Month 11 Update #60

Julie had an upper GI test performed on January 25th at the Children’s hospital in Plano, TX. Sarah couldn’t stay in the room because of the risk from the x-rays, but I got a full view of the procedure – fascinating!

I got to wear the metal apron while they strapped Julie to a wooden board. They inserted the radioactive dye into her button while we watched on the screen. Then they moved Julie to the right, left, up and down watching the dye flow around her stomach. After several motions, they had a nice outline of her stomach. The nissen prevented any of the fluid from escaping through the esophagus. While the stomach walls appeared irregularly shaped and hard to follow, the nissen stood out even to my untrained eyes. It was a straight line across the top of the stomach.

Julie with Dad just before the upper GI procedure
Julie with Dad just before the upper GI procedure

After finding no problem with the nissen from the stomach side, the doctor offered to test the nissen from the top. Julie had barely tolerated the procedure up to this point and the doctor warned me that Julie would protest even more loudly. I concluded that we needed to know as much as possible without having to redo the procedure again, so I agreed. Julie couldn’t move a muscle, heard strange noises all around her, and got shook & rolled over in all (and I mean ALL) directions. Now, she got a feeding tube up her nose and down her throat. She really screamed at this, poor kid! The doctor injected several small amounts of fluid through the tube to a position above the nissen. We could clearly see the liquid flowing through the nissen without obstruction, while the nissen prevented any fluid from coming back up the esophagus.

They also took some pictures of Julie sucking from a bottle. This looked just like the video we watched in high school biology of someone eating a banana. I couldn’t understand at first, but the doctor explained that Julie didn’t know what to do with her tongue. Instead of a regular pattern of suck, swallow, breathe, Julie’s tongue sucked several times in rapid succession before swallowing. She followed no rhythm and struggled while swallowing. This helped me understand her feeding issues better.

Unfortunately, Julie couldn’t share my wonder and amazement.

The procedure proved without any doubt that the nissen worked as advertised. Julie’s nausea must have another cause and sufficiently severe to negate the nissen.


It seems that we have tried everything to get Julie to stop throwing up. We’ve changed her formula twice, tried filtered water, changed the bottles we use to store formula, given her Tylenol and Advil for teething pain and fever, changed the number of feeds per day, given her Prevacid, Tums and Maalox for acid reflux, changed the speed of the feeding pump, we’ve taken her to the pediatrician twice, done an upper GI series, elevated the crib and talked to all of her doctors. She gets better for a couple days and then reverts, better for a couple days and then reverts, over and over again. It’s been going on for over a month now.

Aerobics
Aerobics

Yet, there is some degree of improvement. She recently started to squeal with delight when we interact with her. We had never heard some of these sounds and volumes from her before and her facial expression tells us that she is very happy. The recent incidents involve a small volume of material which she can handle safely without fear of her drowning. And Julie has been drinking formula from a small cup.

Repeat, please
Repeat, please

Sarah suggested we simply withhold all supplements and drugs for a while. We are still giving her one of her inhalers. As of today, this plan seems to be helping except that Julie is still throwing up first thing in the morning (sometimes before her first meal) about a tablespoon of yellow goop. I’m inclined to keep up this minimalistic approach for another couple days and then add things back slowly. We might not be able to resolve the problem, but it appears that we can manage it. We still have five weeks before we see our new GI doctor. We’re hoping that he can make heads or tails out of it all.

The thinker
The thinker

Sarah spent most of last week fighting with the previous GI nurse practitioner to get us transferred to the real doctor. Our lung doctor agreed to help us if needed. After a dozen phone calls from Sarah and Julie’s other nurses, one of the nurses from the GI people called me at work in the Sherman plant. I tried to explain the situation but got cut off by the lousy cell phone coverage in the facility. Then the nurse called Sarah, almost in tears, because she thought I had hung up on her. Sarah reassured her that I wouldn’t do that, but it was all too much for the poor woman so she finally let Sarah schedule an appointment with the real doctor. He is very good hence in great demand, so we have to wait. Almost all of our doctors know him and highly recommend him – we really have the best folks looking after Julie.

We finally heard from the oncologist and he had the results from Julie’s blood work. She continued to show improvement, but not quite as much as he had hoped, so we are supposed to see him again in 3 months. Pity! Julie hasn’t graduated after all, but the doctor is just being thorough. My sister-in-law, Marla, came over Monday night to babysit. It was the first time in five months since Sarah and I were able to get out of the house. We had a great evening – a meal, some shopping and a little walk in the fog.

Marla and Julie had a quiet time since Julie slept the whole time, but Marla was able to say hello before we put Julie down in her crib. I’m including some pictures from November and will try to send out more very soon.

Please pray that we’ll figure out why Julie is throwing up and resolve the problem.

Andy and Sarah Horn


While not life threatening, Julie’s situation seems more frustrating that any previous issue she has faced. We spent hours each day monitoring Julie during feeding time. On the one hand, she needed to remain still to keep from pulling at the button. On the other hand, she needed to move to clear her throat and mouth in case of an incident. Naturally, we remained concerned throughout each of these sessions. Our stress level remained on red alert for weeks.

The folks in the NICU told us that Julie could NOT throw up while her g-tube was vented. The venting should allow the stomach contents to escape well before they come through the nissen. Well, I have news for them! Julie found a way.

Venting Julie after feeding through a large open syringe
Venting Julie after feeding through a large open syringe

Venting Julie often produced more fluids than any of our syringes could handle. So, we had to improvise with other containers to extract enough stomach contents to allow the trapped gas to escape and relieve the pressure Julie experienced. We never knew what to expect when we started the process after each feeding so we needed to be ready for anything.

After several visits with the nurse practitioner, we became increasingly anxious to see a real GI doctor. Both Julie’s pediatrician and (especially) her pulmonologist stressed this with us and confirmed out frustration with Julie’s lack of progress. The hospital clinic continued to run interference and pushing us towards the NP rather than the MD.

In addition to Julie’s lack of progress, the NP had an attitude towards me. Sarah and I ran into very few problem people during our tours around the medical professionals in Dallas. They worked with us and helped us understand Julie’s issues and empowered us to care for Julie. This gal got so bad, that Sarah and I would agree ahead of time that I wouldn’t talk during the appointment just to make the time more pleasant. It worked well until she started picking on Sarah, too. By that time, we had reached our limit and needed to get something done.

We also had reached our limit with Julie’s physical therapist. We liked her well enough, but Julie made little progress in three months. She could hold her head and body steady while in a sitting position, but Julie could not sit up on her own. She still could not roll over from back to stomach, crawl, etc. We heard that a new therapist was about to join the company we worked with and so we politicked for this therapist for over a month. As it turned out our PT announced her retirement so we parted as friends while looking forward to a new therapist. Meanwhile, Julie waited for solutions.