Day 68

19/2/17 – Day 68

Still no bed in PICU unfortunately. Even so Arlo’s actually had a fairly good day today. He’s had a few periods of being really awake and alert which was lovely. He’s well aware of the ventilator tube now (despite being on 30mcg of morphine!) and keeps trying to pull it out 😱 He is doing quite a few breaths for himself now and his rate has gone down a little but the Dr says because of the pressure his distended tummy is putting on his little lungs he probably won’t be ready to be extubated until that’s sorted.

We’ve been a bit wary of doing his cares recently because of how poorly he’s been but we’ve been pushing ourselves the last few days and today we’ve pretty much done everything bar changing his stoma bag, we needed a bit of help with that.

He’s had a dose of furosemide to try and get some of that pesky fluid off and of course he did his usual trick that he does every time he has diuretics and waited until his nappy had been quickly whipped away before doing a huuuge wee everywhere so he had a full bed change. His nurse decided to take the opportunity to weigh him at the same time and his current weight is 1.961kg. That’s 4lb5oz!! We think some is fluid but only a little. He’s more than doubled his birth weight! He does look much bigger suddenly. Feels like all progress has been paused for since Feb 1st and I think we forget he’s almost 10 weeks old now! 😱

In other news his crp is now 12.6! That’s almost normal so his antibiotics have been stopped. Hopefully he’ll have a bed at Children’s tomorrow but either way the surgeon will be coming to see him so we should have some sort of plan at least by this time tomorrow. I think they’ll suggest dripping a little milk in to see what happens. I’m not sure how I feel about that. I’m scared it could make any potential blockage or kink worse. On the other hand we need to get out of the limbo we’re in at the moment and maybe a few drops of milk might wake his gut up… who knows, I think I’d feel better if he at least had the scan to check for blockages first though. It’s difficult. All questions I can ask tomorrow though (probably repeatedly because this whole thing has made me quite demented 😆).

This was just after he was weighed today. This hat looked tiny when I got it out of the drawer, until I put it on him then it suddenly became too big! Don’t think he was too impressed with it. I love this picture though, it’s such a classic Arlo face, that pretty much says ‘you’re all ridiculous, now please give me some milk or just go away’ 😂

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Day 67

18/2/17 – Day 67

Hard to believe this was almost 2 weeks ago! The night before his surgery. No bed for Arlo in PICU today… We may have to start looking further afield if there isn’t one by tomorrow. That could mean Bristol, Liverpool etc. Or his possible kink could possibly unkink itself in the meantime… We live in hope! 

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Day 66

17/2/17 – Day 66

Day 11 post surgery.

Time for another update. My memory is shocking at the moment so there may be some bits of this that aren’t quite right but I’ll try my best.

Working weight is now 1.741kg/3lb13oz! 😱 It’s definitely a little bit out though because of the fluid, poor guy is still so puffy 😞

The last few days have been difficult. My heads a bit all over the place so I don’t know how much of this I’ve already explained but Monday his belly blew up again and crp had risen. He was started on another antibiotic, Vancomycin, to go with the Meropenem he’s already on. Day 5 of Vancomycin today and day 12 of Meropenem. Monday night he was a bit more settled but Tuesday morning he went downhill again, oxygen went up, vent settings went right back up, heartrate went a bit crazy, he had to have his morphine turned back up and his aspirates from his ng tube that had started to clear went dark green again. They like the stoma to start working after about 3/4 days but this was day 8 and so far nothing so when the surgical nurse came to see him she placed a catheter into his stoma to check for blockages and to rinse it out. A ball of mucous came out but nothing much else. One positive was that his crp had dropped from 98 to 47 and his platelets had risen. The surgeon explained that due to the state of Arlo’s insides when they’d opened him up they were expecting this to be a slow process. He’d had to have a full wash out during surgery and there was a lot of inflammation/edema.

