China trip Date : 04.09.06 - days 16-20
9am Dr Wang enters the room to see Sacha and to inform us of the day’s schedule.
9:30am Acupuncture - She is responding well now and is becoming more relaxed, today she cried a little when the needle was inserted into the top of her head but soon she began to laugh at someone sneezing in the background and after a while she tries to talk, she lay there taking in all of her surroundings for over 40 minutes.
10:30am One of the Mandarin speaking nurses calls us to another room to prepare her for the intravenous stem cell injection. Sacha lay there for a good 15 minutes while the nurse probed her limbs to find a decent vein to get going, she tried a couple of times in her hand and foot without success, eventually she found one in her arm and ties an elastic band to start the proceedings. Sacha was OK for a while until she started crying in pain as she could obviously feel the preliminary fluid pass through. Sacha was inconsolable and we decided this was not the right way to carry on so we agreed to try again later. As we understood later on that it was best for Sacha to be asleep so we tried to get her down after some food, unfortunately Sacha wasn’t having any of it and was easily disturbed by the nurses re entering the room every 10 minutes to see if she was asleep.
11.30 Sacha is called in to try again as the stem cells would need to be injected as soon as possible because they would
lose their effectiveness if left too long. A vein was found quite easily in her hand this time so the fluid drains
in again, after a short while she became uncomfortable and began too cry and moan again. We all had to console her
the best we could as time was running out and I didn’t want to put her through this again. The stem cells and the
Nerve Growth Factor seemed to filter through her little blood stream forever as I watch her in pain, moaning at
the nurse who was holding her hand…I wonder what she must have been trying to say to her!. Her crying alerted a lot
of attention from the nurses who all teamed around to see if they could assist, after a while Sacha became quite
tired and started to drift off to sleep. Unfortunately she was kept awake by the nurses when they chanted “sleep” every time she dropped her head!
After this fiasco we put Sacha to sleep in the comfort of her own bed. We allowed her to miss physio as she had been through a lot this morning. Later on we took a walk into the old part of town and pass the Imperial Palace which was unfortunately closed when we got there, it was getting dark too so we headed back home for an easy night of relaxing at the hospital.
Day 17
9:30am Acupuncture. Sacha not really with it this morning, a little rigid and tense - could this be because of the injection, I ask Jon and he says probably not, he explained that the body usually reacts pretty well and can make the patient quite hyper afterwards..who knows?
10:30am I put her on her feet and try to encourage her to walk.. she takes two small steps!.
Later on today I was discussing with Dr Wang about the brain injection, he asked if Sacha was sleeping OK, as if she was to have this operation she would have to be seizure free, he was concerned that if she wasn’t getting the rest she could be in danger. I confirmed that Sacha was doing really well and was getting more than enough sleep.
Jon and I had a long conversation over the pros and cons of brain surgery, for me this is still a really hard decision, even though they have some of the best neurologists around, I personally feel at this point in time that the risks outweigh the benefits. We don’t know how this is going to turn out eventually, it is more than likely she would need to return as Sacha’s disease is so complex and also relates to an enzyme deficiency amongst other underlying problems. I’m thinking the stem cells would need to be re introduced over time, or could this completely reverse my girls disease.. one can only hope.
At this moment in time I think the spinal injection will be enough for her but on the other hand we need to get the most out of this trip, but I also need to think that if anything goes wrong with the brain injection we could be in danger of losing her sooner than anticipated.
Day 19
We were all pretty tired today and eventually dragged ourselves up for Sacha’s acupuncture session. Sacha is becoming more tolerant of these long needles as she lays there relaxed for a good 40 minutes. The doctors are very impressed with Sacha’s progress as they see her calmer than before.
Sacha has oats and a banana mashed up for breakfast and chills out watching Teletubbies on the loop again!. She is eating really well as she consumes the whole bowl. After filling her up we put her on her feet hold her knees and support her back to maintain some of the lost muscles in her legs, the physiotherapist recommended that we do this for around twenty minutes, any longer and her muscles could tear. This is a regular exercise now and usually gives her enough time for bowel movements. After this I obviously change her nappy and massage her legs a little as they also said this was useful after keeping her upright. To me she has become too relaxed, where as before she could at least keep her upper torso up and was able to keep her knees straight without them buckling beneath her. At this moment in time I don’t know if her being so relaxed is a good thing, if it is, we have got to put a lot of work in to regain her balance.
