Those of you who have regularly read my blog so far will know that I try and maintain a positive stance on everything happening to Hugo, and our family. I’ve made a conscious decision to try and find the silver linings in each situation because a) I don’t think anyone would want to read a depressing blog and b) moping gets you nowhere. So I try to keep upbeat, laugh at what I can and remind myself that it could be worse.
However, being optimistic isn’t always possible. This goes for whether you lead a relatively ‘normal’ (sorry, I hate that word) life, or whether you have something shit to face every day. Unfortunately, the last couple of weeks have fallen into this bracket. Mainly because Hugo has been poorly. Normal (sorry, again) poorly, not liver poorly. And he’s been thoroughly miserable with it, which is fair enough. But we’ve really been missing our cheeky, happy little man, and not having him around has made it much tougher to deal with the daily grind.
Our days revolve quite heavily around numbers at the moment, with blood levels and feeding targets to try and keep on top of. So it seems fitting to tell you about our last couple of weeks in numbers.
3 – The number of trips to hospital we had last week. Also the number of blood tests he had. This shouldn’t have been the way the week panned out, but his first test on Monday (purely routine) clotted. So I had to take him back in the next day. We managed a couple of days at home after that, but then on Good Friday he was being very poorly (from both ends. I’m sure you don’t need the details) so we had to take him to hospital for IV fluids and observations overnight and through the Saturday.
1.5 – The number of albumin infusions Hugo had. The 0.5 happened on Tuesday. King’s advised that he didn’t need albumin, but I ruled against them as his albumin level, at 29, was low, he has a history of requiring infusions (his running total is now 10.5), his belly was getting larger and more tense, and (most importantly) he had a very precious cannula in that I was determined would be used; I didn’t see the point in taking it out and repeating bloods two days later, by which time he would have definitely needed albumin, when he had a working cannula in. It just seemed like needless pricking of my baby boy. So, anyway, we went ahead and gave him albumin. But the cannula wasn’t as effective as we’d hoped, it stopped working halfway through; Hugo’s hand started to swell and he was screaming in pain – even our nurse commented it was very unusual for him to be so upset. So they took it out and he got half the infusion (and a LOT of cuddles). Still, better than nothing, I guess.
30 – My new age. Yes, I turned 30 on Saturday. Waking up on one of QEQM’s blue plastic pullout chair-beds with Hugo being poorly (he was sick on the stroke of midnight, and then sneezed his tube out at 7am. I kid you not) and without my hubby was not an ideal way to start the day. But it got better as the day went on. Ross arrived early with a McDonald’s breakfast and some wonderful gifts (and my first ever Mummy birthday card). My mum and sister came and cheered the room up with banners, party hats and a lovely yellow cake. Instead of a pub lunch at the Jackdaw in Denton (where we got married a couple of years ago), I had a bizarre hospital canteen lunch picked by my mum (a very questionable shepherd’s pie and chips – she’s still being teased about this). We even managed to coax some smiles out of Hugo; these have been very rare the last couple of weeks, so this was a real treat. The doctors decided mid-afternoon to make use of Hugo’s cannula and gave him albumin before discharging him, so my sister took me home and we managed to go out for one or two (or ten) birthday drinks in the evening.
Also, 30 is the target minimum albumin level. Hugo’s is regularly below this. King’s have now said that there’s not much point in chasing that number, as he’s never going to hold the albumin. It’s now more a case of monitoring the ascites and not letting it get too bad. Hurry up, transplant…
22 – The number of days Hugo has been on the list, so far. He’s now also on the priority list, although we’ve been told the list for a B+ liver at King’s is very short, so we don’t think this will make much difference. We’re still jumping out of our seats whenever the phone goes. Ross is totally determined to be the donor, while I’m wishing for a cadaveric liver to become available before it comes to that. Either way, we’re still waiting.
2 – The number of cakes I got for my birthday. This is only worth a mention because the nurses on the ward very sweetly managed to source and decorate a cake for me when they found out it was my birthday. Becoming part of the furniture there has its perks.
