Little Trooper

Baby E was such a trooper yesterday. DH brought her in around 3:45 a.m. to nurse, but she wasn't interested and we dozed off.

Just before 5 she decided to nurse after all. I wasn't awake enough to be cognizant about it until I woke at 5 and realized she had just finished nursing.

She wasn't supposed to have anything except clear liquids for 6 hours before her procedure, and check-in for the procedure was at 10. I hoped 6 hours before the actual procedure instead of before check-in would be all right.

DH took her back to her own bed so she wouldn't be able to nurse again while I was sleeping.

When we got up and got dressed in the morning, I noticed that the brand tag on my new blouse read "Anxiety." I briefly thought about changing my shirt, then decided that would be silly.

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We let E sleep as long as possible so she wouldn't think about breakfast. She was very fussy when she woke up, especially when she realized I wasn't going to nurse her.

Traffic was light, and we made it to JT's house 10 minutes earlier than we had planned. AJ and M&M were excited about spending the day there.

Even though we had trouble parking and then sat in the car waiting for Baby E to wake up, we got to the correct waiting room of the hospital a full 20 minutes early, at 9:40. We checked in and they said someone would be with us "very soon".

I was so glad DH was there. We took turns walking Baby E around, playing peek-a-boo, helping her color, and generally trying to distract her from thinking about the "milk" she kept requesting.

Something like 2 hours later they finally got Baby E checked in. She liked the little hospital crib and wanted to lie down in it and pretend to take a nap, but the charm of that wore off after 20 minutes or so in the cramped room. We had to wait a long time again before they prepped her for the procedure.

Apparently they had booked more patients than they had rooms. It was 12:45 by the time they finally took her back to have the endoscopy. By that time Baby E was very hungry, thirsty and tired. Still, she smiled and waved at the nurses and anesthesiologist, begged for the glass the kid across the way was drinking out of, and basically charmed everyone.

I was glad I was there to be a strong advocate for Baby E. Every time we saw someone new, I reminded them of Baby E's allergies. Finally, about the third or fourth person we talked to got a green "allergy" bracelet to put on Baby E along with her orange hospital bracelet.



Still, a nurse was going to go and get a cup of the dextrose-based oral versed for Baby E, and probably would have given it to her if I hadn't stopped her.

They said they couldn't use the homemade pear juice I'd brought to mix with the plain versed since it wasn't "clear enough", but they could mix it with cranberry juice. I knew the cranberry juice would probably have corn syrup and/or citric acid in it, so I wasn't comfortable with that. I've had the hospital "cranberry juice" and I know it's too sweet to be straight cranberry juice. I didn't want them to give it to her unless I could look over the ingredients first and verify that there were no corn contaminants.

Finally, they went to talk to the anesthesiologist and came back to say that we could either squirt the versed up her nose, which would burn and hurt but would be fast-acting, or we could just skip the versed altogether and go straight to the gas mask.

They said that, although it did have an amnesiac and calming effect, the versed was mainly for the parents' sake. Some parents are traumatized if their child cries when taken away by the nurse. If we thought we could handle having her cry a bit, we could skip the versed.

We decided to skip the versed.

The GI specialist explained the procedure to us and asked if we had any questions. She seemed nice.

Then the anesthesiologist gave us a long lecture about propofol. She reiterated that they weren't going to actually use propofol today, but she felt that it wasn't really necessary to avoid propofol since Baby E had never been given it before. She technically hadn't actually had an allergic reaction to propofol itself.

She went on about how most kids who are allergic to eggs really don't have issues with propofol, and avoiding it because of allergies is not really necessary. We kept telling her that Baby E isn't allergic to eggs, she is allergic to soy, and that propofol is in a soybean base.

The anesthesiologist said that she didn't know what would be in the propofol that was soy . . . but that most people who are allergic to eggs are allergic to the white, and there's only something derived from the yolk in propofol, so it was fine.

I told her again that the liquid base in propofol is soybean oil, and pointed out that the package insert itself gives precautions relating to soy allergy (as well as egg allergy). The propofol package insert says it can be contraindicated with soy allergies, and that soy-allergic people have had anaphylactic reactions to propofol. I really wished we had Baby E's allergy and emergency information notebook so I could show her the package insert, but we had inadvertently left it down at the front desk.

The anesthesiologist said again that most people who are allergic to soy probably don't have a problem with propofol. Yes, statistically most people who react to soy are allergic to only the protein and do not react to lecithin or refined soybean oil. However, occasionally you do get the extremely sensitive person who will react to the lethicin or the oil.

We know that Baby E is in that minority, and we are certain she reacts to soybean oil. We aren't just overreacting here; given Baby E's known, proven level of sensitivity it would be foolhardy to pipe soybean oil into her veins.

Anyway, the anesthesiologist humored the paranoid parents and refrained from using propofol.

A nurse took Baby E from us at the door to Surgery. She didn't cry at all.

They used plain saline in the IV and gave her only nitrous oxide and another gas (I can't remember which one . . . the list of possibilities they had given me earlier included isoflurane, sevoflurane, desflurane and halothane) as anesthetics.

I made sure to ask that they not give her anything to eat or drink afterwards until we were there. They said she could nurse as her drink after the procedure.

