Test results are in...

First, I want to thank everyone for the wonderful support, positive thoughts, and prayers. It is hard to explain how much it means that, even after 2.5 years, friends, family and people unknown to us still keep us in their thoughts when we hit a bump in the road.

Today the doctor called, and what I feared happened: Loki cannot be diagnosed with pathological reflux. It means that, other than that we went through hell and back, the test basically did not conclude that Loki refluxes acidic stomach content more than any healthy person. The explanation of why he vomits as much as he does, and why it gets worse when we stop acid suppressants is somewhat of a mystery. Why, oh, why am I not surprised about this? In Loki's story it makes so much sense to not make sense!

However, the gastroenterologist explained that, although not very common, acid suppressants (such as the two drugs that he takes) can have a positive impact on non-pathological reflux. In addition, we discussed the possibility that for unknown reasons Loki may be sensitive to normal levels of acidity, and thus the regular medication has some effect as well.

We are frustrated to not have answers, especially after a disastrous week that really set Loki back. We are worried that the likelihood of answers is becoming slimmer with each test. Yet some solace was provided as well. Basically, the plan of action won't differ much from what would have happened were the test positive. With one major difference: the chance of a future Nissen fundoplication has become rather slim. One less surgery is not bad. One less opportunity to solve the issue is a little nerve wrecking, however.

What about pulling processed food out of Loki's stomach to home-test the motility of Loki's stomach? After two days I realized the results were rather inconsistent. At times I was able to pull up quite some food after hours of processing. On the other hand, on several occasions, the feeding tube immediately "sucked" into a vacuum. The doctor's explanation is that the positioning of the mickey button is probably such that the unless the stomach is "overflowing" the lining of the stomach gets sucked against the opening of the button and prevents any fluid and food to be pulled out.

Essentially, all we know is that Loki vomits frequently, less when on medication, more right after or during meals. The first step is to increase one of his reflux medication. If this does not significantly reduce the vomiting--and we really hope it will--Motillium is next (a drug to improve stomach motility).

The nephrologist was consulted, and the good news is that Loki's kidney is considered to be functioning "relatively" well. Loki is more easily dehydrated and has some on-and-off protienuria, which can cause serious long term damage. Apparently, though, the nephrologist does not think there is a contraindication against the usage of motillity drugs. If there is no significant effect after prescribing Motillium--and again we really hope there is--a gastroscopy including a biopsy would be next. Much further than that, we won't be thinking, because by then we would be done exploring and treating, unless the decision of a Nissen fundoplication is made based on negative tests.

Looking on the bright side, Loki does not suffer from pathological reflux. On the darker side, he still presents the exact same symptoms as any child who does receive the diagnosis. On the bright side, Loki may still grow out of this, and/or any of the medications may still make a difference. On the less bright side, if none of this works--and there is a realistic chance that is the case--Loki will continue a rough, bumpy road where food, eating, and hydrating remain themes for many years to come.

Ending on a positive note, Loki ate quite some food by mouth today. Yes, he did throw up almost his complete second tube feeding, but four hours later he was hungry and ate: 3 cookies, 50 grams of fruit/veggie smoothie, and approximately 50 grams of pureed pasta and veggies. This proves once again that the little guy is significantly more resilient than his mama!

Finally, before I forget, with water resistant band aid and some anti-biotic skin cleanser we are allowed to try out lake and river splashing this summer. Sometimes it is just a matter of asking enough doctors until one comes with a satisfying, yet reasonable and safe, answer!

Challenges

By now, I have three draft blog posts, but none are finished. Perhaps my goal should not be to address everything, and to limit myself to what really matters at this point in time. I find this rather challenging, however. It is so easy to focus on the medical bumps in the road, and forget all the wonderful minor and major steps Loki takes. However, the reality is that many doctors' visits lie behind us and, most likely, quite some still lie ahead of us.

First, we know that many are anxiously awaiting news on Loki's recent 24 hour esophageal pH test. Dad already mentioned in our last post that this one came with issues, and I dare say it was one of the rougher moments since Loki left the NICU two years ago.

