Wednesday, October 12, 2011

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!


Saturday, April 16, 2011

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!

Sunday, March 13, 2011

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.

New Goals

Our goal for Aidyn is to increase his oral fluid intake and calorie consumption. We must make up for what Aidyn would have been getting from TPN and lipids. I am searching for calorie dense foods he can tolerate. As was mentioned in a previous post, Aidyn had both the skin prick and skin patch allergy testing done and was found to be sensitive to beef, cow’s milk and possibly wheat. A recent RAST test was done and I got an unofficial, over the phone result read by the nurse. It appears Aidyn may have sensitivities to peaches and bananas, too. Giving up beef is easy, but finding alternatives to cow’s milk and wheat that contain a lot of calories is difficult. Of course, Aidyn gets most of his calories from Elecare, an elemental formula. He is easily taking 21 – 23 ounces of that daily. Sometimes he may have a few ounces of goat’s milk or coconut milk, too. Here’s an example a typical day of eating, which includes supplements, vitamins and meds:

730 am – 120 - 150 mls (4 -5 oz)of Elecare, fish oil (1g of DHA/EPA), Ursodiol
930 am – breakfast: goat cheese, corn tortilla, avocado, ¼ - ½ tsp coconut oil, vitamins
12:30 pm – 120 mls Elecare
3:30 pm – 120 – 150 mls Elecare, 1 g fish oil
6:00 pm - dinner: rice with Braggs amino acids (like soy sauce), chicken sausage, toddler carrots, maybe fish oil
8:30 pm – 120 mls Elecare, ¼ - ½ tsp coconut oil, Ursodiol, Lovenox injection
11:30 pm – 150 mls Elecare

Aidyn also eats turkey, pork, deli meats, eggs, tomato or spaghetti sauce on pasta or rice and peas. He snacks in between with foods like: pasta, pretzels, potato chips, cookies, goat cheese, bread and tortillas. We stay away from most fruits and veggies because of the sugar and fiber contents. He does have a little applesauce with his enzymes, though. He eats gluten free foods, just like his sister (she was unofficially diagnosed gluten sensitive when she was two). I use Smart Balance original Light “butter” since it’s non-dairy and coconut oil in cooking. Before each Elecare drink, meal or snacks with protein or high fat, he is given Creon 6000, a pancreatic enzyme. He also drinks at least 8 ounces of oral rehydration solutions (ORS) in between. I do not use Pedialyte for ORS because it seems Aidyn doesn’t tolerate it well. I think it may be the sugar. Instead, I make his ORS from a recipe I found on the internet. It uses rice cereal in place of sugar. The recipe is as follows:

• 1/2 cup dry, precooked baby rice cereal
• 2 cups water
• 1/2 teaspoon salt

I combine the ingredients in a blender until well dissolved and smooth. It’s thick, but drinkable. It is refrigerated and thrown out after 24 hours. I think it works better for Aidyn since the rice absorbs slower than straight sugar.

I have been attending a monthly webinar series in nutrition for short bowel syndrome called Maximize Health, through Aidyn’s medical supply company. ThriveRx is great because they aren’t just a pharmacy providing medicines and supplies, but a company that provide educational nutritional support with the help of their pharmacists, nurses and dietitians. The series has been helpful in knowing what percentage of proteins, fats and carbohydrates belong in his diet.

Right now, the challenge is trying to separate Aidyn’s drinking from eating. He tends to want more to drink the later part of the day. I spread Aidyn’s drinking by offering one or two ounces at a time and distracting him with playing, books or walks (or whatever). Of course, that’s not always possible and he will drink a large amount and then “dump” a half hour later. I do offer him drinks when he’s not asking for it in an attempt to hydrate him before he’s thirsty. It will be easier as he gets older to make him understand that it’s best he drinks his fluids more slowly, especially when he can communicate to me better.

This video is from back in November, when he was trying Goat cheese for the first time. He ended up eating quite a bit after this video and it's one of his favorite foods.

A Little Hiccup

A little over a week ago, I brought Aidyn to the surgeon’s office to have the stitches removed that we’re still firmly in place around his broviac. The hefty, knotted end of the stitches was cutting into his skin and the skin started weeping. As a result, granulation tissue started growing around his line. Sounds like a repeat of last year. Anyway, the surgeon prescribed Aidyn Keflex since the site looked infected. He said to use it for two days and call back in three to four days to see if the wound culture sample he took grows anything out. So we started the meds a week from last Wednesday and that Friday. In the meantime, Aidyn started showing signs of bacterial overgrowth over the weekend resulting in a lot of stool volume and getting dehydrated. I had to use IV fluids for the first time in 19 days since being off TPN. Monday, I was instructed to continue using the antibiotic since the wound culture came back positive with some staph cocci gram positive bacteria growing on it. The site looks better now, but the tissue is still growing.

