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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