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.

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.

A Late Announcement

The wait is over. Aidyn is off TPN and Omegaven! We had our CAIR clinic appointment on February 10th and we were given the go ahead to stop all IV fluids. I was shocked! I didn’t realize it would be cold turkey. IV Hydration is only as needed. Aidyn has been doing so well and it’s been almost three weeks. Last weekend he needed fluids, but that’s for another post (explained below). His weight probably hasn’t changed much since his weigh-in in Boston. It was 10.42 kg, or 22.9 lbs. We actually had to wait an extra month to find out Aidyn would be off TPN. The original Boston appointment was set for January 13th, but all flights were cancelled due to the Nor’easter. We scheduled for two weeks later, but after a lot of thought, we cancelled so we wouldn’t end up being stuck in Boston. Finally, another two weeks later, the appointment was set. Boy was it cold! Aidyn got to see the snow. He loves the outdoors, even when it’s full of snow and cold. If you can believe it, the next week, while we were back home and attending the appointment with the local GI doctor, Boston was hit again with more snow.

Dr. Ursea expressed her happiness on how far Aidyn has come during our local appointment. She reminded me that Aidyn’s weight gain would be slow for now. The nutritionist said he only has to make up an extra 200 calories per day with the loss of TPN. Sounds easy, but when you have a toddler whose eating all day anyway, with a threshold for volume, it can be tricky. I have realized this new, wonderful change, this new leaf means another adventure. The learning and researching continues. This turn in the journey with Aidyn has made us happy and excited, yet it is a little scary. We will see how he does over the next month and if all goes well, Aidyn’s line will be pulled by Dr. Puder during our April visit! He’ll be two years old by then and ready for a new chapter.

Valentine's Day - The last day of TPN.

One Year Old!

Aidyn is officially a toddler! He turned one year old on April 14th. We had a little family party for him. He was a very good sport with the party hat. A couple of weeks later, we celebrated again with the grandparents, uncle and cousins.

According to his NICU doctors, Aidyn either would have died by now or would not be living a good quality of life. They couldn’t be more wrong. Aidyn has been a survivor from the beginning and has the quality of life any child could have under normal circumstances. It is most likely he will never need a small bowel transplant; he is just doing extremely well! Aidyn is cruising all over, gets into everything, and is fully interested in food and eating. He loves music and sways to the beat. Baby talk and singing are heard throughout the house. He is full of energy and is just a happy child. One day, this life of tubes, dressing changes and Lovenox injections will be a distant memory.

Being mischievous.

Wearing a buggy mask.

Silly.

Books are a big hit!

First Haircut by Mom. Not bad.

Enjoying a snack. Mmmmmm.

At Aidyn’s appointment with his AZ G.I. doctor last month, it was decided we keep Aidyn’s TPN the same so he could get over what had been bothering him. The Dr. finally diagnosed Aidyn’s tummy troubles (although we had been waiting to hear back on some stool studies done a couple weeks before). Just as I suspected, he had bacterial overgrowth. It’s possible picked up a virus while traveling to Boston the end of March. The signs: smelly and loud gas, gurgling stomach noises, weird breath, more loose dirty diapers and a dip in appetite. Bacterial overgrowth is common among people with short bowel syndrome especially those who have no ileocecal valve, like Aidyn. This valve is between the small and large intestines. It keeps the bacteria from the large intestine from backing up into the small intestine, where the body’s immune system is. In the case of bacterial overgrowth, it overtakes the beneficial bacteria in the small intestine. Typically, for a person with a normal gut, it can be kept it in check by adding probiotics to the diet, but it is recommended we not use probiotics for Aidyn until he has his central line removed. Even the good bacteria may possibly migrate into the blood stream, potentially causing a line infection.

Aidyn was prescribed the antibiotic Flagyl and symptoms improved right away. He did have a side effect, watery stools. After 4 days I stopped the antibiotic. Aidyn was clearly getting dehydrated. I called Dr. Ursea’s office and left a message for the nurse and in the meantime, I called Danielle, Dr. Puder’s nurse in Boston. She offered to help get more saline hydration bags sent for Aidyn but wanted to wait until Dr. Ursea’s office responded. The office did respond and agreed to stop the antibiotics, but didn’t address the hydration. During the call, I explained to the nurse my concern; I expected another call back about arranging for more saline. No call. I ended up emailing Danielle at 3am after Aidyn still had a dry diaper (this, after his 7th hour of TPN infusion). Danielle called first thing in the morning and told me she arranged for hydration bags to be sent with the home supply company. We all were definitely disappointed that the local G.I. office failed to help. After Joseph called Dr. Ursea’s office, we figured out there was a breakdown in communication between the staff and doctors. Dr. Ursea called me personally from her cell phone after Joseph called. She apologized and said she would do what she could to improve the way things were handled. Thank God for Children’s Hospital Boston. They have always been there for us and always come through for Aidyn.

A week from last Friday we returned from our CAIR appointment in Boston. As usual, Aidyn made the staff happy with his good weight gain, overall health and activity levels. He weighed 19 lbs 13 ounces and measured 72.6 cm. We talked about how Aidyn doesn’t like baby foods as much or baby cereals at all. We will continue to add more foods to his diet and also introducing milk solids to see if he tolerates it. They recommended Aidyn reduce his TPN to 4 nights a week at the same volume of 625ml 12 hours a night and Omegaven 4 nights a week increased to 90 mls. His IV fluids will be 3 days a week, lowered to 500 mls a night. The team feel he should consume more fluids with the drop in IV fluid volume and also eat more to make up for the drop in TPN.

Taking the train and a walk to Children's Hospital Boston.

As I said, Aidyn is very interested in what we eat. He’s eating diced pears, peas, diced carrots and green beans, rice bread, rice crackers, chicken, sweet potatoes, potatoes, rice and avocado. He loves banana, but doesn’t tolerate it well. Now that summer is around the corner, we have introduced pedialyte throughout the day. He still drinks from a bottle. Getting him to transition to a cup is challenging. We are trying sippy cups, but all he wants to do is bite them, as he is still teething. He is getting a top “molar” in, so there’s tons of gnawing and drooling.

Loving food.

We did have another visit with Dr. Ursea this past Tuesday. She was overly attentive, probably because of the communication mishap earlier in this month. The nutritionist and the doctor were hesitant to reduce Aidyn’s TPN since his weight gain was slightly under the goal, but they know Boston is managing Aidyn’s care and wrote the new orders anyway. I am glad they complied. If it appears Aidyn isn’t gaining enough weight, it’s easy to add the TPN night back in. Joseph and I are willing to go for it. The doctors here in AZ and in Boston wean TPN in different ways. In AZ, volume is reduced first, and then they remove TPN nights. In Boston, they remove TPN nights and replace with IV fluids, then wean totally from IV fluids. The goal for complete weaning of fluids is still set for the end of this fall. We’re staying positive.

We're still here

We have been quite busy over the last few months with the holidays, in home therapies, insurance appealing (third time) and appointments. Aidyn will be one year old come next Wednesday, April 14th. He has been thriving well since the last post, but with a couple bumps along the way.

On February 3rd Aidyn was admitted into Phoenix Children’s Hospital with a fever of 103F and was started on antibiotics.

Phoenix Children's Hospital

We had a wound culture done at his central line site as well as a blood culture drawn and both grew cultures for Staphylococcus aureus. He was in the hospital for eight days and was given a cocktail of antibiotics for his line infection.

A hospital visit from Daddy before heading to work. 

He continued with i.v. oxicillian for three weeks at home. Thankfully his central line was saved. The infection may have developed because of a month long drainage issue Aidyn had with his broviac. A tissue, called granulation tissue, had grown around the broviac where it comes out of his skin.

January 26, 2010

It became weepy and smelly over the weeks. The local surgeon tried to cauterize it in the office a few weeks before the infection, but it grew back. Then, during our January trip to Boston, Dr. Puder surgically removed it.

January 28, 2010. Moments before surgery by Dr. Puder at Children's Hospital Boston.

January 30, 2010. Back home in AZ.

This minor surgery was thought to do the trick, but it has since grown back. For now, we’ll keep an eye on it. If it starts to drain excessively as before, we may decide to have his broviac replaced or tunneled out at the left side of his chest. So far, so good. 

Recently, Aidyn has been battling some sort of stomach bug or virus. We are waiting to hear back on one of the stool studies being done, but labs and cultures have come back negative for any infection. The problem started March 26th, the morning we flew back home from Aidyn’s Boston check up. First it was foul stools and loud gurgling. The next day, it progressed to increased stools and very bad gas. By the 29th, I called to make an appointment with the GI office. We felt terrible for him because every time he ate or had a bottle, the stomach would gurgle and the gas would come. It would end in some diarrhea. On the 30th, we had labs done and took stool samples. By his follow up appointment on April 1st, Aidyn started to feel better. Last weekend, I decided to reduce Aidyn’s calorie content of his formula which had only increased the weekend before. I thought this may help him get over his tummy trouble faster and it seems to be working. Of course, during all this time, I have been in touch with the Boston team. It’s possible the increase in calories may have made matters worse when the tummy trouble began. So, when I spoke to one of the nurses from Boston she thought it was smart to reduce the calorie intake for a few days. Speaking of Boston, the clinic appointment went well in March.

Joseph was able to make the CAIR appointment in Boston this time. Everyone was impressed with how big Aidyn had grown and how active he has become. He weighed in at 18 pounds exactly and his length measured 70 cm. His rate of growth dipped a bit, so decreasing TPN is not an option this time. He currently is on TPN 5 days a week with 2 days of hydration. His volume was changed from 553 mls to 625 mls per day. Aidyn’s overall growth is good since his height and length are very proportionate. His formula calorie intake will increase from 20 calories per ounce to 24 calories per ounce, with a goal of 30 calories per ounce. Also, he got the go ahead to cycle TPN hours down to 12 hours a day instead of 16. It has made a world of difference in the quality of life because Aidyn has become mobile.

He’s been crawling for at least 3 weeks and is pulling up and cruising, too. I suspect his rate of weight dipped because of all his physical activity and finicky eating from teething six new teeth. He now has a total of eight teeth! The plan for Aidyn is to increase volume intake. The doctors feel Aidyn can be off all IV fluids by this Fall. We are very happy about this goal. If it wasn’t so hot in Arizona, I am sure the goal would be sooner.

Aidyn had been consuming about a quarter cup (dry) of rice cereal, which uses an extra 3 ounces of formula a day. This is four times what I was giving him (per the dietitians). He still gets an increase of formula to his bottle feeds each week. I did reduce his bottle frequency from six to five per day since he was geting a good amount with his cereal about a month ago. But with his recent digestive issues, I will be giving him six botles a day again because he is starting to refuse his cereal . He is currently taking 110 ml each bottle (about 3 ¾ ounces each). Aidyn is eating many different stage 2 fruit and vegatable baby foods and was just recentnly introduced to chicken. I found a rice biscuit that he loves. It’s a nice little snack.

We have decided to stay away from gluten for now since Alyssa in on a gluten free diet. Aidyn generally enjoys all of what he is offered, but we’re still trying to figure out what his system handles best.

Holidays have been enjoyable. Enjoy pictures from Thanksgiving to Easter.

Thanksgiving:

Waiting for dinner to start.

Meeting Aunt Jen for the first time.

Christmastime:

Sitting with Grandparents, Eileen and Mike Stephany, Alyssa and good old Velvet.

New Years weekend, 2010:

A snuggle from Aunt Helen and Alyssa.

Enjoying Grandpa, Wes Charles.

A laugh with Abeba.

Happy in the morning.

Easter:

Mom and kids.

There is good news to announce. I appealed the insurance company's 2nd denial and it was overturned in March. Thank God! Third time’s a charm. The $19,000+ admission bill from May of last year is finally being paid, minus out of network costs. Now, we have to make sure all of the Boston CAIR appointments will also be paid. Also, Aidyn has been approved for 16 hours of respite nursing a week. It doesn’t seem like much, but it has been helpful. I can attend field trips with Alyssa, volunteer at her school, we can have a date night or do whatever. I still do the TPN myself (because I feel more comfortable about it), but the nurse helps with Lovenox injections, feeding, diapering, dressing changes and of course takes Aidyn’s vitals. We have a regular schedule of the nurse coming three days a week.She loves taking care of Aidyn and is a good fit for us.

Be on the lookout for Aidyn’s One year update.