of chomping on her hands - phew! This must mean her system is largely back to normal because the hospital dentist said her teeth would slowed down a lot by the chemo. Yay! (Except for the teething part.)
I spoke to the ward and confirmed that I do now give the Bactrim Sat-Mon. I find it so hard to remember sometimes. I was feeding Jacinta and she was getting pretty comfortable and ready for bed this evening and I remembered we hadn't done her second dose, which meant force feeding her 5x 0.5ml servings of evil banana-flavoured syrup. Not relaxed after that one! I did remember to bath her and change her tape on her Hickman though, and even did the Curasept on her mouth (antibacterial stuff to stop ulcers and bugs entering the system orally). Ticked all the boxes!
So I also confirmed that we're checking back in to the hospital on Monday evening. Almost exactly one week to the hour. I'm so pleased we made it (touch wood the next 48 hours pass uneventfully, though I suspect her neutrophils are over the base good level anyway). While checking my home phone messages today I found one from Thursday, from a RDNS nurse who was about 20 minutes away….. (now that's a serious lack of communication there, see Tuesday!)
Tomorrow we have a day of fun at the waterslide park, where she and I will be hiding from the sun in our cabana (which is not a sausage but a little marquee) and keeping well away from the general public and the water! Super fun! (Should be good, though, really.)
Nite!
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