Natalie was sick yesterday with some sort of a stomach bug so we weren’t able to see Ryan. She has not vomited since yesterday evening and her fever is down, but I think we should wait one more day to make sure no one (namely me!) comes down with anything. This is the longest I’ve gone without seeing him and I hate that he is there without his family to keep him company. However, I don’t want to chance him getting anything from us.
I haven’t spoken with the doctors yet this morning (they are doing their rounds), but as of yesterday Ryan was doing well on 2 liters of oxygen per minute. They switched one dose of his diuretic to PO (by mouth) yesterday with the rest IV and will take an x-ray today to see how well he is tolerating the conversion. They also added another PO diuretic to compensate for the switch from IV to PO. They will continue to slowly chip away at converting his diuretic to PO so we can bring him home.
Before this experience with Ryan, I never realized the differences between units and the differences in nurses. I just figured a nurse is a nurse. I had no idea that it matters if you are a floor* nurse or an ICU nurse or an office nurse. I never realized that nurses move into case work and educational work that takes them off the floor and into an administrative role. It is amazing all the things nurses branch into. And since my first real long-term experience was with ICU nurses, it is a major culture shock when Ryan moves to the floor.
*A floor nurse is someone who works on a basic unit such as post-surgical or postpartum as opposed to an acute unit such as an Intensive Care Unit.
In the Cardiac ICU, nurses are assigned one to two patients. They are physically with the patient their entire 12-hour shift. They are typically assigned to the same patient(s) across the three days they work. In Ryan’s case, he saw the same six or seven nurses on a regular basis. Because they spend so much time with the patient, they become extremely intimate with the patient’s mannerisms and baselines; his responses to different medications and daily bodily rhythms.
And they are expected to inform the doctors of every minute detail and end up driving the patient’s care. They advocate for more or less medication, more or less therapy, give their opinions on when to wean oxygen or vent settings. They become the patient’s voice.
What this does for the parent, especially one like me who is not able to be there 24/7, is relieve a huge emotional burden. We know there is someone looking after our child all the time. Someone who has intimate knowledge about what he needs and how he’s feeling. When I call for an update the typical CICU response is to give me the same run down they would give a doctor who stepped into the room: last gas results, what meds he is on and any wean schedule, same with oxygen or vent settings, any change to the plan that was discussed in rounds. When I say, “How is Ryan?” She knows I am asking first about his medical status and then about his emotional status and responds appropriately.
On the floor there is a stark difference in the nurse’s role. A floor nurse has four patients and is required to rotate between the rooms hooking up feeds, changing diapers, giving meds, and any other daily care is involved with that specific patient. They do not have time to get to know the patients intimately and are not expected to drive the patient’s care. The parent is expected to be the primary care giver and be available as much as possible. As you can imagine, my time constraints do not change just because Ryan is moved to the HKU so it becomes harder to imagine him happy and cared for. It is easy to worry that he is alone and upset or needing something. And in reality, this does happen far more frequently on the floor than in the ICU. It is just the nature of the beast.
When I call for an update the typical HKU response is to say, “He’s doing great.”
Then I ask questions like, “What is his oxygen setting, what are his sats, does he have a fever, what was discussed in rounds?” Sometimes they know the answer and sometimes they don’t. I’m guessing because they are pretty busy and they have patient techs (think CNA) who does most of the vitals.
Further, the way the doctors are staffed is significantly different as well. In the ICU, the doctors are on service for a month. There may be a slight learning curve at the beginning of the month but within a week they are caught up with a patient’s needs and able to make decisions regarding care with a fare amount of information. In the HKU, doctors are on service for one week so by the time the learning curve is over, there is only a few more days for them to make any sort of care changes.
For most kids, the differences between the units is a natural progression to going home. They (the medical staff) tell us moving to the HKU is a great way to practice life at home. And the typical child coming from the CICU is on their way to going home within a few days. The hard part for us is that Ryan sits in the HKU for more than a few days…. we are going into our third week and it doesn’t seem we are any closer to going home than we were when we came to the floor. (part of that is staffing inconsistencies, part long holiday weekend, part trial and error)
Speaking to a different doctor or resident every time I am updated (which is far less frequently) is hard too. I have a good rapport with the CICU doctors who I’ve worked with day in and day out for the last 10 or so months, whereas I only know one HKU doctor (who I worked with in the CICU and has now moved to the HKU). And because there seems to be lack of progress, the conversations are more confrontational and leave me feeling unsatisfied.
The point of this isn’t to bash the HKU. It is simply to give insight on the differences I’ve experienced between acute care and general care; to give insight into how our lives are different these last few weeks and how it really makes me want to take my son home. It is also to say that I’m learning to be more vocal about Ryan’s care on the unit. To question the doctors harder and keep at them until I am satisfied they aren’t deflecting the question(s). I think the perception of the CICU and HKU of Ryan’s mom (that’d be me) will be quite different as well. Perhaps as different as I view them. But that is okay. As long as my son ends up at home… soon.
