2011 Wrap Up

It's been six months since this blog has been updated, but there's more than six months of updates! I have decided to write about everything through the end of 2011 and continue with a separate blog entry that will start with the New Year. Here I go!


Since coming back from Boston, in June last summer, Aidyn has steadily been gaining weight. From June to December he gained two and a half pounds! That’s a little over half a pound a month! There were moments of ups and downs with weight, but overall, pretty good. Lab results from June’s CAIR appointment showed Aidyn’s vitamin D level to be low. He started supplementing with 2000 units/day of it in July. Since Aidyn reacted well to the use of Flagyl for bacterial overgrowth, he was cycled on it every other week instead of one week on 2 weeks off. I also continued to give probiotics.

It had not yet been a year since Aidyn had a speech evaluation, but I requested another one because of my growing concern with his lack of clear communication. So, he had one at the end of July. Three weeks later we got the results. He scored with a severe delay this time. The speech pathologist recommended speech therapy for a minimum of a year. Aidyn had no problem understanding us, or with his receptive communication, but he could not articulate sounds that he should have been able to make. Outside the norm he could make “g” and “d” sounds, but not the typical “b” and “m” sounds. My theory was since Aidyn was intubated early in life and also for six of his seven surgeries, his throat and tongue became overstimulated which made him mainly produce sounds from those areas. Trying to get him to make “ba ba ba” or “ma ma ma” sounds had always been difficult. When he said “bye” it come out “dye” and “Mama” would be “Nana.” He did his best to convey what he wanted to say by pointing or taking us to what he wanted. He frequently became frustrated at us for not understanding his jibberish. In August he started speech therapy once a week. The therapist has been doing all she can to help with lots of different games and oh, the always fun iPad. To help stimulate better sensations with his lips we blow bubbles, use straws for drinking and I even bought an electric toothbrush. There has been some progress since we started speech therapy as he will now mimic the “ba” and “ma” sounds when asked, but he still is trying to incorporate them with words. I am happy to say he is saying "mama" more and more now. One thing Aidyn has going for him is his mastery of tones and syllables in words. Given the context of the situation, you can figure out what he’s saying at least 50% of the time. He is talking in complete sentences and I finally realized he has been doing so for months now. He loves mimicking vehicle sounds and is good at it, for example he makes sounds that are distinguishable between a morotcycle versus a car.

First time in the play pool last summer.

His first trip to nearby Sedona. Well, second if you count being in utero.

In mid August we took our first, but short, real vacation since having Aidyn! We headed to California’s Sea World. We spent one full day at Sea World and the next day we played in the sand and water at a nearby beach where we stayed. It was a very fun and relaxing trip, especially because we didn't have to worry about a central line anymore.

Very tired after a day of Sea World.

The beach was a definite hit.

In September, the local Gastroenterologist ordered stool studies and suggested we have him scoped to evaluate for possible Eosinophilic Gastroenteritis if his weight was lower at next month’s visit. He weighed 23 lbs 5.6 oz, but was 24lbs 4 oz the week before. His frequency in stools increased and they were more loose than usual. I thought it could have been the combination of giving him coconut milk and the round of Flagyl he started. I did further reading on the milk and there’s a possible laxative effect with it. With my urging I stopped his Creon medication. It seemed to give him major discomfort to the point of being extremely irritable. 

Bad tummy day at the park.

At the end of October, Aidyn’s weight was 24 lbs 3.7 oz.  the doctor was very pleased with his overall weight gain since she saw him in September, especially after stopping the Creon. It’s possible that at the time Aidyn started having discomfort he was making the needed enzymes to break down fat, and the combination of his enzymes and Creon were causing a negative side effect. There were no recommended changes to his medications or diet, and the doctor felt he did not need to continue with support from Creon as the stool studies were negative for blood and inflammation.

