Summer in Fall

In Arizona it’s hard to believe Fall has started. Temperatures still top the high 90’s, and sometimes 100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very well keeping hydrated during the summer. I think what has been helpful is that I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave him runny/watery stools the first half of the week long antibiotic cycle. This is how I weaned him: In June, I started to space out the antibiotics by adding a week to the time Aidyn had off of Flagyl (initially only one week). By August he was able to go three weeks off the Flagyl. He’s currently on his fourth week off. 

First ice cream!

Two weeks ago I started adding ¼ teaspoon of baking soda to every 20 oz of water Aidyn drinks. Any extra gas build up he usually got seemed to disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find if I give a drop of oil of oregano for a couple days, it will kill the bacteria that the probiotics missed and the smell will lessen.

Big Boy bed!!

Aidyn received his first dose of B12 shots the beginning of September. He will continue to get them, with labs done every three months. His weight was checked and I was surprised Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.

Much needed haircut done by Mama.

I have some exciting news! Aidyn has started Preschool! He goes half a day, four days a week. It has been over six weeks and it is going smoothly. He did catch a cold three weeks into school, but he recovered quickly. His speech has improved and it is probably the combination of Speech Therapy at school, his peers and just plain time. So far there have been no potty accidents at school. He has good control of his bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping by the time he is four he will be potty trained AND off the bottle. Drinking Elecare formula out of anything else just won’t do. I shouldn't complain because at least he will still drink it and he has no feeding tubes.

Ready for school.

Finger paint!

Recap on Aidyn: He has only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and 50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition) for 21 months and drinks Elecare for half his calories. He eats what he can tolerate which is most meats, gluten-free starches and is limited to carrots, apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat, cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36 cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed. That’s it!

I always pray for the miracle that he wakes up one day with everything intact inside. That’s the kind of faith I have and it has gotten me through it all.

The Revolving Doctor's Door

Within days of coming home from Boston in April, Aidyn’s nursing from the state was dropped. I didn’t even get a phone call, I found out from the nurse when I called to set up the next visit. She thought I had been notified and felt terrible. I thought we would get at least a couple weeks to adjust, but not so. It was only 16 hours a week, but it sure was a great help; I could run errands or just catch up on laundry. Then, a few days later, Aidyn spiked a fever. I didn’t know if it was related to having surgery or being exposed to everyone in the hospital or the airplane. His fever topped at 103 by the time we got to the doctor’s office. Since there were no symptoms at the time, we were instructed to use Motrin and Tylenol up to four days as long as there were no other major symptoms. By the weekend, he was having a runny nose and cough. I almost took him in to the hospital for dehydration, but he seemed to do better after some rest. Hydrating Aidyn was tricky, he wanted more than he should drink at one time, causing more stools. I started giving Aidyn electrolyte pops to slow down his intake, and it helped. We avoided the hospital. Seems Aidyn just had a cold. I quickly learned fevers can’t be taken lightly without having the option of giving IV fluids, so I have to be sure to give extra fluids at the first sign of them.  



 Five days after line removal.                         Getting over his cold.    

Aidyn saw his hematologist May 3rd and we got the go ahead to stop giving him Lovenox injections. He was on Lovenox because of a blood clot he had a couple weeks after birth and that could have posed a problem with his PFO, a hole between the two chambers of his heart. It usually closes before the baby is born. I had given him over 1000 Lovenox injections already and was so happy to stop giving them. He still has bruised thighs. She advised us to check with the cardiologist to see if he still has a PFO. I have yet to set up the appointment with the cardiologist. It will happen but I would like to take a break from seeing more doctors right now.

First real bath. He wasn't sure about the water being poured down his back for the first time.
Much different than a sponge bath. Bath time is so fun for him now!

Aidyn’s appointment with his local GI was set for the next day, but unfortunately we didn’t get to see her. While I thought we arrived on time, we were a half hour late. I'm not sure whose mistake it was, but I thought the doctor would have worked Aidyn in since she had not seen him in three months and he had many changes to his care. We contemplated on finding another GI as it wasn’t the first time we felt let down. In the end we opted to stick it out with her because she has all his history and has shown her cooperation with Boston.

