Guiding care

Wednesday, March 14, 2012
Please forgive the lack of talent I'm using to write this post, not from my phone because I lost it in last nights chaos but, from my tablet.

Sure, it sucks to have to buy a new phone. I'm more mad at myself though for losing it because of the pictures and videos of my son I can't recover. *sigh*

Moving right along...

Saturday my husband and I were planning to paint our bedroom at the new place our family is renting. Of course it would be ill advised to paint while trying to wrangle an infant-toddler hybrid (what do you call the phase between infancy and toddler-hood? I mean... technically he IS toddling right?). So Turtle-Love went off to spend the day at Grandpa and Grandma's house. He had a blast! They played outside, they played peek-a-boo, they played with toys, he got to run around to his hearts content and he got to eat some of his favorite foods - tomato soup, peaches, and puffs. Not necessarily together or separate...

The past couple days Turtle-Love has been congested. He also has two teeth coming in. Just before his Grandma picked him up for their day together I noticed his eye was a little pink. I thought he or I had poked it, and I pointed it out to her and asked her to keep an eye on it. (hah) I also let her know he was a little congested, and that he had a small cough.

The day went by fairly well. My husband and I were able to get the walls of our bedroom painted, even though it took us much longer than anticipated. We finished up around 8:30 and I left to go pick up Turtle-Love. Toad stayed home to clean the (old) house up a bit. When I got to my dad's house Turtle-Love was sleeping peacefully in a pack n play they have. I was shocked! We bed share with Turtle-Love so the only time he sleeps alone is if I nurse him to sleep on the floor so that I can get a few things done while he naps. Getting him in to a pack n play is a huge accomplishment for anyone! My step mom had managed to get him to nap in it earlier in the day as well for about an hour. I spent some time with them while Turtle-Love slept, as I wasn't in a particular hurry to get home. I was just about to go move the car seat back to my car when Turtle-Love woke up. Within moments of him waking up he spiked a very noticeable fever and began to shiver. I decided I wanted to take him to the hospital. (Not the doctor's office because it was too late in the day) His temperature was 102.4, which it self isn't scary but I knew something was wrong.

I had wanted to take Turtle-Love to the hospital where we live. There are actually two, the one he was born at and the one he spent his days in the NICU in. I wasn't sure yet which I wanted to take him to, but I did want to get him 'home' for our hospital trip. I quickly packed our things into my car and moved his car seat over. In the short amount of time it took me to do that Turtle-Love got significantly worse. When I came back in it sounded like he was struggling, though I couldn't quite tell with what. Before he had been making sounds of discomfort which I chalked up to the fever. This grunting sound was similar to the sound he makes to eliminate but was much shorter and repeated. I noticed his breaths were short. At their suggestion, my dad followed in their car while my step mom drove my car so I could sit in the back seat with Turtle-Love to keep him calm.

We were going to drive back to my town, but almost immediately after getting in the car I changed my mind and asked them to take us to the hospital where they live. When I was taking his temperature earlier I attempted to nurse Turtle-Love, since he hadn't nursed since he left me that afternoon around 1. It was odd for him not to want to nurse immediately after waking up, especially if he hadn't been around me for a couple hours, so when he didn't ask I was concerned. He tried to latch and wanted to nurse while taking his temperature but it seemed like he was unable to. I tried again to nurse him in the car* to calm him down, since he seemed uncomfortable and very tired. He was not able to stay latched again. Something had to be really wrong for my baby to not nurse.

*NOTE: I regularly nurse my son in our car. He remains properly belted into his car seat and I lean over the side of the seat to nurse him.

When we got to the hospital Turtle-Love was fussing, still grunting and struggling, and you could tell his fever had gone up. Triage took our name and what we were in for and we began the waiting game. My father held Turtle-Love while we waited. If anyone in the world other than my boobies has the power to settle Turtle-Love almost immediately it is him. They must have some kind of Zen connection or something that I cannot explain. Turtle-Love went to sleep, and I use that term loosely because I'm not really sure that he was asleep. He could have just been that exhausted he kept his eyes shut because he didn't really seem to be resting. He was having trouble keeping them open before we left the house.

