Summer in Boston

Well, I thought I posted this entry, turns out it was waiting for pictures to be added. Here it is:

June 26th marked the 15^th time Aidyn had flown to Boston. He knows about everything when it comes to flying on a plane. He has traveling by air since he was 6 weeks old. Our family of four headed to Boston for another clinic appointment at Children's Hospital Boston. I am still very cautious about germs from the general public even though Aidyn doesn't have his central  line anymore. Each time we board a flight, I whip out my handy antibacterial wipes and wipe anything within arm’s reach.  Using the plane restroom is a task in itself for the average person, imagine bringing in your baby or toddler in, instructing him not to touch a thing so you can wipe all the surfaces before laying him down for a diaper change, or in the case now, getting him to hold on to you while he sits to do his thing during turbulence. Speaking of that, Aidyn did an impressive job at using the commode on the plane, TWICE on the way to Boston and once on the way back. He had dry pull-ups after each landing. 

This time around, we wanted to make a vacation out of the trip. We took advantage of all the miles we had and were able to pay for two tickets at $99 round trip each, one for free and the other at full price. We stayed in Burlington, a suburb of Boston and enjoyed the cooler weather Massachusetts had. It was nearly 100 degrees in Phoenix when we left and a nice, cool 67 degrees when we landed in Boston. It averaged about 85 degrees during the day, perfect. We arrived a couple nights before Aidyn’s appointment to relax and recover from the three hour jet lag. After a day at the Burlington Mall (where "Paul Blart: Mall Cop" was filmed), Aidyn had his first dip in a public pool, the hotel pool. He had fun going in and out of the cold pool, which surprised me because he never likes playing in the splash pads back at home .

Although long, Aidyn’s appointment with the CAIR team the next day went very well. He happily picked out a toy from the gift shop for having had to wait so long and for giving what a lot of blood for lab work. Everyone, the surgeon, nutritionist, GI specialist and nurse practitioner, all agreed that Aidyn was doing quite good. His weight was 27 lbs 12 oz (maybe a little inflated due to him having his clothes on) and it calculated just right for his height. They felt he was actually taking in enough calories for his growth and encourage us to keep doing what we are doing. We found out his Vitamin D results were 26.1 ng/mL and his B12 was 169 pg/mL. Both a bit low. We will continue to give the over the counter Vitamin D3 at 8000 iu/day and retest in a couple months. As for the B12, Aidyn will start B12 injections again.

Dr. Puder's Omegaven nurse came to see us while we waited for the CAIR team. Alexis chatted with us and with a sense of accomplishment she reminded me that Aidyn was one of the youngest babies to receive Omegaven there at Children’s Hospital. You can see the happiness in her face when she looked at Aidyn, seeing how big and healthy he got was remarkable. She let us know that Dr. Puder would love to see Aidyn and had him paged. We just love that man! He looks at Aidyn and without a second thought says he’s doing just fine. He chats with us about this and that, and then tells us of a conference in Phoenix that he will be attending early next year. He was hoping he could see us and we said we would definitely make it work. By then Aidyn will be almost 4 years old and in preschool.

Before coming back home to AZ, we spent a few days relaxing, going to the Museum of Science (which is amazing) and spent an afternoon at Revere Beach. 

It was a very nice trip to Massachusetts this summer. We got to spend a wonderful time together and came back with great reports for Aidyn. Aidyn is due back in another 6 months.

Summer is here!

I can’t believe summer is here already! It has started off very hot, so playtime outside is limited due to the high temperatures. By 10 am it is already 90 – 95 degrees. Aidyn had been increasing his fluid intake over the last few months.

