Friday, September 24, 2010

Day 2: She Let Daddy Hold Her

Phew. Finally – a moment to take a deep breath and slooowly exhale.

Since deciding to postpone BabyR’s procedures this week – I have had this nagging feeling that I am supposed to be doing something. We were supposed to take R into the hospital yesterday and at this very moment I would have been watching him “come out of” the anesthesia. Yuck. Although we will probably be doing the procedures in a few weeks I am very glad that my little boy is not going through them right now.

When our GI doc told me that he wanted to use test results from one of the twins in order to diagnose them both I was annoyed and irritated at the concept of treating two DIFFERENT patients based on ONE set of tests. That was BEFORE BabyM went through her procedure. It was pretty awful.

Poor baby had to be wrapped up in a blanket like a little baby burrito (the nurse’s term) and then have a feeding tube forced down her nose. Next she had an IV put in her hand (wrapped up like a burrito again). At that point she didn’t trust being laid down and it wasn’t until we were home for a while that she didn’t cry and fight against being laid down on her back. After a start like that it is no surprise that she was not willing to let anyone near her for anything else. That sure made things difficult as she had to have her vitals taken constantly (a little too much for what we were there for if you ask me). With Lancaster General being a teaching hospital it made it much more difficult on BabyM to have to accommodate the student nurses. Honestly if we were going to be there for any amount of time I would have told them no more student nurses – at all. The staff nurses were great and BabyM loved – well liked – Nurse Lauren (she was obviously experienced as a pediatric nurse).

There was one nurse who I would have had to “throw down with” had we been there longer. Oh well – when you are as involved with things as I am – it is bound to happen.

BabyM was a riot when she was feeling ok – and aside from being messed with she did really well. She wanted to go “out sieeed” which meant in the hallway. We would walk down one end of the hall way and she would say “moh, moh” (more) and we would go again. By the evenings she was so bored that she was RUNNING up and down the hallway – with me trying to keep up with her IV stand. At one point she got going so fast (she saw that the door off the ward was opened) that I almost yanked her feeding tube out by not keeping up with the IV stand.

Even though we were admitted around 9am it wasn’t until after 10pm that she started emptying her bowels. Ugh. If only the staff would have listened to Shawn… They were pushing 8 ounces per hour of the prep liquid via the feeding tube. This baby is not even 20 pounds and only eats around 6 ounces ever 3 or 4 hours. Shawn told the nurse she would be throwing it up at that rate. I am fairly sure that if I had been there at the time I would have insisted that they contact our doctor and start more slowly. Unfortunately I wasn’t there and by the time Shawn told me about it didn’t occur to me to have the doctor called. Sure enough it didn’t take long for her to start throwing it up, and the nurse decided to turn it off altogether. By the time the doctor was called and it was started up again it was around 9pm! That was a LONG night.

The next day we had to wait a very long time for the procedure to start. At least on the day of prep BabyM’s belly had the sensation of being full. The day of the procedure she was weak, tired, and hungry – she couldn’t have ANY thing to drink or eat – not even water or ice. She asked for milk often but she did great.

The staff was great; they wanted to wheel BabyM down to the OR in her crib. Yeah right, I insisted they let me carry her or hold her in a wheel chair because I knew she would just stand and cry. One great orderly was willing to accommodate and after realizing that they couldn’t really wield the crib and a chair she asked me if I wanted to ride in the crib. Ha! I had been in the crib most of the day and night anyway. BabyM got quite a kick out of going for a ride as we both sat in the crib – sides up – being wheeled through the hospital!

The nursing staff in the OR was great too, but it was pretty miserable to watch them walk off with my daughter. I am so used to being right there for everything – making sure there are no mistakes made. This was the time I HAD to let go of control though. The wait was long, but finally our GI doc came out and talked to me. He didn’t see much. We would have to wait for the biopsies. The anesthesiologist came out and talked to me as well. I SO liked Dr. Mike. At my request, he came onto the pediatric ward to consult with me the day before. I was concerned with giving BabyM the choice anesthesia since it contained soy oil. Given that BabyM has both an IgE allergy and a cell-mediated (FPIES) allergy to soy I was very concerned. Even though an allergic reaction to any oil is rare, Dr. Mike was patient and not all condescending to my concerns. We came up with a plan to preemptively treat BabyM with Benadryl for any possible IgE reaction and a steroid to combat any delayed, cell-mediated reaction. After the procedure Dr. Mike came out and told me that she did great. He had begun to push a small amount of the propofol and waited to see if there was a reaction, then a little more, then he gave the rest. We have been spending SO much time fighting for doctors to hear our concerns and proceed with caution – it was so refreshing to have someone like Dr. Mike.

BabyM was back to her normal self just a couple of days after getting home. By day two she even let her daddy hold her!


The scope ruled out any inflammatory bowel disease, crohn’s disease, ulcerative colitis etc.

There were no Eosinophilic Disorders (EGIDs) revealed. The good doctor decided to tell me that we could have missed this since BabyM was mostly on an elemental formula. We had known that and had been trialing some foods to trigger her immune system, but after hearing from him after the fact – we probably should have given her an extreme trigger (milk) in order to fully rule out EGIDs. Thanks for the info AFTER the procedure.

He did see nodular lymphoid hyperplasia – which is a common characteristic of food allergy he said. I have found this to be seen in FPIES after talking to the moms.

We are still waiting on the Lyme tests to come back.


  1. Thanks for the update. It helps since we are looking at this procedure soon too. So no reactions were seen to any of the meds given? Glad for you that it is just 'over'.

  2. No reactions Nichole - I am not sure if the steriod prevented any delayed-reaction or not (we'll never know...) I really liked the anesthesiaologist - I think he was really willing to listen and think outside of the box. Having a consult with him the day before was REALLY helpful.