Eventually we got called back so they could take his vitals. His temp was up to 40 Celsius (104 Fahrenheit), his heart rate was up in the 200's and his oxygen level was on the low side of normal at 91%. If you are new around here, I should mention Turtle-Love was born 5 weeks early with RDS (Respiratory Distress Syndrome) and spent 12 days in the NICU battling his prematurity to over come his young lungs. To see his oxygen levels were down was scary. The Triage nurse gave him a dose of Tylenol and said they hoped to have a room for him quickly.

It wasn't too long after we got back to the waiting room that we were called back with a room for Turtle-Love in the Emergency Department. The nurse asked us a series of questions and the doctor was in sooner than I had expected. He listened to Turtle-Love's lungs and heard crackling and wheezing on both sides. He wanted to do swabs for RSV and influenza, as well as get chest x-rays to check for Pneumonia and RSV. I agreed to the tests and the x-rays, they seemed to be the proper courses of action to get Turtle-Love diagnosed quickly. The doctor wanted to give him Tylenol or Motrin, and wanted to start him on fluids. I told him I'd like to try to get him to nurse before giving him an IV, to which he agreed, and I replied he had already received some Tylenol at Triage, 140 mg as it stated on his chart. The doctor then wanted to give him Motrin. I was a little puzzled since he had just received the Tylenol maybe not even an hour before. Obviously this must be a standard practice, but I hadn't heard of it nor did I know Tylenol and Motrin were able to be given simultaneously but I learn new things everyday. I told the doctor I would like to have his temperature taken before he was given a second dose of fever reducers. (According to my step mother I hadn't said this in the best tone of voice and sounded confrontational.)

The doctor went off on me. He raised his voice with a statement about how if I continued to 'Guide' my son's care he wouldn't be able to do his job and get Turtle-Love taken care of, and it would create problems.


I was shocked and put on the defensive and could not get my thoughts out clearly. I tried to explain to him that I was concerned about Turtle-Love receiving double the necessary medicine, and that he doesn't normally receive any Tylenol. Only once has he had it, and he had never received Motrin. The doctor retorted that he probably never had low oxygen levels and a high heart rate either and then stormed out of the room.

Guess he wasn't listening to the part where I told him Turtle-Love spent nearly 2 weeks in the NICU with RDS then. Not the point though.

I took a couple deep breaths and sat on the cot with Turtle-Love to nurse him. We were just getting situated when the doctor busted back into the room and with his voice raised with an obvious irritation, asked me if given my son's heart rate and oxygen levels they could administer a breathing treatment.

Had he walked in the door calmly, I would have asked a couple questions:
1. Like oxygen? Or a steroid?
2. Is there a reason you think we should give him a breathing treatment prior to his chest x-ray? Is he in immediate danger?
However, I didn't get the chance to ask those questions. I was so shocked by his tone and incivility that the only response I squeaked out was an honest "Wait, what? ...I... don't understand". He huffed and stormed right back out without another word.

The nurse was frank, in a nice way, with me. She agreed with me about taking his temperature at least out of curiosity for how the Tylenol did. He was still up, at 102.9, so I agreed to the Motrin.

That wasn't so difficult, now was it, doc.

She suggested hooking him up to the pulse ox monitor since there was talk of possible breathing treatments. That way we could see how he was doing and keep an eye on his heart rate and oxygen levels. If you don't know what a pulse ox monitor is, I can describe it as a band aid with a red light attached to a cord. I consider that to be relatively invasive, and while it can be a pain-in-the-butt, it is not actually painful in the slightest. Even the sticky stuff doesn't hurt to peel off. The nurse administered both swab tests after my expressed agreement to them, and set up Turtle-Love's x-ray appointment. The x-ray tech came quickly, and was very sweet. He requested two adults come to help position Turtle-Love for the x-rays and escorted us down the hall. Turtle-Love had two x-rays done pretty quickly. We had to help extend his arms away from his chest for a clear picture from the front, and then from the side. The x-ray tech even asked if I remembered to grab Turtle-Love's amber necklace, which we had to remove for the x-ray.