After thrice weekly feeding therapy, an infant follow clinic visit (of 4 hours), and meeting with the pediatric surgeon in two the weeks before, Wednesday we made our way to the hospital once again. Loki's reflux medicines were put on hold for 5 days in order to get a "realistic" result of how much reflux actually occurs. We noticed an increase in vomiting, coughing, and belching after a couple days. This was accompanied by a significant decrease in food intake by mouth. In most cases, the placement of the NG is not all that complicated. In fact, it is no different than what we used to do often at home before Loki had his g-tube. Unfortunately, our lovely nurse was unable to get the tube in. Each time--and she tried approximately 6 times in each nostril--the tube got stuck after 7 centimeters. Loki, who started off very courageous and optimistic screamed louder with each try. When the nurse decided to give it a break and ask for help Loki exclaimed "Hooray, all done." A young and very gentle lab assistent got teary eyed when he told Loki we were not quite there yet.

After a call from the nurse, we were able to get assistance from a radiologist doctor. Loki kept pushing his little face in my neck and on my face for kisses, and did not want to let go when I tried to put him back on the table, under the x-ray machine. It took four people, and all their strength to get the NG in. I had to push Loki down on the table with all my might to keep him still. This was without a doubt one of the most heartbreaking and painful moments during my life as a mother.

I remember so many moments in the NICU, promising Loki that, once he was home, the poking, prodding, tubes, and hospital pains would be over. I would protect, cuddle, and love him more than anything. To hear him scream "no mama, no mama, no no" while seeing the panic and fear in his eyes built upon a lot of guilt and pain I feel for him. I want to protect Loki from pain and discomfort. Yet in order to help him get better, I am the person who forces him down on the table, unable to save him from this harsh reality. The guilt and sorrow which I feel about this throughout recent days is just the tip of the iceberg, I suspect.

Once the tube was placed and secured, I was introduced to the little machine which registered what occurred during reflux. However, what I did not know was that every little detail needed to be registered manually as well as written down. Practically, this meant that every time we started or ended a syringe of food or water (which we do about every 15-20 minutes), we pushed the on and the off button and then wrote it down. When Loki went horizontal--whether it was to sleep, to have his diaper changed, or just to play-- or got up, I pushed another on and off button and wrote it down. Medicine needed to be registered as well as every "event" including abnormal (reflux) cough, vomit, spit up, cry, etc. Add to that Loki's desire to pull out the tube, and I was ready to completely fall apart by the end of the day. To top it off, he was a bit ill with diarrhea, needing his diaper changed about every 15 minutes. We were all exhausted!

Loki slept in our bed because we needed to ensure the tube stayed in and did not disconnect from its little machine, so we barely slept. The next day we went back to the hospital to release Loki from this torturous machine. The boy we took back home, fortunately, was completely different from the little man we brought in. He was excited again, happy, and talkative. Unfortunately the 5 day break in reflux medications has had a huge impact. We are counting up to 15 vomits per day, lots of stomach agitation when we give Loki a shot of food or water, and an average of three loads of laundry per day, as well as many mop jobs. To prevent dehydration, we have been giving Loki oral rehydration salts to keep his electrolytes balanced. During our visit to the pediatrician on Friday (hospital trip number three of that week), we collected urine, and we're awaiting the results. The good news during this visit was Loki's weight gain: at 11.8 kg, up from 11.2 kg two weeks ago (albeit on a different scale).

Today we met Loki's gastroenterologist for the first time. Unfortunately, all the vomiting cost Loki 300 grams and we are back at 11.5 kg. Doctor Gierenz took her time to get to know Loki's story, but unfortunately she did not yet know any results. We had a lengthy conversation about Loki's situation. Unlike what the pediatrician said, she believed there is a small chance that these reflux issues may still improve until Loki is approximately five years of age. Before she is willing to discuss the Nissen fundoplication, she wants a better idea about what exactly causes the reflux, and thus wants to await the results of the pH probe. In addition, we must check Loki's stomach content three times per day. This means that besides our regular notation of what goes in, we literally empty his stomach by using the syringe and see how much is still left. We push that back in, wait a minute and add the next shot. Needless to say, this is somewhat of a gross job. The doctor is willing to increase the Nexium to see what the impact may be and possibly to discuss with a nephrologist the option of using Motilium. That is a motility drug which is cleared through the kidney and is known for it's damaging impact, but can have extremely positive effects on stomach motility. Finally, it is likely Loki will undergo a gastroscopy, in which the stomach and esophagus are examined with a little camera. At that time, a biopsy will be done as well. (Apparently, there are cases of esophagitis caused by food allergies where a regular gastroscopy is not enough to observe the inflammation.)