Thankfully he did seem to settle a little overnight Tuesday and Wednesday morning there was a tiny bit of watery ‘something’ in his stoma bag. It may have just been from the rinse the day before though. Either way we were excited, it had to be better than nothing, right?! The vent rate was turned back down (first to 50 then 45) and his oxygen had come back down to around 40/50. The Dr thought his tummy looked a bit smaller than Tuesday but bigger than Monday. He also said he could hear some rumbling which he hadn’t heard before so hoped things might be beginning to move. He had a scan of his tummy around midday and that didn’t show anything too unexpected, a collection of fluid and lots of air everywhere else. In the afternoon a different surgical nurse and the surgeon came to see Arlo again. The surgeon examined him and said ‘his tummy looks smaller than yesterday but bigger than Monday’ so at least they agree! He explained that he was disappointed the stoma hadn’t started working yet and that he’d hoped it would be working by now. He said he didn’t think it was more infection, which would be the worse case scenario, but rather a ‘mechanical’ issue either from a narrowing of the bowel or a ‘kink’ causing a blockage or it could be inflammation and his gut still recovering and not really starting to work again yet. He said if things don’t start working soon or the crp rises/he becomes clinically unstable again then he’ll need to go back to BCH so they can open him up again and see what’s going on.

When we went to bed Wednesday night he was very settled. I held his hand and stroked his little forehead for a while and he seemed perfectly happy. Morphine had come down a bit, rate on the ventilator was 35! Oxygen was 40. Unfortunately though at about 4am he went off on one again. Desaturating and thrashing about. His morphine had to go back up and his oxygen went up to 80. Rate had to go back up this morning to 55.

Yesterday morning there was a very small amount of air in the bag but not really enough. At one point around midday he was very unsettled, crying and thrashing around. I’ve never seen him like that before. It was awful to see and not really be able to do anything to help him. The surgical nurse came and did another washout but nothing came out this time. So the surgeon decided he wants him back over at Children’s so we can try and work out what the problem is.

This morning he’ll hopefully have another tummy scan so they can get a really good look at what’s going on and then we’re just waiting on a bed in PICU and for the transport team to come. Could be this morning, could be tonight, could be tomorrow. In the meantime I’ll be hoping with everything I’ve got that the stoma just suddenly starts working on its own. Unlikely but I’ve seen this boy turn logic on its head and defy the odds many times before, there’s always hope…

Oh and here’s Arlo doing his impression of Salt Bae(bee) 😂
(That’s a cannula in his scalp there, poor little thing is running out of spare veins 😞)

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Day 62

13/2/17 – Day 62

Another mixed bag of a day yesterday (when aren’t they!). Get the rubbishy bits out of the way first. Arlo’s belly blew up yesterday afternoon, his oxygen had to go up and he started having desats. He was crying, silent little tears because he can’t make a sound while he’s on the vent. Heartbreaking to see. X-ray was done and it showed a lot of air in his belly and bowel. It also showed his ng tube sitting in his throat! So that was replaced and lots of air and green bile was aspirated out of his poor tummy. He settled a little since then, oxygen came back down a bit too. However his CRP has risen again so he’s had another antibiotic added. I’m worried but we’re trying really hard to stay as positive as possible for him.

On the brighter side, he’s looking much better. He’s pink and very very slowly the fluid is starting to come off now, he still looks huge though. His working weight is 2lb12oz but his actual weight on the scales is over 4lb! The extra is all fluid though, he’s been nil by mouth for 13 days! He’s not having diuretics at the moment, the plan is to keep him in a negative fluid balance, that hasn’t happened for the last few days though so that might explain why he’s still very edematous (or is it oedematous? I have no idea, we just like pretending we understand the big words, Sammy’s favourite is still ‘extravasation’). His settings on the vent have come right down and he’s triggering loads of breaths for himself. Oxygen has gone back up a bit this morning but I think Arlo’s always had really variable oxygen requirements, even before he got poorly and he was on CPAP he would swing anywhere between 28-60, I think… The surgeon has just been to review him and he thinks he may an infection and that’s caused the belly swelling but he’s not too concerned at the moment. Said if things don’t settle he may need a drain to remove any pus that’s inside but as his belly has gone down a little, his aspirates from his ng tube are becoming more clear rather than pea green and he’s doing okay ventilation wise he’s happy to leave things alone for now and review him again tomorrow. So fingers crossed for a falling crp tomorrow and a smaller less veiny belly!

