I joke a lot with people about having full time nursing, and in a lot of ways there are many conveniences to having a nurse around. It’s like a live in nanny. And I think sometimes people do get a little jealous of the perceived ease that nursing brings.

But I can tell you right now, it is not worth the trade off.

For starters, our house is not big enough for a “live in nanny”. Matt and I have almost no privacy when the nurse is in our house (we do have some family hours, two a day). And there really is no getting around that. Even if we did have a big house, our privacy would be limited. Matt and I love spending time with Emerson so we are never far away.

Aside from privacy, there is always the awkwardness of who is “in charge”. Oh sure, we are always reassured that Matt and I can do whatever we want. But we still have to ask or tell in order for us to do it. It is unbelievably difficult to have to ask someone if I can hold my child. There have been a few times when I went to pick up my fussing son only to be cock-blocked by the nurse. And it just tears me up when that happens.

Not to mention the emotional stress Matt and I are constantly under. And I really don’t want to get into that, way too personal and hard to manage.

We always have to evaluate every decision we make before we make it (not because we have nurses, but because our son is sick which is WHY we have nurses). Do we take Emerson here? Do we all stay home? Can we have guests over? It means remembering when he received his last IVIG and calling siblings to make sure no one is sick and checking the weather to make sure we can even take him outside. And then it is a matter of worth: is the amount of work it takes to get Emerson from our house to the car then from the car to the destination and back again, worth the amount of time we will spend at the destination.

There is also the appointment side. Having home nursing means you go to the doctor frequently or, if you don’t go, you have frequent contact. So how do you coordinate that with your job and how do you maximize the doctor visits while minimizing the number of times you physically go to the hospital to see them. And how do I coordinate this while I am at work full time?

So while there are definitely perks and while I recognize that *mostly* people are joking about being envious of our nursing staff, I would change it all in a heart beat to have normal baby moments. I would get up every night for 18 years if it meant Emerson was healthy, but there aren’t trade offs to be made.

Live is not a choice between two “would you rather’s”. You cannot wish on a star to get what you want. And you cannot negotiate out of reality. I love my life and my son. I would not trade one single thing about either. But my life is hard, contrary to full time nursing. Matt and I chose not to focus on the “hard” parts and we have more than our fair share of happiness. Our life is filled with love and laughter and pure joy. With life, we are intense.


elemental what now?

Having a chronically sick child is… well it is a lot of things. It is doctor visits and phone calls. It is late night and early morning vigils. It is constant lists of things to do. It is meeting more people than you can remember. It is learning a whole new language. It is navigating an unfriendly system. It is keeping track of doctor appointments and medicines. And so so much more. 

Recently, I have learned more about pharmacy. It is a whole world that I really know nothing about. The last month, since moving out of the safety and comfort of my parent’s basement and into the great wide world, I have been engaged in an epic battle of wills…often coming out the loser. 

One of Emerson’s medicines was due for a new prescription. Each script gets a three month life because they change so frequently and it ensures the doctors continue to evaluate his medications. So this medicine changed in the last three months and we were fine on volume due to frequent hospitalizations. However, once we moved, we changed pharmacy’s and we need a new prescription. Also we were out of our “back up” supply.

Easy enough fix, right?

Absolutely not. For starters, the doctor who originally prescribed the medicine no longer wanted to the prescribing doctors on Emerson’s medications since Emerson was mostly an outpatient. Fine. We called up our primary (who we see through Children’s) and she told us she did not want her name on this medicine either. (which really got me thinking, what the heck are we giving him and WHY if doctors do not want to prescribe it! enter So she told us to call another of Emerson’s doctors for the prescription. I was getting a sneaking suspicion that we were getting the run around.

Fine, we called the other doctor. She writes the new prescription and faxes it on over to our pharmacy. wham, bam, we have a bottle of medicine waiting for us in a few days. Excellent. So Matt and I meander on over and pick it up.

We thought the issue was put to rest. Imagine our surprise when a few weeks later our month prescription was gone (gasp) and our insurance would not cover a new bottle for a few more weeks. yikes. 

Thus ensues the fun. 

Since leaving the nest for the great wide world, the Truebloods transferred Walgreens Pharmacies — from Coon Rapids to Fridley. We went from great service with no hitches to the pharmacist from hell. She is….something that’s for sure. And, due mostly to my ignorance of medicine, I had not way to combat her. She kept insisting she was following the prescription, but we ran out of medicine. I had endocrine fax over another copy of the script and went to pick it up today.

I verified with her that everything was good. She confirmed, but it didn’t seem right to me. Either we were giving Emerson three times more of the medicine (which would have had obvious effects) or the pharmacist did not give us the correct amount of medicine. So I hoofed it back to the hospital (Emerson is here for a tune up) and had the floor pharmacist look at it. 

Turns out, Walgreens was wrong. She was not using elemental medicine. Okay now we are getting to the part I don’t understand. Here is what i gathered, elemental of this med is 100/1mL and we were using a 250/1mL. don’t ask me what this means. Apparently the second is more diluted, not as pure which means we need more.volume to get the correct dose that Emerson is on. The pharmacist explained all this to me and most of it went over my head, but I asked him to call our pharmacy and clarify. 

And even he had problems talking to this lady. She was very defensive and hostile even when our Champion agreed that we were wrong (apparently, the endocrinologist did not specify that the med was based on elemental measurements). He finished up his phone call and told me I could go pick it up later today (that won’t be happening since Emerson is in the hospital he doesn’t need it and I don’t really want to deal with this pharmacist again). I won’t lie. I am a little afraid of this pharmacist. 

I am even a little more intimidated after the phone call between pharmacists because our Champion suggested we changed pharmacists. After one phone call with this lady he knew we needed to get out of there. 

Thus ends the struggle of my last two weeks… or so I hope. I honestly do not know if now, finally, Walgreens will have the correct medicine for us. 

Needless to say, Matt and I are in the process of finding a new pharmacy. I am also interested in learning a little more about compounds and Emerson’s medications. I need to be more informed.