Treading Water

We’re still in the hospital, still waiting for some decisive news to allow Michelle and Zoe to return home.

Zoe had her best blood pressure yet today, 97/55, which is close enough to normal range to have the doctors talking about discharge. At the moment, we’re looking at Friday, however we are cautious about getting our hopes up.

There is evidence of Thrush, and she has a slight cough or rasp to her throat, which has us anxious that some new issue is cropping up. Cyclosporine levels are still a little high, so that continues to be something to monitor.

Hopefully we’ll know more soon, but the most important thing right now is that BP — that’s a very positive sign, regardless of whether we go home yet.

On Being an Advocate

ad·vo·cate: one that pleads the cause of another; one that supports or promotes the interests of another

The most important thing that anyone has told us during this experience was, “Be an advocate for Zoe”.

I can’t possibly state how important this idea is for someone dealing with a child (or anyone) who is ill and facing a long process toward recovery, particularly when that person cannot fully advocate for themselves. I’d like to offer a few thoughts on that for anyone who encounters this blog, just in case no one says the same thing to you when you are faced with anything like what we have been.

During our first days of confusion, fear and uncertainty, as we became aware that Zoe was in an extraordinarily fragile state and the worst could happen at any time, we really didn’t know what to do to help. The feeling of powerlessness, of helplessness, when a child is ill is very nearly overwhelming. We didn’t know what to do, how to help, or even how to get out of the way.

The night that Dr. M came in to tell us what Zoe was facing was a dark and difficult night. The next night, when we spoke again, had clearer heads and were able to gather more information, we asked what we could do, how we could be of help in getting Zoe through this. Dr. M told us that the very best thing we could do was to “be an advocate for Zoe”. I’m not sure I can say we understood what he meant then, but we do now in very concrete terms.

As the days have gone by in the hospital, there have been numerous occasions when we were confronted with moments when we weren’t sure about what was going on, and were it not for the early encouragement of some of the hospital staff we might have simply remained silent. I’m not certain we would have ever become so involved in Zoe’s treatment that we felt confident questioning and occasionally challenging the situation to ensure the best level of care were it not for those words.

Being an advocate to me means always thinking of what’s best for Zoe in each moment and each interaction with doctors, nurses, staff, and equipment. It means setting aside my own resistance to “rocking the boat” or saying to someone “what are you doing and why”. It means trying to be nice, but not so nice that we let things go unchallenged when they need to be.

I’m not suggesting that manners are out the window by any means, simply that we have to be the front line for Zoe, the strongest defense against any possible errors, mistakes or oversights, and that sometimes means being firm when we might instinctively be easygoing.

Some examples:

  • Asking what and why all the time until we understood exactly why each procedure and medication are necessary — not to challenge the expertise of the staff, but to make sure we understood so that when new staff or different staff are on, we can help keep things consistent
  • Being firm about cleanliness, requiring staff to wash after coughing (which even nurses do not always do on their own), asking volunteers and well-wishers to stay away during uncertain times
  • Asking doctors to come back and re-explain or elaborate on procedures if you don’t feel comfortable with your understanding of what’s going on
  • Asking nurses to come back later when Zoe is upset and they need a “vitals” reading, giving her time to calm down even if for a few minutes — this was particularly necessary when her BP was reaching dangerous levels and we felt we needed to intervene lest she become even more upset by the attempts to test her
  • Being firm about taking readings from the same arm for consistency, since that sort of thing isn’t consistent across nurse shifts
  • Watching what medications are administered and when
  • When concerned about something — blood pressure, temperature, or other symptom relevant to another condition — asking to have it checked more often until you feel the situation is properly monitored
  • Asking to have lines removed if they are no longer in use so as to be able to properly comfort her — there are times when IVs are left in for convenience but may not be used until the following day, for example
  • Asking to have dressings changed if you feel they might have gone too long without it
  • Asking someone to stay in the room with a child if you have to leave, even for a few minutes, so that someone is always there to comfort her

One might easily think that many of these things are done by routine, that there is not a need to remind or ask for them, and you’d be right in many cases. Where advocacy comes in is ensuring that they are always done, that the level of care is always high, no matter what else is going on.

Any good doctor or nurse should welcome questions and welcome your assistance in providing the best care. We encountered push-back from staff only one time, and it was quickly remedied when that person spoke to another person who had been on an earlier shift and confirmed what we were saying, and the treatment orders were quickly altered to reflect it as well.