Yesterday after 49 long days (literally one illness after another!) Arlo’s big brothers finally got to come and see him again. The last time was Christmas Day! Reuben had a great time chatting away to one of the Doctors. He was very interested in how much ‘air’ the ‘bentilator’ was delivering to his baby brother. Rowan was more interested in the toys in the parents room and a box of Maltesers he’d snaffled from somewhere. This was also the first time we’d seen them in 12 days too because obviously we’ve been well over an hour away since Feb 1st and they’ve both had the winter vomiting bug during that time so the risk of bringing that into an intensive care unit isn’t one we could take. It’s been awful not seeing them but unfortunately this is the reality of having an extremely poorly child. It’s horrendous at times but we’ve just got to cling onto the hope that one day we’ll have our boys together, at home, where they belong 💛

P.s How much like Rowan does he look in this picture?! 😍

 

Another mixed bag of a day yesterday (when aren’t they!). Get the rubbishy bits out of the way first. Arlo’s belly blew up yesterday afternoon, his oxygen had to go up and he started having desats. He was crying, silent little tears because he can’t make a sound while he’s on the vent. Heartbreaking to see. X-ray was done and it showed a lot of air in his belly and bowel. It also showed his ng tube sitting in his throat! So that was replaced and lots of air and green bile was aspirated out of his poor tummy. He settled a little since then, oxygen came back down a bit too. However his CRP has risen again so he’s had another antibiotic added. I’m worried but we’re trying really hard to stay as positive as possible for him.

On the brighter side, he’s looking much better. He’s pink and very very slowly the fluid is starting to come off now, he still looks huge though. His working weight is 2lb12oz but his actual weight on the scales is over 4lb! The extra is all fluid though, he’s been nil by mouth for 13 days! He’s not having diuretics at the moment, the plan is to keep him in a negative fluid balance, that hasn’t happened for the last few days though so that might explain why he’s still very edematous (or is it oedematous? I have no idea, we just like pretending we understand the big words, Sammy’s favourite is still ‘extravasation’). His settings on the vent have come right down and he’s triggering loads of breaths for himself. Oxygen has gone back up a bit this morning but I think Arlo’s always had really variable oxygen requirements, even before he got poorly and he was on CPAP he would swing anywhere between 28-60, I think… The surgeon has just been to review him and he thinks he may an infection and that’s caused the belly swelling but he’s not too concerned at the moment. Said if things don’t settle he may need a drain to remove any pus that’s inside but as his belly has gone down a little, his aspirates from his ng tube are becoming more clear rather than pea green and he’s doing okay ventilation wise he’s happy to leave things alone for now and review him again tomorrow. So fingers crossed for a falling crp tomorrow and a smaller less veiny belly!

Yesterday after 49 long days (literally one illness after another!) Arlo’s big brothers finally got to come and see him again. The last time was Christmas Day! Reuben had a great time chatting away to one of the Doctors. He was very interested in how much ‘air’ the ‘bentilator’ was delivering to his baby brother. Rowan was more interested in the toys in the parents room and a box of Maltesers he’d snaffled from somewhere. This was also the first time we’d seen them in 12 days too because obviously we’ve been well over an hour away since Feb 1st and they’ve both had the winter vomiting bug during that time so the risk of bringing that into an intensive care unit isn’t one we could take. It’s been awful not seeing them but unfortunately this is the reality of having an extremely poorly child. It’s horrendous at times but we’ve just got to cling onto the hope that one day we’ll have our boys together, at home, where they belong 💛

P.s How much like Rowan does he look in this picture?! 😍

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Day 59

10/2/17 – Day 59

Look who’s finally awake!

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8 weeks (and 2 days) old, 33+3 corrected. Now in hospital number 4…! Arlo likes to travel!

I’ve been trying to write an update for days. So much has happened though, it’s too much to process and I don’t think I’m ready to fully relive it yet. We’ve found being on PICU emotionally exhausting, far more so than NICU. Being surrounded by desperately ill children, some of them the same ages as our older boys, and then realising the reason you’re there is because your own child is also critically ill is horrifying. Your whole body is on red alert at all times, it’s just constant adrenaline and anxiety. Thankfully Arlo was looked after by some truly amazing people who just took such brilliant care of him (and us!) and they saved me from going totally mad with worry!

So in a nutshell (big nutshell), Arlo had his surgery on Monday. He’d grumbled on for a few days with suspected NEC but nothing definitive enough to warrant surgery until the night before when there was a change on the X-ray that looked like air in the walls of one of the big loops in his small intestine. His platelet count had also started to drop and lactate was slightly higher. The surgeons came and went over the consent forms with us. They were pretty terrifying. Obviously because of Arlo’s size (2lb-ish without all of the fluid) and how poorly he was there was a risk he wouldn’t survive surgery. There was also a risk they’d open him up and discover the damage was too far gone, in which case they’d close him up and bring him back with nothing possible to be done further to help.