Backyard fun, a walk, Mexican food and a snuggle for Mother's Day.

Aidyn finally had his two year check up with the pediatrician the second week of May. His weight dipped to 10.02 kg, or 22.09 lbs. According to the NP in Boston, it plotted him below the 3rd percentile. It was most likely from the extra stooling the week before. He caught up on his vaccines, except chicken pox. Two days after getting his vaccines, Aidyn started with low grade fevers and then major stooling. I made sure to give extra fluids, but it was not working. He became more focused on drinking than eating, he looked tired, his mouth was dry and he looked thin. Four days after the vaccines I decided to bring him to the nearest ER at John C. Lincoln. Normally we would have taken him to Phoenix Children's Hospital, which is a 40 - 45 minute drive, but this hospital was only 15 minutes away. I was nervous because they had no history on Aidyn. They did a wonderful job and made contact with Boston so everyone could be on the same page. We had never been in a hospital where all the rooms were made for one. It was quiet and with no residents. It's too bad they don't have a specialty in pediatric gastroenterology. If Aidyn still had his line we would have went to Phoenix Children's and never found out what a nice hospital John C. Lincoln was.

 

Getting much needed rest before being discharged home.



Looking thin.

Anyway, Aidyn's CO2 was at 12 and his weight went down again to 9.6 kg, just over 21 lbs. He was admitted for dehydration and spent the night getting fluids and resting his gut. He had a rough night and was very agitated. Eventually he fell asleep. The next day we spent most of my birthday waiting to see if Aidyn would be able to go home. Labs revealed his CO2 went up to 19, his BUN decreased to 6 from 30 (a high number indicates dehydration) and he was negative for the Rotavirus that was going around. He started feeds again and was discharged so he could continue getting better at home. His weight at discharge was 10 kg, 22 lbs. A few days later, stool cultures resulted in nothing. It’s assumed he caught some sort of virus.  Aidyn finally saw the GI later in the week and his weight went down to 9.85 kg, 21.7 lbs. His stooling wasn’t under control yet, so in an effort to help, she recommended Aidyn take Imodium AD. We talked about starting Flagyl again to help with what may be bacterial overgrowth, as well as start probiotics. We did the Imodium AD for just a couple days and Aidyn’s bowel movements went back to three to four a day. The doctor gave us samples of Florastor, a yeast based probiotic, to try. It seemed to help for a while, but I stopped giving it to Aidyn about a month ago, as it looked like he may have been getting thrush from it. He has since started Culturelle. We will most likely cycle Culturelle and Florastor every few months.

 

Two weeks after the appointment, Aidyn started increasing weight, again. He was 10.17 kg, 22.4 lbs, the first week of June. We continued to check his weight each week.

 

 

Back to his eating antics.

During the month of June Aidyn’s weight slowly increased. By the time we went to CAIR at the end of June, Aidyn weighed 10.4 kg, 22.9 lbs. Recommendations were made to start Flagyl based on gassy symptoms and an abdominal x-ray he had in Boston. It showed dilation in his small intestine and colon. It indicated colonized bacteria. We also stopped goat’s products since he has a milk allergy. His Elecare increased to 36 calories per ounce, up from 30 calories per ounce. I started using a sugar-free powdered electrolyte drink called Ultima Replenisher for Aidyn for hydration. I thought the sugar in the Pedialyte and even the home made ORS was not being well tolerated by him. Sugar and salt are needed to absorb electrolytes, but it in my mind the sugar was making Aidyn have looser stools. The dietician said it should be okay for him to use this product since Aidyn has most of his colon. It uses a non-GMO maltodextrin to help the electrolytes absorb, and it’s sweetened with Stevia leaf and Lo Han Guo fruit extracts. We tried Ceralyte and it works great since it is rice-based, but it’s expensive. Also, it doesn’t make good popsicles. With the Ultima I can make popsicles to slow down Aidyn’s intake. It doesn’t taste bad, especially cold. Overall, the trip to Boston was helpful. The next appointment didn’t have to be scheduled for another four to six months! We go again November 3rd.

I’ll end this post with more pictures!

 

 

A much needed haircut, very handsome.

More updates to come soon!