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(c) 2016 Leighann Marquiss
Comments (11)
my father was in icu for a few months then back and forth between different settings, floors, nursing homes etc… he was in a coma for several months. anyway. i know what you mean.
I hope ryan continues to improve.
The NICU where Karsie lived sounds like a mix between your ICU and the floor. For the most part, Karsie had primary nurses (two during days and two during nights). But on their off days, she had most every other nurse that worked in the NICU. It was rare that a nurse would have her for more than their three day shift. Therefore, we had the great regularity of her primary nurses and then the other nurses that didn’t know Karsie at all! I hated when the primaries were not there because I couldn’t get reliable information… or they would try to sugar-coat the news as if I hadn’t been in the NICU for months and it made me so upset.
Our NICU doctors rotated through frequently as well. They would be on for seven days then off for at least five. They had different teams so they wouldn’t have the same patients for more than the seven days. And the NNP’s were a similar situation!
We often found ourselves getting VERY frustrated with the inconsistency between providers. We also learned which Dr’s would give meds and make changes and which ones wanted to keep things the same and not make changes.
I am praying for you and your sweet boy that you get to bring him home soon and be done with all this!
We know exactly what you’re talking about and I think you’ve done a good job of explaining the difference between the ICU and the floor. When we were in the hospital, our initial reaction was that the floor nurses are completely inadequate and couldn’t hack it in the ICU. In retrospect its clear that the roll of the nurses is quite different.
I can’t imagine how hard it is to be away from Ryan and I know that the holidays are making it harder for you and also for the floor as they are likely staffed a little lower this week. On the bright side, its great news that Ryan can stay so long on the floor and is an indicator that he’s closer to getting home. We’re thinking of you and hoping that one of these days you get the fateful call saying “come and get him!”
It seems my husband beat me to the punch with a response. We have had COUNTLESS conversations about floor versus ICU and its pros/cons. When Maddie was on the floor Brent and I would trade off nights in the hospital because she was so small and fragile and couldnt be left alone. We would go out for dinner and I always felt guilty for that time away. In ICU land you can go home and sleep ‘well’ knowing that he is being watched like I hawk. But you know what – THEY DONT THINK HE NEEDS THAT ANYMORE and that is amazing. ICU nurses are a rare breed of human – thank god they exist.
He’ll be home soon and then you will learn the ups/downs of yet another type of nursing – HOME NURSING 🙂 I cannot wait to hear the posts about the ups and downs of that!
Kirsten
I. Can’t wait for you to be able to bring Ryan home and am praying for that. Having just been through three floor visits with our youngest I know how much you have to be the advocate, voice, nurse and Dr. We were blessed that I have Dr’s and nurses in my family so I have some knowledge of how this all works but still it is exhausting trying to stay on top of everyone and care for you sick child and self and two other kids. Oh and there is a husband too! I am so praying for you! You are a wonderful Mom and your children are all so blessed to have you!
I am a nurse and I couldn’t agree with u more. We don’t have as much time on a general unit I have between 4-8 pt which makes it hard to bond. Dr’s change daily which makes it hard. My advice is, u are doing the right thing fight for him and u, voice ur opinion, and don’t let them ever make u feel like u are harming his care only improving the continuity and the steps forward. My fried who also has a cardiac son spent some time on the general floor and was just shocked, because she was so use to the ICU care. I told her to stay on them, and if there is a resource nurse or a charge nurse notify them of ur concerns they are the leader of the care on the floor and can usually make things happen, they also tend to learn the pt, no quit so personally, but they get updates on every pt every day.
Lindsey
Keep fighting and I hope this helps.
I’m praying that your sweet little man will be home with Mommy nurse very soon.
Happy New Year to your family.
Praying you can bring home Ryan soon.
Happy New Years
Paula from 7isheavenforus
Leighann,
The ultimate care taker is continuing to watch over Ryan, no matter the nurse or floor!
Galations 5:22-23
2 Samuel 7:28
It must be so hard to give your child…and a piece of your heart over to others. You learn to trust some, learn to question others. I think you are an excellent advocate for your son. You cannot be everywhere at once, so putting trust in others is going to be key. I can remember going through my own cancer procedures, and knowing when to “lay low” and wait for a staffing change and when to scream for help. Same with my son after he had back surgery. We learned when to complain loudly and when to wait it out for the staffing change. Sometimes it was worth the wait, other times it was extremely frustrating.
I can’t imagine how you are feeling Leighann. This is one of those times you will have to put trust in God to make sure your son is cared for properly. You cannot be expected to be split into so many pieces! You will fall apart!
*fka anonymous
I really dislike it when Sean would be on the floor. I learned early on to make it clear to the resident and the attending to clearly communicate with me or I ban them from Sean’s room. Same with the nurses. Because of this, patient care is up at our Children’s hospital and the communication is so much better. Those new residents learn very quickly with me and it helps their boss is our Pediatrician.
Best wishes for a wonderful New Year and Ryan can come home soon.
Shelly