We all had to work this morning so I called the NSCU to see how mom's night and morning were. Her nurse told me that mom was doing well but not too much difference between yesterday after the surgery and this morning. Mom was able to follow a few commands and was still sleepy. The nurse said that they hope mom will be progressing more and more as the days, and even the hours, go by.
Stuff about our health care system (or maybe just about the places we have experience with or both). The hospital mom is in is noted for its work on people with brain injuries. There is an entire center of the hospital devoted to brain injured people, such as mom for example. However.....things happen no matter where you go, or so it seems. For example, here at this reputable hospital......
-after both the spinal tap and the surgery, no surgeon came to speak to us when the procedures were completed. I had to hunt them down,.
-we were never told which waiting room to wait in following the surgery (we were in the wrong one)
-on 3 separate occasions at the hospital, I have walked into mom's cubicle to find her drenched in liquid (once she was covered in the formula from a leaky G-tube [hmm...didn't the same thing happen at both the facility AND the other hospital she was in prior????], and twice her IV leaked all over her). On 2 of these occasions, the nurses were so busy, I just changed mom's gown myself.
-No one is around EVER to consult with us...to let us know who assessed her or when or what the results of the consults were.... If we are not there at the time, we learn nothing because no one has the answers.
-Assessments are done verbally and quickly with mom---no processing time allotted given her head injury (the stroke)
-we never met the anesthesiologist before the surgery
These are the highlights. I write them, not to complain or put down any of the surgeons, nurses, aides...at the hospital, nor to criticize the outstanding work they do, but to point out the fact that no matter where you are...there is always a certain level of care that underlies the greater issues involved. What can be learned? Advocate. Make yourself available as much as you are able. Understand that, in these times of budgetary cut backs, understaffing runs rampant sometimes. Realize that sometimes a surgical job well done is the issue to hone in on and not the fact that a patient is a whole being who includes a caring, anxious family. Pick the meat from the bones and don't throw out the baby with the bathwater. Stuff happens. And it happens everywhere!!! So why have I voiced and continue to voice complaints in the past and present, to be heard so that hopefully, someone else can learn or glean from our experience and most of all so that hopefully things that currently exist can change. Though we realize nothing is perfect, we can't ever let that hinder us from searching for perfection. Exist in the balance.
The quest to find a facility.... There is much to consider.
-The opinions of every family member counts
-Each family member is responsible for stating their opinions and advocating strongly about the issues he/she feels are important to the well being of the member who is a patient
-Each family member is responsible to carry out, on their own at times, the issues and tasks that need to be done and not expect another family member to carry out their wishes for them
-Each family member needs to look at him/herself in the end and know that he/she did the best they could possibly do for their loved one given the circumstances in their own lives
AT THIS POINT IN MOM'S RECOVERY --- she is NOT able to follow a command and is on a vent. The vent greatly limits our options in reference to available facilities to place mom (only 2 facilities in our county and 5 in the other close county...we could go to the city but not much there either).
-Goal #1 is to get mom off the vent (then she can go anywhere)
- Goal #2 is to get mom to consistently follow commands (no following commands but off a vent still equals no therapies---physical, occupational, speech). Just because mom is of the vent, doesn't mean mom automatically gets therapies.
At this point in mom's recovery, given her above circumstances, her recovery depends on US...her family. WE have to work on her therapeutically---physically, occupationally, linguistically and cognitively. WE, her family, need to be present. This affects the location of the facility. If the facility is too far, some family members will not be able to come to work with mom as often as we do now. As long as mom can't follow a command, or is not able to have the stamina to withstand 6-8 hours of therapy, she will not qualify for aggressive rehabilitation.
-if we put mom in a new facility, emotionally this would give us perhaps a new sense of hope-we would look at a new facility like a new beginning, starting over with new people
-The negative side to a new facility is that there is no familiarity. The people in the current facility mom is in know us and mom, we have freedom to bring our tools to work with mom there, we have established boundaries there both for us and the people who work in the facility, we can visit 24 hours a day, we know who and what we are up against in the current facility and how to negotiate their system. A new facility could be much better or much worse...there is the element of the unknown.