Well, on April 14^th Aidyn turned three years old. He has come a long way in the last year. Shortly after his second birthday last year, he had his central line surgically removed by Dr. Puder a couple of hours before his CAIR appointment at Children’s Hospital Boston. I can’t tell you how happy we were to have that line removed. For the next 6 months or so, I kept hoping and praying Aidyn would not have to have one put back in. I am glad to say he is still line free. At the end of May Aidyn saw the GI. Aidyn weighed 12.2 kg, or 26.8 pounds, so he has gained four to five pounds since his line removal, but not without weight fluctuations. I worked very hard in finding the right balance of food and fluid intake to ensure he wouldn’t dump. In my mind, there was no point in allowing Aidyn to eat and drink absolutely any time he wanted if that meant he would lose possible nutrition in a dumping episode. Over time, Aidyn did tolerate feedings and fluids closer together. These days, I do allow him to eat and drink almost anytime he wants. He does haves a tendency to chug down all his fluids, so I control his drinking during meals, allowing ½ to 1 ounce increments between a few bites. It sort of forces him to sip. He still has popsicles that I make from the Ultima Replenisher electrolyte powder to help control his flow of fluid intake, too.

A trip to Sedona in January.

In the last few months Aidyn gained very little weight and it’s difficult to tell why. It could be because the Periactin he was taking was stopped and his appetite went down. Or, maybe he is burning more calories with the warmer weather. Or, it could be that I messed up his system when I didn’t give him his rotated antibiotics on time (a few days off), causing more liquid stools. The increase in drinking water? Maybe it is all of the above. Despite the lack of weight gain Aidyn has stayed healthy, maintained his weight and has grown in height. In January, he did catch a nasty cold after going to a preschool vision and hearing test. There were little children in and out all morning. He had fevers for a couple days and we managed it all at home without a doctor’s visit. He bounced back fairly well. His sister, Alyssa, and I ended up with the same thing, but we didn't recover as nicely as Aidyn did. 

Aidyn had been dealing with low Vitamin D levels for a year, and low B12 levels the past 6 months. The week of Thanksgiving Aidyn went from supplementing with 2000 units to 8000 units of Vitamin D2 a day. Levels were rechecked in January, but it went down to 17 from 21. The GI referred Aidyn to an Endocrinologist and it was suggested we try getting in at 10 – 15 minutes of sun three to four times a week. Labs at the beginning of April showed Aidyn’s Vitamin D went down to 14! It seemed obvious to the doctor Aidyn was just not absorbing the supplement. He suggested we increase to 16000 units a day. Labs at the end of May revealed Aidyn’s level went up to 28, still a little low, but much better. I believe the increase in Vitamin D supplementation along with weekly sun helped. We switched from D2 to D3 about a month ago. The insurance doesn’t cover the prescribed Vitamin D2 and it is very pricey. We will see what the over the counter D3 will do for Aidyn. 

Apples are Aidyn's favorite, but too much isn't good.

As for Vitamin B12, the Boston team started Aidyn on a series of three B12 injections (January, February and then March). Labs in April showed he was no longer low and the GI here in Phoenix decided to stop the treatment. Children’s Hospital Boston, on the other hand, felt it would be better to have Aidyn on a maintenance dose because of the portion of intestines Aidyn lost. It turned out a maintenance dose should have been in place as he is low again. The local GI wants to see what Boston thinks would be a good regimen once we go to the CAIR appointment the end of June.

 

I am happy to annouce that Aidyn will be attending preschool this fall! He aged out of the Early Intervention program and was evaluated for developmental preschool since he was premature and still has speech issues. He qualified for the preschool program based on speech alone. His articulation is still an issue and it was agreed that a school setting would be best for him. I can't wait to see the progress he will make once among his peers. He is such a bright child and always has a lot to say. It will be wonderful for him to speak where we all can completely understand him, or with out Mommy translating for him. I know it will make him feel better when he is better understood. Let's hope his immune system will be able to handle all the icky colds and such that he will be exposed to.

Oh, one last thing, my in-laws, Mike and Eileen Stephany sold their home over 200 miles away to be closer to us! We now have family close by and the kids will be able to see their grandparents a whole lot more. It really is nice having family just minutes away. In the couple of months they have been here, I have been able to catch up on three years of medical, dental and vet appointments that have been long over due. We are so grateful they can be of help to watch the kids, especially Aidyn.

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!