I feel like we are finally getting somewhere, though it’s taken long enough.
We had a meeting with a surgeon who frankly didn’t look old enough to be out of school but that just shows how old I’m getting. He said he cannot be 100% certain but he is pretty sure that the culprit of all this pain and suffering is Crohns disease. I can’t say I was surprised, Crohns was one of the illnesses that had been thought of before, though when ever I mentioned it, doctors dismissed the idea as Neu didn’t have all the symptoms, but then many Crohns patients don’t.

After being admitted on Tuesday Neu was put on nil by mouth, given a glucose drip and had a tube put up his nose and down into his stomach, to draw off any liquid, food residue and gas build up, there was plenty of that. Neu found the tube dreadfully uncomfortable and was thoroughly miserable and grumpy, desperate for it to be removed, though even he had to admit it was helping relieve the pain in his belly.

Friday evening the doctor said they would leave the tube in place but seal the end so nothing more could drain out and see if the pain returned (which would suggest that there was more liquid etc to come out). Neu did suffer bouts of mild pain but nothing that some light pain relief couldn’t deal with and so, much to his delight, the tube was removed this afternoon. As other people in our corridor commented, it’s nice to see him more animated and smiling at last.

Neu will be given his first food tomorrow, probably rice water which will thrill him but this is a test to see how his intestines react, by the noise his belly was making this evening I will not be at all surprised if the pain comes back. I suspect he has a pretty serious blockage somewhere along the line and the surgeon has not ruled out the need for surgery yet, though they hope to avoid it.

We are waiting on a colonoscopy, the scowl on Neu’s face shows how he’s so looking forward to that, but once the result of that comes back, the doctors will hopefully have a better idea of what’s going on and there will be a further meeting to decide the next step. I get the feeling we will be here for some time yet, though the doctor said he hopes we will be transferred to a ward where things are more comfortable for all concerned.

I have learnt through my previous experiences here, that you cannot sit back and wait for things to happen but have to chase after things, ask questions all the time and double check absolutely everything. I no longer wait for the test results to “come back” but go to the relevant department and ask if they are ready, they won’t give them to me which is fair enough but I can then go back and tell the nursing staff that they are waiting to be collected.
Had I not done that for Neu’s CT scan the doctor still would not have seen the results as he was told they were not yet ready, I was able to tell him they were because I had seen them and that I had told the nursing staff that they were waiting to be picked up. The surgeon immediately sent someone to get them and so we are now several days ahead of where we would have been, had he not seen them yesterday he wouldn’t have seen them until Tuesday as it’s a holiday weekend.

Neu is on a glucose drip but when his bottle needed replacing the nurse said “oh there isn’t any left”. I went to find his superior and suddenly Neu had a glucose drip again. All this is tiring but at least it gives me something to do and some of the nurses are wonderful, I now know who to ask for advice and help.
Today I was able to reorganise Neu’s dialysis so that I will get 4 hours off during the day on each of his 3 dialysis days. This means I will be able to leave the hospital for a much needed break. Neu’s dialysis sessions had been booked for 7pm meaning it would be dark and definitely not safe to be outside in the area where the hospital is, bear in mind we have armed guards on the door and patrolling the hospital corridors.

We had been told by two different members of staff that his dialysis session could not be changed but after some words of wisdom from a friendly nurse, I went with Neu to the dialysis session this evening and spoke directly to the lovely lady in charge there, who swapped his session without a moments hesitation, saying she knew how important it was for me to be able to have a rest and get out of this place. I can’t tell you how good this little victory feels.

A good friend of mine has Crohns and I know how he suffered, at least in the early days. It is not a nice thing to have to deal with, especially on top of kidney failure but I am hopeful that we will find a way forward on this, and at least if it’s confirmed to be Crohns, then we will know what we are dealing with.

Onwards and upwards.

love Claire

Skype cpatvalente