He went down at 11:30am. Before this he’d had a central line placed behind his ear into his jugular and was given some platelets and more rocuronium to keep him still. The anaesthetists came and he was bagged for the walk from his bed space to theatre. We went as far as the lift with him and then gave him a kiss goodbye and managed to wait until the doors just about closed before we broke our hearts crying.

We were told to expect the operation to last around 4 hours, but obviously they wouldn’t know for sure until they opened him up. I don’t know how we got through the next few hours. We went to the Disney Store and bought The Good Dinosaur on DVD for Reuben & Rowan. Then decided to go and get a coffee near to the hospital but as soon as we got near my phone rang and they said he was back, less than 2 hours after he’d gone down. I immediately thought the worst, it was so quick, too quick. Luckily as we ran back to PICU we bumped into the anaesthetist in the corridor and he said ‘he’s okay’. Best 2 words ever!

The surgeons were there waiting to speak to us when we got to Arlo. They told us he does have Necrotising Entercolitis and his bowel had perforated allowing poo to leak out which was why he’d been so poorly but luckily for him it had happened right at the top of his bowel and his body had contained it fairly well. They’d removed 15cm of dead tissue from his small intestine and made him a stoma on he right hand side and a mucous fistula on the left. They said the position of the tissue meant he had a good amount left for reconstruction at a later date.

He was surprisingly stable straight after the surgery, his ventilation requirements came down a little and he just slept. The next day was a bit busier. The stoma nurse came and gave us his stoma kit. She also put his first bag on and covered his fistula with gelonet gauze. Arlo’s arterial line had collapsed during surgery so tissue viability came to look at that. He had a brain scan to check on the bleed he already had and check there were no new ones. Then he needed scans of his arm where the arterial line had been, one on his foot where another line had caused swelling and lastly an echocardiogram.

The day before the surgery I said to Sammy I thought something had changed with his stats. His heart rate was a little higher and blood pressure a bit different. And that I’d seen them look like that before, when he had his pda. I mentioned it to his Dr who said actually he could hear a definite murmur so it was no real surprise when the echo showed his duct had reopened. We were told this could happen through illness. He is still very swollen with excess fluid and the echo also showed a lot of fluid round his heart so it’s possible it could reclose on its own once he gets a bit better but for now the Drs are just going to keep an eye on it. If it doesn’t close on its own, and he becomes symptomatic again (hard to tell at the moment as he’s still ventilated and full of fluid) he may need pda ligation surgery but fingers crossed that won’t be necessary.

We were told fairly quickly after his surgery that he’d be going to Birmingham Women’s Hospital NICU as soon as a bed became available. So yesterday we arrived at hospital number 4. The reason for this is while he still requires ‘intensive care’ for his surgical needs, and still needs to be seen by the surgical team daily, he’s still a 25 weeker neonate so NICU is far more suitable for him than PICU. He’ll remain under the care of BCH surgical team and they’ll visit him here daily for the foreseeable though.

Today he seems to have settled in. His ventilation requirements have come right down. Yesterday he wasn’t really taking any breaths for himself. Today he’s taking lots. Oxygen is right down and the rate has been turned down to 35 and he’s coping fine with that. He was actually awake this morning!! First time in about 8 days we’ve seen him properly wake up. His crp hasn’t really changed today but apparently it’s relatively normal for it to plateau a bit and his platelets have dropped a little more. I’m not going to pretend I’m not worried because I am but just have to focus on the good things as much as possible and wait for that elusive first poo!

Day 55 Part 2

He’s out!! It went well and was far quicker than they thought. Will update properly later but for now, he does have NEC, there was dead tissue and his bowel had perforated (last week we think) and there was poo leaking out so they’ve removed a section from the top and he has a small stoma. The next few days are critical but with Arlo’s fighting spirit we’ll get through it.

Thank you all as ever for your amazing support xxx

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Day 55

6/2/17 – Day 55

Right Arlo’s little army we need your help now more than ever before. As Arlo’s hasn’t really shown any improvement since we were moved to BCH and his X-rays look a bit more suspiciously like NEC the decision was made this morning to take him to theatre so the surgeons can remove any dead tissue and possibly fit a stoma. He went down at 11:30 and they expect to be around 4 hours, it all depends on what they find.

It goes without saying that it’s high risk surgery, and we’re obviously beside ourselves with worry. Please please please keep him in your thoughts, pray for him, send him positive thoughts. I have no idea if it’ll help but surrounding him with as much love and support as possible can only be a good thing, right?

