Wednesday 12th we got up early to make sure HUBBY had something in his stomach before what the consultant had told us was her main day with us. We proceeded to the spinal unit and put HUBBY onto the allocated bed. The consultant and intern arrived shortly afterwards to explain the procedure for the Baclofen test dose, which was to be carried by means of a lumber punch type injection. HUBBY was then turned onto his bad left side, so was no comfortable from the oft. Well firstly the intern had a go at finding the sweet spot between the vertebrae, poking the very long needle into his lower back, then the consultant had a go, HUBBY endured this for nearly an hour with short pauses for him to get the feeling back in his arm. HUBBY was sceptical about this procedure in the first place so I am there hoping against hope that they sort it soon or I know he will abort the whole thing. Eventually they decide the only way is to do the insertion with the help of x-rays. So off we all go down the cold corridors to the x-ray room. Pat slide HUBBY across onto the bed, try and hold him on his side but curled up as much as possible to open up the spaces between his vertebrae. Every time the machine moved it knocks his knees painfully, but this did enable the consultant to finally give HUBBY his test dose of Baclofen.
So poor old HUBBY was then returned to the ward rather bruised and battered to await for the medicine to take effect. It took about an hour to start working he said everything felt numb and he could no longer move his toes. The injection took so long to perform we missed yet another physio and OT session although both did come to see us. HUBBY stayed in bed at first so that blood pressure etc could be monitored. Which fell very low indeed, 68/38 at one point the nurses felt a bit concerned over and wonder whether he would be able to go for his scheduled x-rays. HUBBY said he was going no where anyways until he had eaten and so he did. The injection began to work as for the first time in two years he was able to lie in bed with his legs straight and cover them under some regulation hospital blankets. Mid afternoon he was able to be wheeled to his x-ray and for a change I did not need to be present to make sure his legs stayed where they wanted them. He had some x-rays taken of his neck, ankles and left knee. Both the rehab consultant and orthopaedic surgeon were interested in seeing the results. He was supposed to have a bone density scan but this got pushed out because of the time.
Afterwards HUBBY wanted to get up in his wheelchair, I was able to easily straighten his legs and noticed that the right one especially flopped over to one side making it rather awkward for me to put his socks and shoes back on. Very strange for me having this totally flaccid body now in front of me not fighting my every effort to get him dressed. HUBBY did look a lot straighter in his chair and even propelled it himself without falling over to his left this time. So to the onlooker the injection looked to be a success, we had found something that works. HUBBY was less convinced after the days events, not impressed with how long the lumber punch took, missing his bone density scan and the feeling of the two pieces of rubber he was sitting on that used to be his legs. Wednesday we were both exhausted and had one of best nights sleep for a very long time. It is a shame it was that night that I carried out the smaller sleep study, which was supposed to investigate whether I was experiencing problems because of my broken sleep.
Thursday 13th, we had a discharge planning meeting with all of the team present, when over what the goals of the week were, achievements and future work to be done. I thanked the team for the extra help they have given us due to previous bad NHS experiences. Soon afterwards HUBBY’s orthopaedic surgeon came to visit and made it clear that yes HUBBY did in normal circumstances need a total knee replacement but he wants to wait and see whether he agrees to have the pump fitted and then starts to carry out standing regimes on his legs. At which time he feels it would be more appropriate to reconsider operating. The physio then came to talk to us for a while. After which we went to get some food, have a final session with the OT, hand over the keys of the GHU, catch our taxi back to KGX. Train to Peterborough and another taxi to home at St Edmunds Court.
Now back home HUBBY is being given some space to think about where he goes from here, to Baclofen pump or not that is the question my dear readers….