Yesterday my sister-in-law was moved from the ICU to a Ward. It was a gruelling day for her. She moved under her own steam more in one day than she had in the last four weeks. Absolutely knocked her out. When I arrived there in the evening she was not very happy. She was still fairly congested so she was suctioned while I was there. (She still has her trach, but the doctor hopes to have that removed in the next couple of days.) Although she didn’t have a headache she was a little nauseated which she felt was a result of the hospital staff pushing her too hard. She doesn’t have any strength and they were making her do things that were too much for her. Unfortunately, this is going to be her new reality and I told her so. The rehabilitation phase will start soon and they will make her work hard to gain back her strength and capacity.
Being in a Ward is a significant change for her. She’s come from the ICU where the nurse/patient ratio is 1:2 or 1:3; now she’s in a Ward where the ratio on paper is likely 1:4 or 1:6, however is considered “dynamic” and consequently likely higher. The nursing staff will not be able to attend to her needs immediately and this will take some getting used to for her. However, the perk of being in a Ward is that now she can have some visitors (although yesterday she told me she didn’t want to see anyone). She’s a social creature and needs the distraction. The work she has ahead of her is going to push her to her limits, so distractions to take her mind off of her present reality may help make her existing situation a little more tolerable. Anyway, she’s got her voice back now and I suspect she is on her way to letting the nursing staff know what she needs!
Today I managed to get over again during the day to visit with my sister-in-law. A number of her machines have been removed as she continues to progress forward. Today when I saw her she looked absolutely exhausted. Not only that, it was also apparent that she felt miserable and was in no mood for company. Through simple signs she managed to tell me she had a headache, was completely exhausted and her that her stomach was causing her discomfort. I spoke with the nurse assigned to her and she told me that my sister-in-law had a good day from the perspective of making strides forward. There was not much they could do for the headache since my sister-in-law had tugged out her nose line which was how they administered her Tylenol. The stomach pain could be addressed by removing some of the gas that had accumulated and the nurse went about doing that.
Although she was pretty tired we visited for about 45 minutes. In the last few days she has made some pretty incredible strides forward, however, she is still in Intensive Care. Her breathing is laboured, although she is breathing on her own now – through the tracheostomy. She has a lot of congestion in her lungs and is being suctioned every few minutes, as well as taking medication to break it up. It is exhausting work trying to cough up all that phlegm as well as breathing on her own after three weeks on a machine. So she’s tired and frustrated. A couple of times she pointed to herself and mouthed “stupid”. Somehow she figures that this was all her fault. I suspect that the road ahead of her is a tough one and she will be tired and frustrated throughout, but each day she is getting stronger. It will be a momentous event when she finally is transferred out of the ICU.
The past three days have been very significant in my sister-in-law’s progress. Although unable to speak she has managed to be very expressive! Remember the song Bette Davis Eyes – well that’s her. Facial expressions, nodding and shaking her head, moving her arms and using her eyes – it’s all happening.
She’s put together back-to-back “good” days and the doctors are very pleased with her progress. I have to laugh, when things aren’t looking so good you see the doctor pretty much only on rounds. When a patient is starting to come along, perhaps better than anticipated, everyone wants a piece. When I arrived for a visit on Monday she had two doctors in checking on her, and not on rounds. Let’s face it, everyone loves a good news story. I tend to think that is what is happening here. My sister-in-law has turned a corner and her determination and will is starting to show. Once they remove the tracheostomy she will have her voice back and then things will really start to happen fast. The fact that she was remarkably healthy in her lifestyle and physical activity has probably been the biggest boon to her progress. Hopefully any future setbacks are minor in nature and she can get on with the serious business of healing.
My sister-in-law remains in the ICU. It is two weeks today. Yesterday they performed a tracheostomy. All went well in that regard. I was able to see her about 2 hours after the procedure and she looked far more comfortable.
The doctor continues to reduce my sister-in-law’s level of sedation and yesterday it was evident that she was far more wakeful. Her eyes would open, she would raise her arms, she showed a lot of facial expression (frowned quite a bit) and tried to talk. She continues to dispel the excess fluid from her body and the medical staff was pleased with her progress yesterday. Today, again, the staff say she is progressing well, she had a good night and there had been no evidence of any temperature. Her sons have been in today and also feel fairly positive about the events of the past 24 hours.
All in all a very satisfactory report.
Today will be an exhausting day for my sister-in-law. They plan on removing the intubation and inserting a tracheostomy. Although this sounds quite invasive, the trach will likely be relief for her throat. She’s had the tube in for almost two weeks and it must have rubbed her throat quite raw. The positioning of the trach is much lower and therefore less likely to irritate. When I visited yesterday I got the sense that my sister-in-law is ready to move forward. Although she is still sedated and semi-conscious I got the feeling that she was registering everything and also that she was quite frustrated, I actually told my husband that she seems pissed off, she’s had enough and you can tell. It must be awful to be so powerless, semi-aware of what is going on around you relating to your body, but unable to have any say in it. Just wait until she has her voice back.
I suspect that removing the intubation will be a good thing. It will mean less apparatus around her head and also allow for better communication. A trach has less likelihood of infection – or so they tell us, which is another good thing. Her sons are at the hospital with her now awaiting the ENT doctor who will do the tracheostomy. Apparently it is a relatively quick procedure.
It is a slow but steady process my sister-in-law is engaged in. I have been told that there will continue to be good days followed by not so good days, and this indeed has been the case. Yesterday and last night were both good, we will have to see how today’s procedure affects her but it is most likely to be quite unsettling. Good days and bad days, we are learning to roll with it.