Come on little Arlo, we all love you so much and your brothers can’t wait to bring you home.

 

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Day 53

4/2/17 – Day 53

Firstly we owe a huge huge thank you to so many people, we’ve just been utterly overwhelmed by the amazing support and help and love and just everything over the last 24 hours or so. Jodie & Laura & everyone at The Butchers Bar, thank you both from the bottom of our hearts, what you’ve done for our family is just incredible, it’s lifted a huge strain and we’re so so grateful. I’m having to be quick, too quick to say a proper thank you (if we ever can!) but I want to update quickly too. Seriously though, we’re completely overwhelmed, thank you all so so much.

Sorry for leaving everyone hanging a bit. Not a huge amount of change to update BUT he is stable at the moment. He had a little (terrifying) blip yesterday at around 4pm but the Drs & Nurses are fairly sure it was because his Rocuronium (paralysing drug) had been stopped and his morphine lowered so he ‘woke up with a bang’ which apparently isn’t unusual. They think he probably realised there was a tube in his throat/coughed and blocked the vent tube with secretions. Scared the living daylights out of us at the time but he’s remained stable since which is good.

They’re still not entirely sure what’s going on. He has areas of his gut that look like nec but it isn’t presenting quite as they’d expect so the surgeons don’t want to go in right now. They’re reviewing him regularly and if he deteriorates at all they’ll take him to theatre but for now they’re happy to keep a very close eye and see what happens.

He’s also had a brain scan and that shows no new areas of bleeding since his previous grade 2 IVH so that’s really good news.

He’s very swollen from all the fluids he’s had over they last 48 hours so he’s back on Furosemide (diuretic) to help with that. He’s on 3 types of antibiotics still. His adrenaline and dopamine have been stopped now and his blood pressure has held which is really good because that was one of the things the Drs at Telford were really battling with, it just kept dropping. He’s still quite yellow at the moment. His vent settings have been turned down a bit but he’s not really breathing above it at the moment or trying to take breaths for himself. That’s possibly because of the morphine too though, he’s been like that before when on morphine and intubated I think. Heart rate has come down nicely. It was at around 210 at one point which was really frightening but it’s about 130-140 now.

Obviously he’s still very poorly and remains in the paediatric intensive care unit at BCH but in the words of my wonderful sister who, along with others, has been so so amazing these last couple of days (and weeks!) Yesterday the world felt like it was ending. Today there is hope.

 

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Day 51

2/2/17 – Day 51

Right. Don’t really know where to start. Wasn’t even sure I should update but this is the easiest way to update everyone at once and I said when I started this that I wanted to share Arlo’s story for other preemie parents so it’d be pointless if I don’t share.

Arlo’s not good. He has septic shock and more than likely necrotising enterocolitis (nec). Last night he went rapidly downhill. Requiring full ventilation with oxygen at 100 but they were still struggling to stabilise him. We were asked if we wanted the chaplain to come and baptise him. I can’t find the words to describe just how awful it was to hear them say that about our tiny perfect little baby.

During the night he appeared to rally a little and we thought he might be responding to the treatment but by morning he was critical again. At around midday we were taken into the ‘quiet room’. Nobody wants to go into the quiet room. It’s not a room for good news. We were told in a nut shell that our little boy is seriously ill. Too ill for all the treatment Telford could offer him but at that time too unstable to survive a transfer to anywhere else. The Doctors and nurses at Telford have worked unbelievably hard to help him all day, along with the head consultant and nurse of the Kids and Neonatal Transfer Service and by some miracle they made a tiny bit of improvement, not a lot, but enough to transfer him.

So we’ve been blue lighted to Birmingham Children’s Hospital PICU where the surgical team were waiting for him. As things stand right now, he is still critical and has been given drugs to paralyse him to give his little body rest BUT he has stabilised slightly. The surgical team don’t want or need to operate right now. They’re hoping they can stabilise him more overnight and review in the morning.

I’m really really sorry if this has upset anyone but I hope you understand why we’re sharing this. Please please please keep him in your thoughts and prayers. There’s nothing we can physically do for him right now, we’re utterly helpless, but the more of you rooting for him the better. I don’t know what else to do.

Oh and as if the universe wasn’t quite dishing out enough shit to us, our little Rowan was admitted to Telford Children’s ward today, just one floor below us, with dehydration and anaemia. He’s fine but seriously, why our babies!?

 

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