We were taking Sacha to her physio appointment when I was called in to the doctors office to discuss the next injection with both Dr Wang’s, the younger Dr Wang explained that the procedure to inject into the basala ganglia (located in the brain near the left side of the cortex) is not really necessary in a girl of Sacha’s age, he suggests the spinal injection will do just as good, possibly even better. I was quite concerned that Sacha had a lot of seizures on one day prior to coming to China and was worried if she had really recovered by now, Dr Wang thinks 3 or so weeks is more than enough time for the brain to maintain stability. He then told me that Sacha had a full dose of sleeping medication for her MRI here and didn’t work on her, this is because her tolerance levels are really high due to all the anti epileptic medication she is on. If she was to have the brain injection it would be touch and go if should we be able to sleep again through the operation, if she was given too much sedative she could have respiratory problems and the way he described Sacha’s blood shooting out of the drilled hole was too difficult to comprehend.
Jon joined us in the meeting as he is all for giving Sacha every possibility whilst we are here, he also indicated that the results have been positive when injected to the brain in another boy with Battens before. Both doctors were slightly dubious of this method and seemed reluctant to inject into the brain in this way, however after more persuasion from Jon they then take the opinion this would not be so complex if they were to inject into another part of the cortex. The discussion was left at that if Sacha could be successfully be sedated then we could look at the brain injection, if not we would go for a spine and possibly another I.V injection. At this point I told them that I had to confer with Annette so I told them to hold fire until I get back to them.
Later on that night Jon joined us where we were dining at a steak restaurant, as he had been discussing Sacha’s situation further over dinner with the other doctors. He was eventually convinced that the brain injection was’nt the right way to go, but we could push them if we wanted to.
I spoke to Annette after this and she thankfully suggested that if I didn’t feel safe we should not go ahead and agreed to opt for the other injections as her recovery has been good so far.
What a day!.. I feel a lot easier knowing I don’t have to worry about any blood spurting out of her head, failing to breathe or her artery being hit, I could go on but I’m starting to make myself feel sick… I don’t know about you??. Anyway, even though it was time for bed after Sacha’s medication at 12 my head was buzzing ad I ended up staying up to 3am smoking continuously… I’m only a social smoker!
Sacha’s next injection will be on Tuesday 5th.
Day 20
Sacha had a good night’s sleep again and woke up fresh for her acupuncture session, she was so relaxed again as she lay there unperturbed for the next 45 minutes watching all the other patients come in with needles in their faces!. We always stay with her to hold her hands and legs just as a precaution as those needles are very long!. I blow a raspberry at her and she returns the gesture with the same mouth movement and blows a bubble, bless her she she was trying to copy me!.
After acupuncture she has her oats and banana for breakfast, which goes down very well and has actually helped to harden up her stools..was starting to get messy as we all seem to have dodgy stomachs at the moment!.
We had some brunch then headed out to the supermarket which took a little longer than anticipated as we went the long way round unintentionally, put it down to Rebecca’s bad map reading!. Sacha fashions a nice pink sun golfing hat which Jon and Sunny bought her and she sleeps the whole journey, we were cutting it very fine as we spent a long time milling around in the supermarket so we had to get a taxi back to the hospital as Sacha needed to return for her physio and Rebecca needed another massage - a lighter one this time!.
The Doctor has noticed Sacha was following people with her eyes where she hadn’t previously. I try to entertain her a little, she has been laughing when i cough recently, so I tried a bit of that and she coughs back!.
We have been giving Sacha as much vegetables we can. For dinner we made up some mashed potatoes, carrots, pak choi (green vegetable) broccoli, corned beef and mayonnaise to build her up. I see a little extra weight on her now so she must be eating better or eating more. Doctor also said we also need to be giving her 2 litres of water each day as they couldn’t extract enough spinal fluid in her previous injection.
Sacha seemed in pain crying a little when we put her to bed as I think she had a headache, took her a while to settle so we gave her some nurofen and she fell asleep within minutes.
So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!