-The patient to nurse (RN and LPN) at the current facility is greater than elsewhere (including the aides
-If we have 4 people in a room (one facility we like has this set up), then the environment will be noisy and distracting in reference to working with mom. A person recovering from a stroke needs no distractions in order to concentrate.
-If we change facilities, mom will have a new hospital to have scans done
-If we change facilities, mom will have a new neurologist (we love the neurologist she has now)
Mom's day was a sleepy one, unfortunately. Anthony saw mom today and mom slept the whole time. Even when he tried to open her eyes, she was totally out of it and sleepy. The respiratory therapists said mom's numbers look good. Mom will be moved, hopefully, to the RCU any time now to be worked on for aggressive vent weaning. Every time mom is taken totally off the vent---every day since she arrived at the hospital, she is not able to breathe on her own. Right now, mom is breathing mostly on her own with a little back-up from the vent. Mom is grimacing alot but not waking up.
The resident told dad, Aunt Carol and I that mom hasn't been coughing since the shunt is in, and hasn't had any secretions since the shunt is in (during suctioning). The CAT Scan looked good and the ventricles of the brain are beginning to shrink slightly which is good because it means there is less fluid on the brain. I had the impression that they were hoping for more shrinkage than what they saw so far. I asked if the ventricles can shrink more and was told yes which would be good. The resident had hoped to release mom on Thursday when she finished both of her antibiotics but mom is not progressing as quickly as they would like and have hoped. She is progressing and followed some commands, but not at the spend he hoped she would.. The resident said mom's sleepiness could be due to the trauma on the brain from the surgery and due to the anesthesia as well. She smiled broadly when she saw Aunt Carol. She smiled as we spoke to her but you could see that she had a hard time keeping her eyes open. She was fighting to keep them open. She also finished a line of a silly song again and smiled. She grimaced a lot on and off too as she slept. Frequently, mom would lift her head off the pillow which is good. The nurse said that the sleepiness is typical sometimes and that she did follow some commands earlier in the day. The resident said that they had hoped and expected to see a dramatic change in her affect based on the difference in her after the spinal tap but that it could take time. The resident said that mom will be here at the hospital a while longer since she isn’t as alert as they had expected. We were told that mom is breathing very well with minimal support from the vent when needed. Otherwise, she is breathing on the CPAP mode of the vent. They plan to change her trach cuff in the near future. She will be moved to the RCU (respiratory care unit) any time now—there are no empty beds yet. The resident didn’t think that she would be released to leave any time too soon (not Thursday). They plan to aggressively get her off the vent in the next few days. But I know her level of alertness affects her ability to breathe on her own. I have to remember to bring in the boots/splints that she had at the facility because she hasn’t had them in a week now. The Occupational Therapist asked for the boots last week and I forgot to bring them in! I sent myself a voice message to do so.
Dad, Aunt Carol and I also visited 2 of the facilities we saw the other day along with another new facility. The facility we loved best, with the homey feeling, didn't feel so homey today. I still liked it, but I definitely didn't have the same feeling I had on Sunday. The was no respiratory therapist on duty to talk to us even though it was only 3:30 p.m. Mom will NOT get any therapies at any of the facilities we visited unless she is able to participate on her own. One facility boasted about their vent weaning success rate and at another facility, the respiratory therapist spoke to us (the bigger of the nicer facilities we saw Sunday...not the Willowbrook one!) and told us that after a woman was on a vent for 2 years, she was finally able to be weaned off. We were told similar stories where mom is now too before she went there. None of the facilities have respiratory therapists on duty from 11 p.m. to 7 a.m. --- only RNs who had training in vent care. At one point, Aunt Carol commented that the place mom was previously seems to be not so bad in light of what we saw today (and these were all places to add to the list of possibilities). In the end, I have come to the realization: Know that we live in an imperfect world, but knowledge of that should not hinder us from seeking excellence. It's a difficult decision to make. It is mind boggling.
"Having done all...Stand." Ephesians 6:13
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