We headed to Boston Nov 3rd. It was a good visit to the CAIR clinic. However, Aidyn wasn't in great spirits since we had a long plane ride the day before, and got up early to do labs before our appointment. Members of the Omegaven team eagerly popped in to take a quick look at Aidyn and they were very impressed. He looked visibly healthier in terms of growth and had a nice increase in his weight since the last CAIR visit in June. Dr. Puder wasn’t in clinic that day, but the fellow surgeon paged him from another part of the hospital since I really wanted for him to see Aidyn. It was a kind gesture and Dr. Puder was happy to come. Aidyn was still cranky but it didn’t stop Dr. Puder and I from having a good talk. We flew back to Arizona a few hours after clinic. Labs from clinic showed Aidyn’s vitamin D still low and B12 a little low. B12 was 153pg/mL (normal 190-778) and Vitamin D 18.6ng/mL (normal 30 – 80). The week of Thanksgiving I started giving Aidyn the full vitamin D dose of 8000 units a day. Labs would be rechecked again in January for both vitamins. 

Boston Children's Hospital grounds.

Children's Hospital Boston lobby.

Enjoying Thanksgiving dinner.

Staying hydrated with a popsicle made of Ultima Replenisher electrolyte drink.

In December, I started noticing that Aidyn wasn’t having any bowel movement for many hours after waking up. I suspected he was controlling his bowels, especially when not at home.  Consequently, he started having bowel movements after bedtime. At his December appointment, his GI said he was probably withholding, causing residual stool to come after his body was relaxed. His weight did not change much. We decided to temporaily put Aidyn on Periactin, a drug usually used for allergies. Its side effect is increased appetite. The doctor put him on a low dose and we hoped it would help him gain more weight. In two weeks Aidyn gained a pound, putting him at 25 lbs. 7 oz! What a difference! We decided to keep using the Periactin for a little while longer.I started him on a new probiotic and it seemed to work better than the Culturelle.  The night time bowel movements stopped and he was on his way to being potty trained.  

This wraps up 2011. I plan on updating about the start of 2012 soon! Here are more pictures to enjoy.

Before ....

...and after haircut, done by yours truly.
Despite everything, he has a nice head of hair. It's been cut four times!

 

Post Line Removal

A lot has happened over the last 5 1/2 months. Aidyn had his central line removed, lost nursing through the state, he had his first real cold, got a stomach bug, was hospitalized for dehydration, and started battling with weight fluctuations. It has been a rollercoaster ride, for sure.
Towards the end of April the whole family flew to Boston for Aidyn’s CAIR appointment. It was an extra special trip because it would be a turning point in Aidyn's care. It was the first time all four of us have traveled to Boston together. We stayed six nights this visit, five of which was with the wonderful family in Brookline. They always make us feel at home.


Flying to Boston

 Aidyn had a consult appointment with Dr. Puder the day after we arrived. Dr. Puder had not seen Aidyn since last September, so he was thrilled to see an active, happy boy playing in the hall upon his arrival. He took the time to go over Aidyn’s progress, weight fluctuations, future cares and of course, down to earth chat. Dr. Puder was happy to make the suggestion to have the central line removed. He checked out the granulation tissue growing out of the CVL site and told us the surgery would be easy. Dr. Puder was just as excited as we were to have the CVL removed. He said that typically, in a case like Aidyn’s, TPN would most likely continue for another year or two. It was a very enjoyable appointment.

We reminded Dr. Puder how grateful we were to have him in our lives. He remembered what we told him when we first contacted him over two years ago by recalling our story. How Aidyn’s initial doctors told us he most likely wouldn’t live past the first surgeries and if he did, that his quality of life would be poor. How transplant was the only option for survival. We were told several times we could remove life support and let Aidyn pass away in our arms. And when Aidyn fought hard and was nearing discharge, we were encouraged to put Aidyn in a hospice home for terminally ill children. Instead, after discovering Omegaven, we took Aidyn home and boarded a commercial flight to Boston five days later. And the rest is history. We were probably the most troublesome parents for those doctors where he was born; I hope they saw that we were the best patient advocates they had ever come across. And one day, hopefully soon, I will send an update letter to that hospital, directed to the NICU. They must know that each patient deserves any and all treatments that are available out there before giving up.

At the time of clinic in April, Aidyn weighed 10.2 kg, or 22.4 lbs. But before clinic, Dr. Puder removed the CVL and granulation tissue in surgery.

