Sometimes I Hate Holland

There's a poem out there that compares being a special needs parent to taking a trip to Holland when the traveler really wanted to go to Italy. The crux of the message is that Italy is great, but Holland is nice, too, in its own way.

While there are parts of the poem that I can identify with, the reality is that in addition to all of the nice things that Holland has to offer, like tulips and Rembrandts, there are some ugly things in Holland, too, like drugs and prostitution.

Today, I seem to be wandering in the red light district. Allow me to explain.

Claire has had a rough morning. She keeps rolling her eyes back and groaning in pain - the exact same thing she was doing in the hospital for most of her week-long stay last week. We are not sure what is causing the pain, but here is what we know:

1. She did not have these episodes before we started ACTH (which we are currently weaning).


2. When she had these episodes in the hospital, her vitals remained stable.


3. We just wrapped up a week-long stay in the hospital and left with the same problems we came in for (constipation, pain).


4. Claire is not constipated - she had 4 dirty diapers last night.

Claire's physical therapist came over this morning for her regularly scheduled appointment, and upon seeing how bad Claire appeared to feel, suggested that we call her pediatrician and potentially take her to the ER. She put a pulse-ox on Claire and her vitals looked fine (Sats in the 99-100 range, heartrate of 140.)

We called the pediatrician who said there was nothing she could do for Claire in her office and instructed us to take her to the ER if we were concerned.

We are hestitant to do so, however, for the following reasons:

1. We just wrapped up a week-long hospital stay where we left with the same issues we came in for. (See #3 above.)


2. We lose control when we go to the hospital. We can't give Claire her meds when we want to, but instead have to wait for them to come up from Pharmacy.


3. If we take Claire to the ER, a doctor who can't even pronounce Hydrocephalus and who has never heard of ACTH will want to check her shunt, even though she just had it checked a week and a half ago.


4. If we take Claire to the ER, they are going to want to run a basic metabolic panel (BMP), which requires her to give blood. She just had a BMP run yesterday, and her veins are still healing from the many sticks she had to endure during her hospital stay last week. (They are black and blue and purple and green.)


5. The nurse attending to Claire will always insist on sticking her first before calling the IV team, even though we've learned that Claire is a hard stick and even though we will specifically ask the nurse just to let the IV team do it (we even know the names of the IV team members who have been successful in sticking Claire in the past). This nurse will fail and will then call the IV team, subjecting Claire to an unnecessary stick.


6. Claire's vitals look fine, so she does not appear to be in in any immediate distress.


7. We are pretty sure that Claire's behavior is pain-related and likely linked to ACTH, and we think we may be able to manage the pain at home.

In light of the above, we have decided just to "wait-and-see." We are going to give her some pain medication and reassess this afternoon. If she gets better, we will do a happy dance. If she gets worse, Brad will take her in. If she is about the same, we will figure out whether there is anything else we should do before we take her in.

The rub of this situation is that in the midst of our decision-making we have to worry about what others think. You see, we interact with many mandated reporters, all of whom are legally obligated to report parents who fail to protect their children from imminent harm. I never thought I'd be a person skeptical of "the system," but all of a sudden I find myself worrying when Brad and I make a decision that is different from one that someone else recommends.

Brad and I love Claire so much and would never want anything bad to happen to her, which is why we always think about what is in Claire's best interest. Sometimes that means taking her to the hospital, sometimes it means keeping her at home. As we do this longer, we are more hesitant to blindly follow the directions of others, including doctors. We have lived this. We know Claire. We trust ourselves to make the right decisions. We hope that others trust us, too.

Yes, this is an ugly part of Holland that I wish we didn't have to visit. Now, can someone point me in the direction of the canals?