Also, the number of times we had poo on our carpet over Easter. Poo. On our carpet. Once was Hugo, who managed to explode some out of the side of his nappy when bouncing in his jumparoo. The first we knew was when we looked up from our lunches (while hungover, may I add) to see him happily stamping away in a puddle of poo. He managed to totally avoid the jumparoo itself though, which was a stroke of luck as I don’t know what he’d have done without it while we were washing the seat. The second was a friend’s baby, who wriggled off the changing mat mid-change and onto the floor. Thankfully, Ross is a little obsessive over cleaning, and we therefore always have a cupboard full of Vanish and bleach.
Unknown – The amount of prosecco I drank on Saturday night. I had originally planned to go out with Ross and some friends, and Ross’s mum was going to babysit. However, when we had to take him into hospital on the Friday I decided to cancel – I was in a total state after the stressful week we’d had, and I couldn’t think of anything worse than facing people. Even people that I know wouldn’t care if I was a crying wreck all night. I couldn’t tell how Hugo was going to be, and I didn’t want to feel pressured to go out on top of caring for him, so I cancelled. However, as he perked up on the Saturday, and the doctors were happy for him to be discharged after the albumin, I decided that there’d be no harm in having one or two drinks with my sister. We ended up meeting up with one of my school friends who Ross had arranged to come down from Norwich as a surprise, and another couple of friends. And I ended up having a brilliant night and getting totally shitfaced.
6 – Hugo’s age, in months. I won’t go too deeply into how it makes me feel, that he’s six months old (and I’m six months through maternity leave already!), and we’ve spent four of those months living in and out of hospital. Suffice to say, it doesn’t fill me with happiness. Don’t get me wrong. I love the bloody bones of him. He’s totally and utterly completed our lives, and I cherish every day with him more than I could ever put into words. But I so desperately want to be able to really enjoy being his mum, just for a bit, without the constant stress, anxiety and heartache that we’ve suffered with him. To obsess again about sleepless nights, vaccinations and whether he’s hitting his milestones would be such a privilege at the moment. Rather than albumin, bilirubin (which, incidentally, is currently about three times higher than it was before his Kasai in December, and is steadily climbing), hernias and medicines. To my mummy friends reading this – please don’t misconstrue that as me belittling the day to day challenges we all face as parents, or thinking that they are insignificant. I’m not, at all. I know being a parent can be incredibly difficult, whether your baby is well or not. I just wish, from time to time, almost ruefully, that they were my only worries.
5 – The number of NG tubes that poor Hugo has had since last Monday. The first one was a routine replacement, and that should have been it for a month. But for some reason, the tube that we’d been sent as our spare was really short. Not useable, in fact. So just a few minutes after that was put in, it was taken back out again and replaced with a longer one. Then, at 7am on my birthday, Hugo did the most almighty sneeze, and out popped the tube. He managed to pull the third replacement out on Tuesday night, and then sneeze the fourth one out the following morning. His fifth tube of the fortnight, so far (and MASSIVELY TOUCHING WOOD), is still firmly in place. It’s such a shame, as his mood when the tube is out is so different. It’s probably because, when he doesn’t have it in, we’re not forcing a huge volume of milk (800mls a day is the current target from King’s) into him that he doesn’t want (but absolutely needs). I can only guess it’s like when you’re nine months pregnant, and not feeling much like eating, but being forced to eat a giant roast dinner five times a day. It’s going to make you grouchy, uncomfortable, and a bit vomity. On a positive though, we’ve now started to put most of his meds down the tube, too. We know it might mean he has it for slightly longer, but the little guy just needs a bit of a break, and this is one way we can give that to him. He’s even started to let us feed him real, actual food now, without screaming. Which is pretty lovely, and very, very messy.
The number of people who have looked at my blog (and a total of 3,634 views) at the last count. Am a bit amazed by this. Thank you!