Pre-surgery, still a little tired, especially with the three hour time difference.

 We were excited that the time was near to be able to give Aidyn a real bath! Aidyn did well during and after surgery. Within 30 minutes of waking up we left the hospital for lunch across the street and headed to clinic after that. The team was happy to see how far Aidyn had come. There were smiles all around. The plan was to increase food and fluid intake and come back in two months to be sure Aidyn was progressing.

The next few days were spent going to the Children’s Museum, the Aquarium and and spending time with my brother and sister, and her family.

Children's Museum

The Aquarium

The day before leaving Boston was Easter Sunday. Our host family invited us to Easter service and Easter dinner. Their three children, two teenagers and preteen, even set up an Easter egg hunt for Alyssa and Aidyn. They had so much fun, especially Alyssa. The home we stayed in was built in the 1890’s and is three floors with a finished basement and finished attic. Alyssa loved going up stairs from the main floor to continue the egg hunt.

Easter with the Mills.

Our trip to Boston in April was an enjoyable one. It was a start of a new life without a central line for Aidyn, for all of us.

It was a beautiful Easter Sunday. We enjoyed a walk and nearby park.

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!


 

Two Years Old!

Here we are, two years later. We celebrated Aidyn's second birthday with a small family party on Thursday. Aidyn has been a delightful addition to our family the last two years and we all adore him. He tried cake for the first time. I scraped off the frosting from the gluten-free cake and he wasn’t sure what to think. After a taste, he decided it was alright. He was in Heaven after opening gifts. Trucks and cars, what more can a boy want?

Aidyn has only a few clear words we understand, but a lot of his own style. He does say “no, go, thank you, all done, where’d it go, Dada, car.” I’m still waiting for “Mommy.” He is expressive and we cannot wait until those mashed up sounds turn into words we understand. Not just because we are waiting for that developmental milestone, but because he so smart. He contemplates and studies quite a bit, so hearing his thoughts on this and that will be a trip. Alyssa thinks he looks like Einstein with his crazy hair, but maybe he's has the same intellect, too.

I can honestly say this past year has been easier to swallow than the first. Although Aidyn had been hospitalized six times, two of which were surgeries, we have come into our "normal" family life. Next week we have another Boston trip planned. We are hoping and praying the central line will be removed. Aidyn did have a dip in weight from February to March, but he did deal with severe diarrhea and dehydration after a bout of antibiotics. He bounced back fairly shortly after a few days of IV hydration supplementation (at home) and has been TPN free for two months. Aidyn has a tentative OR date with Dr. Puder, pending his weight has increased. His weight was 10.285 kg Feb 22nd but 10.075 kg on March 31st. I really feel the line can be taken out despite the weight loss. I think he just needs a chance to show he can gain weight without TPN, maybe I’m too optimistic. He is a bit skinny, but so was Alyssa (and she still is). He seems healthy by way of looks and his activity levels. I am working on ways to add fats and protein. Without dairy, it’s a challenge.

We did vitamin labs Friday to see if there may be something missing, causing the lack of weight gain. The results most likely won't be in by the time we are in Boston's clinic next week. There haven’t been labs done since February when we went to Boston, so hopefully we haven’t missed anything. There haven’t been any blood in recent stool tests and we've been staying away from beef, dairy, gluten, bananas and peaches (well, most fruits). Aidyn still eats a bunch and drinks up to 750 mls of Elecare a day. In addition, he drinks another 260 – 300 mls of fluids from ORS and dairy milks. 

I am so glad we have Children’s Hospital Boston to follow Aidyn. He was supposed to have an appointment Monday with the local GI doctor, but I was called yesterday to reschedule. It would have been nice to have the call earlier in the week, because maybe we would have got in later this week. She hasn’t seen Aidyn since February. I am the one who scheduled a weight check in March since Dr. Ursea had no clinic appointment set up with Aidyn. I just think if you have a patient who has just come off TPN, there would be an interest in how progress is being made. Even if Aidyn has the line come out and we visit Boston less, much less, I think they will still be the ones we will take advice from.

I will update after next week’s Boston visit. Happy Easter!