I nursed Turtle-Love when we got back to the room and after just a few minutes he was a completely different baby. He was giggling and playing and amazing the nurses that could see in our room with his ability to do the hands for pat-a-cake and itsy bitsy spider by himself while I sang the tunes. His color returned to his normal pink tint rather than the hot red he had been wearing for a couple hours.

The doctor came in then with a completely different attitude. All of a sudden he was Mary-Freaking-Sunshine. No RSV or Pneumonia for Turtle-Love. His heart rate was in the 160s and his oxygen level was up to 95%. He provided a diagnosis of Bronchiolitis/Restricted Airways and possible pink eye. He explained it was similar to Asthma and probably flared do to an infection which the fever was fighting. By the way, he mentioned how some people believe that fevers are the body's way of naturally fighting infection so while we wanted to bring it down since it was high and causing his shortness of breath, we didn't want to eliminate it completely.

Well, yeah. So why were you fighting me on wanting his temperature taken?

He said that he could write us a prescription for a nebulizer for home and arrange to have it delivered in the morning to administer steroid breathing treatments if we wanted. I asked him if that was what he was recommending. He said no, that it was an option if I was worried about him, but that he thought he would be fine as long as we kept his fever down and knew what to look for if his breathing became labored again.

*eye roll*

We were discharged and headed home. At some point between leaving the hospital and getting back to my dad's house I lost my phone. I either dropped it on the way out, or left it on top of my car while searching for my keys.

*sad face* All those pictures and videos, including the only picture we took while we were at the hospital. Which I thought to snap, since it was his first trip to the hospital since being born. You know, for the baby book.

Turtle-Love is still coughing, congested/runny nose, has discharge from his eyes, and a fever. Well, the fever is on and off. I took him to his regular pediatrician on Monday for a follow up. He said his lungs were clear but to come back today if he wasn't better. I'll be calling to see what they recommend. He also prescribed some eye drops in case the eye thing is bacterial, however I'm not comfortable wit the possible side effects so we are treating it with breast milk several times a day to see if it improves. If not then we will begin the prescribed eye drops tomorrow. So far his eyes are producing much less discharge, and are only slightly tinted pink. I'll re-asses when I get home from work, prior to calling the doctor's office.

I mainly wanted to write this blog post because of the statement from the ER doctor about guiding care.

As Turtle-Love's mother, is it not my job to guide his care? Am I not responsible for asking all the questions, providing all the information, and assessing the possible outcomes and causes with the doctors and nurses caring for my son? It is certainly my job to make decisions about what care he receives. Is that not guiding his care?

I believe it is our job as parents, and care givers, to gain as much knowledge as possible regarding the illness affecting and treatment for our children. We must make educated decisions based on the information provided to us. If you don't ask questions, the right questions, you will not receive knowledge lending answers to aid you. Of course, you should also keep in mind that one source does not provide well rounded knowledge. Just as there are three sides to a story (yours, mine, and the outside perception) there should be as many resources you go to for knowledge on any topic.

We avoided a round of steroid breathing treatments that we can certainly say were unnecessary to that particular situation, because we asked questions and did not immediately agree to treatment. That is not to say that you should not immediately agree to treatment - what I am saying is you should absolutely seek the knowledge to make informed decisions, so that you can aid in guiding care for your child(ren).

Note: I want to add these are what I recall to be the incident we faced at the hospital. These are also my own opinions. I am NOT a doctor. I've never taken a medical course in my life. (Well, I did get CPR certified in high school, and to get discharged from the NICU we had to take a class on infant, toddler, and child CPR and choking procedure.) I do, however, enjoy gaining knowledge on almost any topic - especially those that concern the well being of my child.


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