Those of us who aren’t in a medical field can perhaps forget that doctors and nurses are not superhuman. Everyone is tired at times. Everyone has the potential to make a mistake. Everyone has a bad day, a bad mood, a forgetful moment, is anxious to leave at the end of a long shift.

The parent or advocate’s job is the ensure that when that moment comes, a gentle reminder or a firm request is there to keep the level of care consistent and protect your charge. You are the only one(s) that are there all the time and see everything, and you are therefore the only ones that can ensure the best and most consistent level of care for your child or loved one.

Blood Pressure Record

For reference, I charted a day or so of Zoe’s blood pressure, based mostly on Michelle’s record of her periodic BP tests. Originally I had intended this to be for us to look over rather than to publish here, but in the interest of documenting what we’re looking at, here it is.

Please note, this is just my and Michelle’s notes converted to a chart, not anything from the medical staff and shouldn’t be taken as such. Also, the “Normal” blood pressure for infants is somewhat variable, I chose a number in the normal range for reference.

Factors currently affecting her BP:

  • Cyclosporine levels, which have varied from too high to too low as the doctors work toward finding a dose that remains steady
  • Vfend potentially interacting with the cyclosporine, causing it to be difficult to properly dose
  • Time of day: when she’s asleep her BP tends to be down somewhat
  • Mood: when she’s upset, which happens fairly often during the BP cuff application, she can push it up somewhat; this is not universal though, some of her best test numbers have come when she was fussing
  • Dexamethasone levels; she’s on a reduced dose and it will be reduced again soon, but the steroid itself pushes her BP up

“You’ve Got to Have Faith”

I spent part of the morning getting Grizzly, our (now) huge pound puppy, up to date on his shots and his yearly checkup. I was reminded how often we seem to connect with people as a result of Zoe being in the hospital — it’s happened to both Michelle and I in the past few days with different circumstances, different people. It happened to me again this morning.

I was discussing Grizzly’s treatment and they were trying to encourage some treatments/medications that he really didn’t need or which we already had at home left over (ear cleaners and such), and I explained that we really didn’t want to spend money on things that weren’t absolutely necessary right now due to a child in the hospital. I left it at that.

After the Vet left, the Nurse, who Grizzly really liked and who seemed very nice, explained that she understood probably more than we could realize, but didn’t elaborate.

She continued on doing his billing run down and explaining his shots and medications, and at one point, sensing her continued interest, I explained that Zoe was 2 months old when she went in, is almost 3 months old now, and that it was likely to be a long term thing for her. She looked away, back to her computer screen in the examining room for a moment, then back to me with a much more serious look on her face. Until that point, she had been really sweet and upbeat, part of the job I’m sure, but that seemed to fade for a  moment.

She said, “You know, you have to have faith. It doesn’t have to be God, but it has to be something, you have to have faith.”

I smiled at her and she continued, “When I was little, I had Grand Mal seizures, and the doctors told me I wouldn’t live past 16, if I even lived that long. I’m here today because my mom told me that I would live. I really believe that I wouldn’t be here today if my mother hadn’t had faith in me.”

I would guess she’s around 28 now.

There is a personal barrier that being really really sick, or having a sick child, seems to cut right through. People seem to stop putting up their brave face or their happy face or work face, drop their guard, and connect to each other much more quickly. It’s easy to spend a great deal of our day to day insulated from that harsh humanity and emotion that can come from these illnesses, but I’m increasingly realizing it’s those connections that are most valuable and real; I’m not sure why we work so hard to put them aside or conceal them.

Not Yet

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.  ~Charles Dickens

We can’t go home yet. Last night was another hard night, more blood pressure scares as they tried unsuccessfully to rein in her rising hypertension. There were some moments of true fear where, when upset, Zoe’s BP rose to 180 and 190 systolic. Normal adult is around 120, normal infant… under 100.

It took the introduction of another new IV medication to bring her down, and by 2am or so she was holding steady around 124, a dramatic improvement over the past day. Today she was down to 119 or so, a reasonable number given that there is an expectation that her BP will be high due to the steroids. From what we understand from Dr. B, the longer a person is on steroids the worse the side effects become, and we’re definitely seeing that. Luckily the dosage of Dexamethasone was reduced by half, and we should start seeing some improvements. What we have seen today could be a result of that reduction.

That was the bad news. The good news is that Zoe’s kidneys seem to be functioning normally (hypertension often has renal causes from what I gather), her heart looks good, and there were no bad indicators or causes for worry on her EKG, ECG, or ultrasound tests that she’s had in the past two days.

I’ll take it.