When all these tests and trials are completed, we may discuss the nissen fundoplication. This doctor thinks chances are that Loki's reflux is caused by gastric emptying rather than a less than optimal esophagal sphincter, which is what the Nissen fundoplication would address. Her reasoning is that Loki did not vomit from the very beginning, which is the case in most cases of straight-forward reflux. If she is right, the surgery could very well cause more problems.

Regardless of the cause and the treatment, we most likely have a long road ahead of us. Although we are inching back to what we know as "normal," the impact of this test has been scary. Loki barely shows any interest in eating or drinking by mouth, whereas before we had started to see the positive impact of his therapy. He gags and throws up with the littles pieces of jam in some yogurt and seems to have lost his taste for all the treats about which he had been so excited: chips, chocolate, applesauce, yogurt, ice cream etc. Even now, I do not feel that we have fully recovered. Dad and I both tense up when we hear Loki gag or cough. We can only sigh when the bucket and mop come out again. Seeing the same jackets repeatedly go into the laundry is completely frustrating. We are happy to see how resilient Loki is, but also painfully aware that every situation builds upon a large pile of traumatic events in this little guy's life. How can we protect him from more pain?

For now, we appreciate all the sweet calls and comments, and apologize for the lack of contact we have made. I am exhausted and worried about Loki's future. Even answering a phone call or email a message feels like a burden at times. With the sun coming out, the food staying in, and Loki returning to his happy and chatty self, I am sure you will hear from me again!

Reflux test tomorrow

Loki still has quite a few medical appointments. We'll write a summary soon, but for now wish to describe what we are doing this week.

Although he clearly has reflux, thus far it has not directly and inclusively observed in medical tests. The diagnosis is based on clinical observations by a variety of specialists. However, since Loki continues to throw up and have difficulties eating, his doctor is still considering a Nissen fundoplication. In order to consider such a serious surgery, the reflux has to be concluded based on a test. Tests in the past (1, 2) have not succeeded in giving useful results. So tomorrow he will start esophageal pH monitoring. He will get a special NG tube, which is inserted into his nose and down into his stomach. An X-ray will then be used to ensure that it is in exactly the right place, as this tube has pH (acidity) monitors, one for his stomach and one for his esophagus. Outside, the tube goes to a small monitoring device, and this all must stay in for 24 hours. Hopefully, this will provide solid evidence as to what exactly is going into his stomach, and help us decide whether he should have surgery.

A couple things are making this tough. One is that we had to stop his two reflux medications on Saturday. This has caused Loki to throw up a lot (i.e. six big throw ups today, three huge ones yesterday). We can't resume the medications until Thursday, and then it will take a couple days for them to take effect. In a bad case scenario, his vomiting causes so much loss of fluids that the doctors decide to not go through with the test.

The other aspect which is making this process a bit more difficult for us is that, although Loki has gone through worse, he is now older. He can now tell us how unpleasant the insertion of the NG tube is, and he will remember this more consciously. As we have been preparing him for the procedure, he shows some anxiety about the possible pain he will feel. Fortunately the promise of a tiny gift for him to play with tomorrow afternoon still makes him burst into a happy "hooray." Poor little guy!

Feb + Mar photos

A written update will soon follow. for now, sticks!

Loki has a new posed smile, which is squinting the eyes and pushing the jaw forward. (Here is his old pose.)

See what I mean?

The southern Netherlands celebrates Carnaval, several festive days right before Lent. We live just a bit into this southern, Catholic area. Nurse Margaret from California made him this wonderful outfit:

The Smile:

Again, the Smile:

With two cousins, one of whom lives in California:

Giving Sen a ride:

Reading with Mama:

At daycare:

Intensely painting at daycare:

Outside at daycare:

Growing up fast: