Turning a Corner

Happy news!! Aidyn gained a pound since last month! He is 27.7 pounds, 12.6 kg and 36 inches. He was a champ getting his B12 shot and giving blood to check Vitamin D levels. The Dr. was enthusiastic about his progress since he had been stalling with weight gain for many months. She is happy to discontinue the use of antibiotics for overgrowth. He is absorbing more and he has not had any setbacks. Aidyn does not need to go back to clinic for four months. I am so proud of Aidyn, and myself!  It was a great day!

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.

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.

Timeline

As usual I am behind with updates, but will have one soon. In the meantime I have a snapshot of Aidyn life while he had a central line. I did this because a parent from a short bowel syndrome support group asked what the timeline looked like weaning off TPN. This is pretty detailed.


Aidyn was born at 34 weeks (4 lbs 12 oz) and got NEC at 3 days old.
* 3 days, 6 days old - 2 resections, jejunostomy, broviac, left with 15 - 18 cm small bowel and 50-75% of large bowel, no icv, no appendix
* 3 days old - TPN and Intralipids.
* 3 weeks old - started Lovenox because of a clot at tip of broviac
* 6 weeks old - went to Boston for eval, started intestinal rehab, switched to Omegaven (his liver was already bad by then), restarted feeds orally with breast milk (not put on transplant list to our surprise)
* 2 months old - Tpn reduced from 24 hr/day to 22 hr/day
* 3 months old - line replacement
* 5 months old - ostomy take down, successful reconnection, liver healing, started physical therapy 3 weeks after reconnection
* 6 months old - started Elecare (couldn't keep up with pumping)
* 7 months old - introduced solids, Cycled from 7 to 6 days/wk TPN/ 18 hr/day and hydration (saline) 1day/wk
* 8-10 months old ?? - Cycled from 6 to 5 days/wk TPN and 2 day/wk hydration 16 hr/day
* 9 months old - surgery to remove granulation from CVL site, 1st line infection/sepsis (Staphylococcus aureus)
* 11 months old - TPN/Omegaven/Saline reduced to 12 hr/day, 20 oz/day orally Elecare (20 al/oz)
* 13 months old - TPN/Omegaven down to 4 nights/wk, hydration(saline) 3 nights/wk, lots of solids and more oral fluids
* 15 months old - TPN/Omegaven down to 3 nights/wk, hydration 4 nights/wk, surgery for broviac replacement due to 8 month long granulation tissue problem, 2nd line infection/sepsis (staphylococcus aureus in new line!), hospitalized again for low creatinine levels most likely a reaction from Gentamicin and Unasyn combination, hospitalized a 3rd time in 3 weeks for another line infection (different bacteria)
* 18 months old - TPN/Omegaven the same, 2 nights hydration, 2 nights completely off, Elecare 30 cal/oz (from 27)
* 20 months old - blood in stool, allergy testing (allergic to wheat, cow's milk, beef), 4 nights off, 3 nights TPN/Omegaven, tested negative for cystic fibrosis but given pancreatic enzymes (Creon 6000) to absorb fat better
* 22 months old - TPN/Omegaven stopped, hydration as needed, peaches and bananas restricted (blood allergy test)
*23 months old - granulation around broviac again
*24 months old - Broviac removed!! 750 mls of Elecare a day. In addition, another 260 – 300 mls of fluids from ORS and non-dairy milks, Lovenox stopped

Aidyn was blessed enough to not have issues with vomiting, reflux or oral aversions. He also never did tube feedings, which is unusual for short bowel syndrome.

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!