Long Term Phase
Congratulations, you have made it through the most critical phase. Splurge a little; treat yourself to that two-day-old piece of cake in the hospital cafeteria. Seriously, take a few minutes to be thankful and then get ready for more hard work. As you move out of ICU and onto the general floor it is because your patient is more stable. But at the same time, you will need to make up the difference in the reduction of around the clock attention your patient receives now that they are moving to a less acute setting.
Below are the next steps that may await you.
Neuro ICU and the Neuro Floor
We won’t go into much detail regarding the Neuro-ICU separately since it is a relatively short stay and pretty much a continuation of the ICU status you have had. The nurses watch the patients to make sure they are acclimating to the increased stimuli they are receiving and remain stable enough to progress to the floor. You may notice a difference in the visiting hours but for our purposes here we will lump the Neuro-ICU and on the Neuro floor together. Below are things to watch for:
Watch for Errors
According to recent reports, many of the medical mistakes reported are caused by human error. You need to be the last line of defense to try to catch these errors for your loved one. The hospital staffing shortage is real. Nurses are overworked and sometimes nurses are pulled from one floor to cover a gap on another floor they may not be familiar with.
It is hard for hospitals and facilities to keep enough nursing aides. Doctors work long hours and their handwriting really can be bad. Residents still work extremely long shifts. Any of these factors can lead to a caring, dedicated but overworked staff member making a mistake.
Question everything… Know what medications your patient is receiving and when. Question the nurse every time as to what they are getting ready to give. If something does not look right, speak up, and speak up before they administer it. If there are special considerations have the nurses post signs in the room if necessary.
Infections
Make sure everyone continues to practice good hygiene and washes their hands every time they enter the room. Keep an eye out for the early signs of an infection such as the temperature trending up. As the head of our trauma team told us, the hospital is not a very good place to be if you are trying not to get sick.
Therapy
Make sure the therapy gets started as soon as possible. It may start as just some range of motion exercises but the sooner, and more, the better. The patient can get up in a cardiac chair even while on a ventilator. Another thing to watch for is drop foot. The therapists can use braces and splints to try to help control it before it gets too severe. It is much easier to address earlier rather than later. Make sure the therapy stays aggressive.
Neuro Storms
The concept of neuro storms seems to be in debate in the medical community. Neuro storms were described to us as excess activity in the brain resulting in a “storm” of electrical activity. This storm then interferes with the brain’s autonomic functions. Other doctors told us there is no such thing. Here is a link to an article that describes a similar notion that it calls Autonomic Dysfunction Syndrome and relates it to problems with the hypothalamus caused by brain injury: http://www.emedicine.com/pmr/topic108.htm.
While I certainly cannot argue the point from a clinical point of view, I can say that I have seen patients who exhibited symptoms that some doctors describe as neuro storms. It is a very anxious time to watch as your loved one’s heart rate soars to 150+, their temperature spikes to the point where a cooling blanket is used to try to bring it down, and there is severe posturing. Call it what you want, it scares the heck out of you.
What to Expect
One Step Forward, One Step Back
When our daughter was injured it happened that my wife was out shopping with some other family members and she and the others arrived at the ER at the same time as I did. Our group was met by a chaplain and escorted to a room away from the general waiting area. There we were told we could call any other family members. At the time, we thought it was a nice gesture and just happenstance that the chaplain had met us.
Now we know that it was actually part of the plan the hospital had in place. It seems that the seriousness of our daughter’s injuries had set their plan in motion. The chaplain provided comfort, an interface with the medical staff and along with the extra privacy and some extra care and attention. It was very welcome and very helpful.
Prognosis More Defined, Sort Of...
The severity of the injury will start to become better known as more time passes after the injury. Some patients may start to progress more rapidly and emerge from their semi-conscious state. Others will not show much progress. So if you are one of the lucky ones whose patient seems to be recovering quickly, thank God. But now, start to pay close attention to the smaller things such as memory deficiencies or other cognitive or emotional impairments. Speak with the neuro-psychologist and your medical team about anything you see out of the ordinary. The neuro-psychologist may also want to do some testing.
If your patient is not so lucky and is not showing much improvement yet, don’t despair. As a neurosurgeon explained to us, the doctors can tell from the MRIs and CT’s where the damage is, but they can not tell how much of the damaged area’s previous activity will be taken over by other parts of the brain. Some patients who have looked worse than others at this stage have ended up doing better in the long run. Remember, each brain injury is unique so comparisons are very difficult.
I think the question you really want answered is “Is my loved one going to recover completely?” In our opinion, the only way to approach the situation is for you to assume, and plan, and believe that your loved one is going to fully recover. If you go in with that mindset then you will continue to do everything possible to try to help them recover no matter how long it takes. Then, if they don’t get all of their capabilities back at least you can sleep at night knowing you tried. So far, we have not found a negative of this approach.
Tips From One Family to Another
Ask Lots of Questions
Continue to ask lots of questions. Not only about the current status, but in an attempt to prepare yourself for leaving the hospital. Watch and learn the techniques the nurses and therapists use in caring for your loved one. There are tricks and techniques they use that can help when you go home. We have found that they are always happy to train the family members and supervise as you practice.
Also, now that you are thinking a little more clearly, ask the neurosurgeon, or one of their residents, to schedule some time to sit down and review the CTs and MRIs and explain things to you in detail.
Use the Hospital's Case Manager or Social Worker
Hospitals have staff dedicated to helping in this terrible situation. They may have a case manager or social worker who helps coordinate the care of your loved one. These folks are great resources for helping you manage through the numerous decisions and choices you have to make.
Monitor the Hygiene/Turning
Nurses Aides may be called different titles based on the facility but these folks often do most of the changes for incontinent patients and also do the turning for patients who are not active. Make sure the aides do the turning on schedule and change the Depends when necessary. Check to make sure they are doing a thorough job in regards to hygiene.
After a few times where the aides did not get our daughter clean enough after changing her, my wife started staying in the room to help and then later often did the changing herself. Any deficiencies in these tasks can lead to problems with sores or infections.
Alternative Medicine, Healing Touch, Prayer
Some hospitals are more open than others to alternative medicines. Our advice is to be open and be willing to try it. We have found some very good success with things that some of our medical team scoffed at. We personally have tried Healing Touch, Reiki, massage, acupuncture, and lots of prayers.
Take Care of the Other Family Members
Again, as hectic as everything is, make sure you take time for the rest of your family. Children will need extra attention right now and hopefully, you have some other family members that can pitch in and help give the needed attention.
An example for us was that our son had just got his driver’s license and was chomping at the bit for a used car at the same time we were in the hospital with our daughter.
The thought of putting another one of our kids in a car was more than we could deal with at the time. Thank goodness my childhood friend and now my brother-in-law, was there and he took charge of the car shopping with my son getting him away from the hospital and spending some time focused on him.