You will receive regular updates from the bedside nurse. The amount of information that they are likely to give you depends on how well they know your child, but also their seniority. A very junior nurse will not be able to tell you as much as a senior Sister or Charge Nurse. However, that should not put you off from asking, as a junior Staff Nurse will be able to seek help from a more senior colleague if they need to.
From time to time you will also receive updates from the medical staff. This may be at the bedside for a quick update, but for more detailed discussion this will usually happen in a quiet room on the PICU. It is perfectly acceptable to ask to speak for a doctor if you are concerned or worried, or perhaps don’t understand something. However, you need to be realistic. The medical staff have a huge number of competing commitments, including emergency admissions. The bedside nurse will probably arrange a time for you to talk to the doctor, but sometimes that meeting might get delayed, because of the doctors unpredictable workload. It is undoubtedly true that as a parent you will spend a lot of time sitting on PICU waiting for information. It is not because doctors or nurses don’t want to give you that information, but that it is only one of a large number of things that they must do. As a general rule, the medical staff will seek you out if there is a serious deterioration in your child’s condition.
The bedside nurse will be at the meeting. If he or she is very junior, a more senior member of the nursing team may accompany them. Some PICUs have Family Care Nurses who are there to support you through difficult times. A member of the PICU medical team (normally a consultant) will be present, as may a doctor from the particular speciality that is overseeing your child’s care.
That is a personal matter for you. Some families like to have their extended family with them whilst others prefer just the parents to be involved. Large numbers of people at meetings can be challenging and it can become confusing the more people and opinions there are in the room. If you wish to have someone with you, perhaps choose one other person who’s opinion you value the most. Remember, as parents, it is you that are the most important people there and you will need to work with the staff to make what are sometimes very difficult decisions.
Again this is a very personal matter for you. Staff will allow this if that is what you really want. However, it will not stop staff telling you bad news and you have to be sure that your child will be able to cope with this at what is already a stressful time. If you are not sure, speak to the bedside nurse or nurse in charge before the meeting.
This of course depends on your individual circumstances. However, it is likely that you will have a fairly good idea before the meeting by what has been happening at the bedside. If doctors and nurses are worried about your child’s condition, it is very likely that you will have picked up on this.
Unfortunately, if your child is poorly enough to require treating on PICU there is a reasonable chance that, at some point, you may receive more bad news. It may be that staff are worried about scan or blood results, or that they are concerned that your child is not responding to treatment as expected. It is very important that you or someone you trust knows what is happening, as you need to be involved in decision making at every stage.
Yes, that is not a problem. Just explain to staff that you are making notes to try to help you remember things after the meeting.
Staff will encourage you to ask questions. If it helps, write them down before the meeting so that you don’t forget in the heat of the moment.
When your child is poorly, it can be very difficult to process information. You will be tired, sleep-deprived and under a huge amount of stress. Staff understand this and will do all they can to support you. It might take a number of meetings for you to fully understand what is happening to your child. If you are unsure, do ask for clarification or ask to meet again once you have had a chance to process the information you have been given?
If you really do not agree with what you are being told, it is perfectly acceptable to ask for a second opinion. This will usually come from another specialist within the same hospital. It is usually neither necessary nor realistic to seek second opinion from specialists within other hospitals. This is because they take a long time to arrange and could create delays in your child getting the right treatment. In general, if the medical staff are unsure about how they should treat a particular condition, they will automatically seek advice from a suitable expert.