With her permission, I'm posting a few of Maureen's PM's as an update. I've edited a few personal bits out.
Just thought i would update you on Reece. He stayed home all weekend, well here and his house, I meant he didn't have to rush back into hospital.
Yesterday he went to school for sit down only lessons as he has not much energy and also had his 3 vitamin injections last week and the Vit D hurts so bad he cant walk for about 5 /6 days after. He has no meat on his legs you see. Anyway at school he felt poorly, went to the loo and it was a strange coloured poo in the loo, did another last night at home and Stacey called his surgeon this morning to try and describe it, he seems to think it may be dark blood. There is a big meeting planned for tomorrow which is medical team only not u, as his surgeon is at a loss as to what is going on and needs a group discussion with other specialists. He has said today with this possibility of blood in his stool he is going to go in with the camera and have a really good look around. This will be done in theater when he can schedule it as he is needs to see his diary first obviously.
Not too good, his poop has gone all black so the surgeon wants him into Leeds now ready to go to theater tomorrow morning, to start with it will be a camera down his throat to see whats going on then pending what he sees, we just have to wait and see.. Possible bleeding upper bowel but nothing definite. He is fine in himself apart from extremely pale and tired and reluctant to go to sleep.
x
He was first on the list but struggled with the enema. Causing him a lot of pain, so Stacey has just managed to give him another one but he is in bits. She said he is distraught. They can not go into look if he cant clear up. I said maybe there is not much up there because if Reece was having a normal day what goes in goes through him within 1.20 mins, obviously he is not having a normal day but has been nil by mouth.
Plus they took his bloods in the night and most are OK fro him apart from his HB count is low which also can be a sign of blood loos they said but not as low as what he has been before years back.
He has gone under just.
He's just come out.
Worded , good news in a way.
Not what they thought it was whatever that was they didn't want to worry us.
His jejunum is very stretched and then goes narrow , they think this is from the very big op he had in Manchester which has also caused a lot of scar tissue which is also causing problems. They are not in no way saying Manchester was wrong and said they had to start the op somewhere but this is the result of that and scar tissue with such big op's in inevitable..
He does need surgery but they are reluctant at this point to do more as it would without doubt cause big problems later on. He thinks when Reece is eating solid foods they get lodged in this area causing inflammation and bleeding at it is inflamed. His hope is to plan a test that can be performed on this area but he is not too up to speed on it and will need to look into it as it is only something he has heard of not performed, which may take some time. Meanwhile it is all about making sure Reece stays comfy until this can be done so is being put on a few medications which may help short term. He is organising another meeting with the team to discuss the results.
So breath again for now.
Thanks Tom,
Maureen.
Morning Tom,
Reece went back in to Leeds in the night, he is not well again, not eating or drinking. They are putting a drip on to rehydrate him. They have also done a scan again this morning and it shows no blockage but greatly dilated bowel, worse than 2 weeks ago.
They are going to do a test on him, the basics are it is a tiny camera which he swallows and it goes through his system completely, if no results from that they are going in.
Take care
Maureen.x
Thanks Tom.
He is going to have a contrast done this afternoon on the lower part of the bowel again, this will be at 3.
They are infusing a bolas antibiotic into him now and also a high dosage of fluids to rehydrate him then he will be kept on a maintenance drip.
x
Hi Tom,
Reece went to theatre yesterday. Quite a long op. About 5 hrs on his bowel. He has a few problems but is doing well post op. He needs to go back on TPN so whilst in theatre tried to put a line in but his veins are severely abnorma so theycan only put a temporary one in in his leg. He is on morphine and had an epidural to ease the pain on his bowel until it settles.When they woke him up Stacey said he punched the air and said I did it, i made it then when straight back to sleep. Ignore spell mistakesno time to reread it.
Xx
Morning Tom.
Reece out of hospital he got home Wednesday but he is extremely thin with an N G tube that we aspirate any liquid off his tummy should he feel sick. When I say thin I am not exaggerating he looks terrible his eyes are sunkenand he walks stooped due to the operation but saying all that the surgeon and team or once again astounded as to his recovery speed.He has tried to eat whilst at home he can have 6 light meals a day but he is not tolerating this either. although he was feeling poorly he was desperate to see his grandad and wanted some time together alone with him so they went to the pictures to watch Jurassic Park as he wanted to see this film but he doesn't want to go when there are other children there.
This morning early hours he had to return to hospital as he can no longer eat or drink due to feeling extremely sick and in pain. Not sure if I told you but they could not place a central line in his veins when he was in theatre due to problems with them. It is looking likely that he will need to go back on tpn although it was mentioned previously it was not started he will also have to have another temporary line put in should this be needed.
It is Stacey's birthday today they did have plans but obviously this has come to a grinding halt. But tonight if he is ok today Darren will sleep at the hospital with him and I shall have the baby here that way they can at least have a meal together and try and relax a little that's if she wants to.
Hope you're all well love to Zelly.
I shall keep you updated as and when any changes occur.
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