Less than 30 minutes later, they were done. We hurriedly gathered our things and went back to where Baby E was screaming frantically in the arms of a nurse.

Her little face was all puffy and swollen, and she had a bright red rash on her cheeks and in a ring around her nose and chin where the mask had been. There was an awful rattle in her throat, and her voice burbled when she cried. She had three lines attached to her; an IV in her foot, a blood pressure cuff on her right arm and a sensor on her left finger.

As I took her from the nurse, I asked, "Is this amount of congestion normal?" They assured me that it was and said she would "just have to cough it out." I see now why a cold is such a contraindication to general anesthetic.

At first I thought the red, swollen face was just from crying, but even after she calmed down and the redness from crying went away, the puffiness and rash were still there. Her tongue seemed swollen, too.

The GI doctor showed us a few of the pictures she'd taken during the endoscopy. She said that we wouldn't really know the results until the biopsies came back, but it was a good sign that everything looked normal in the camera.



Baby E nursed and was able to keep the milk down, although her stomach lurched a few times. She was very upset by the items attached to her hand and arm. She kept holding out her hand and fussing for us to take the thing off her finger.

Finally the nurse took off the sensor and blood pressure cuff. Baby E calmed down a bit for a few minutes, and then she realized that she still had something on her foot and she wanted it OFF! She kept saying "ow" and pointing at her foot and touching her cheeks.

They took us to the recovery room and found a rocking chair for me to sit in with Baby E. The nurse who took us to the recovery room took the opportunity to tell us repeatedly how bad soy is. She told us how dangerous it is for anyone to eat soy or use soy products. Our assurances that we have no soy in our home because of Baby E's allergies had no effect--she acted almost as though she was afraid we were going to go out and drink a glass of the horrible soy milk as soon as we left the hospital.

The nurse asked us to "promise her" that we would read Dr. Mercola's web site and consider the dangers of soy. I told her that I was quite aware of mercola, refraining from telling her that I have a very low opinion of his poorly-researched claims and his scare-tactic marketing techniques. Finally she left us alone.

Baby E was very fussy and restless and seemed disoriented and upset. She wanted both of her hands on my elbows at all times. I rocked her, rubbed her arms and legs, gently stroked her sore cheeks, and sang to her softly. She cried intermittently and nursed several times, briefly. Eventually she fell asleep.

An hour or so after the procedure, another nurse came to take the IV out. She was going to use an oil to loosen the adhesive around the IV, but when I asked what kind of oil it was she didn't know. Since vegetable oil is usually corn or soy-derived, we decided it would be safer not to use it around the puncture in her skin.

The nurse eased the tape off without even waking Baby E, and then she slept through DH getting her dressed in my arms. She kept reaching with her hands to make sure I was there, and then relaxing again after making sure I was still holding her.

Just as we were leaving, I asked the nurse if the rash on E's face was normal or not. She looked at Baby E's chart and said that she hadn't been given anything that should cause facial reddening or a rash as a side effect. She didn't know why she would have a rash like that, but it was not usual.

As soon as I put Baby E down in her car seat, she woke up. I gave her some bread and plain yogurt in the car. She was very eager to eat.

We picked up the older girls and headed home, where Baby E and I cuddled on the couch to watch a BabySongs video while DH took AJ and M&M out to run some errands.

Baby E and I laid on my bed while she nursed, and we both fell asleep. We slept for 3 hours, finally waking after DH and the older girls finished eating dinner.



These pictures were taken just before I put Baby E to bed. The rash was lighter, but still there.



Today we're all still tired. Baby E's rash has faded somewhat and the swelling in her face has gone down. She still has a bit of the rash in a ring around her face, especially under her eyes at the tops of her cheeks. She's still congested. She's a bit fussy and grumpy, and afraid to let me out of her sight, but otherwise seems to be mostly her normal self.

She gets really frightened whenever I try to put her to bed and leave the room. It's almost as though she's afraid that if she goes to sleep without me there she'll wake up in pain with tubes attached to her, in the arms of strangers again. I hope her fears will calm soon. It makes me wonder a bit if skipping the versed with its amnesiac effects was a mistake.

Last night I fell asleep on her bedroom floor, and today I ended up sitting in her room with the laptop while she tried unsuccessfully to take a nap.

Now I need to find out whether facial swelling and a rash is an acceptable side effect of the anesthesia or if it's considered an adverse or allergic reaction. I suppose it could be from the mask itself, but it was worst on her cheeks where I don't think the mask was touching. I didn't see exactly how the mask sat on her face.

It's definitely something we'll ask the doctor about. I'm also keeping a close eye on her today because she seems a little warm, and a fever is one of the things to watch for after this type of procedure.

[Update: After talking with the doctor and the anesthesiologist, it is clear that what Baby E experienced was in fact an allergic reaction.

Neither of the doctors had ever seen or heard of anything similar. They expect it was a contact reaction from the mask. The company that manufactured the mask is now trying to track down exactly which mask it was and what could have been in or on it.

However, there are reports in the medical literature of similar reactions to sevoflurane, which was the anesthetic used along with nitrous oxide for Baby E.

The endoscopy was negative.]