Aidyn really had a hard time since he was stooling so much and then getting lots of gas once we restarted the antibiotics. He lost his appetite for a couple days and he couldn’t take the Elecare full strength at first. I am sure it’s because he was dealing with bacteria die off from the Keflex killing off the overgrowth in his gut. He is back to normal now, but we will see what happens in the next few days since he had his last dose of antibiotics yesterday morning. With this experience, it shows us what we may have to deal with when Aidyn gets sick and looses fluid without a central line. We may just have to hospitalize him for fluids in the future.

Dehydrated and off track.

When we had our Boston visit last month, I asked the resident surgeon on staff that day if he could remove the stitches. At that time, Aidyn had layers of Iodine covering the exit site on the line. Stella, our respite nurse, and I had been slowly getting those layers of Iodine off the line each week during dressing changes using hydrogen peroxide. With doing so the ends of the stitches around the line were able to move more freely.

Taken 1/07/11, before the we dissolved the iodine and stitched came off.
Anyway, the resident surgeon did not feel comfortable removing the stitches, but he did shorten a couple ends. Looking back, I think if the stitches were removed when I requested it, Aidyn probably wouldn’t have had the granulation tissue growing. Here I thought removing the layers of iodine from the broviac site would make it better, but really, it made things worse. I just have to leave those thoughts alone now. There’s a reason it happened this way, I just don’t know yet. Hopefully it will not become a problem anymore and that we can wait until next month when we go back to Boston to deal with the line. Hopefully it will come out.

Back to himself.

Wednesday, February 16, 2011

Update Part 2, 2010

The second half of August finally greeted us with some relief from prior hospitalizations and antibiotic rituals at home. Surprisingly, Aidyn did not end up with bacterial overgrowth as he did after his bout with antibiotics back in April. I can only credit adding coconut oil to his diet.

You see, after Aidyn’s treatment for his line infection in July, I became suspicious about possible bacterial overgrowth symptoms. There were increased stools, frothy at times and very bad gas. I didn’t want to put him on more antibiotics. I figured he would have to be cycled on and off once he was started on antibiotics again. We didn’t want that, so I did a little research. I found several natural things that have claimed to help with bacteria, such as grapefruit seed extract (GSE), garlic and coconut oil. The GSE could cause bleeding in those taking Warfarin, a blood thinner. Aidyn isn’t on that, but is on another blood thinner medication, Lovenox. I decided we should stay away from GSE. I tried garlic drops for a couple days and it seemed to help, but I read it may possibly wipe out all the beneficial bacteria, too. I stopped the garlic and started adding coconut oil to Aidyn’s diet. It appeared to stop all overgrowth symptoms. I was very amazed. So, since July, Aidyn has been taking about ¼ to½ teaspoon of coconut oil a day. There has not been one episode of bacterial overgrowth. Since we all like the taste of coconut, I have been baking with it. It’s great in pancakes, cakes, brownies and such. I buy unrefined extra virgin coconut oil. I do use it in regular cooking, but using the refined oil is better tasting since the coconut flavor is mild to none. The dietician and nurse practitioner in Boston are very interested in Aidyn’s use of coconut oil. They have even asked what brand we use and where I buy it.

In September we traveled to Boston for our routine visit. Aidyn gained some weight and maintained it. The team was happy with that since he had been in and out of the hospital in July and August. But since he didn’t gain tremendous weight, the team thought it was best to keep the TPN at 3 nights per week and try for two nights off everything. That was great news. Also, his Elecare concentration went from 27 calories per ounce to 30 calories per ounce. It took him a couple of weeks to adjust. His appetite increased and he started eating more frequently, but taking in less formula volume than before. He always knows what his limits are and I try to respect that.

It was a long day at clinic.
Boston is beautiful in the Fall.
Right after returning from our September visit in Boston, we moved. Finally, we headed north of Phoenix to ease Joseph’s commute. He went from driving 1 – 1 ½ hours each way (6 days a week) to 15 minutes each way. We love our new neighborhood and Alyssa loves her new school. The transition was great for all. Alyssa and Aidyn go to the park around the corner almost daily and Joseph can spend more time at home with us, not to mention if Aidyn funs a fever, Joseph can be home quickly so we can organize going to the hospital (knock on wood, he hasn’t been there since summer). We were sad to say goodbye to Roxanne, Aidyn's respite nurse, who was like a second grandmother to Aidyn. Luckily, Aidyn took to Stella, his new nurse, very well. She helps me with CVL dressing changes and general work that revolves around Aidyn (washing bottles, preparing formula, laundry, and of course, Aidyn, himself). I really utilize the time to catch up on much needed housework and grocery errands. I still haven’t had the time to volunteer at Alyssa’s school, as I used to do before Aidyn came along. I was hoping the break from Aidyn’s cares would allow me that and maybe it will soon.

Aidyn, 18 months old, Alyssa almost nine, Oct. 2010.

Aidyn and Alyssa enjoyed Halloween this year. It was fun to dress Aidyn up in his skeleton costume and have him join Alyssa trick-or-treating. Alyssa loved having him there. The year before, he was still infusing daily for about 18 hours, so it wasn’t worth having him experience Halloween. He wouldn’t have enjoyed it anyway. Alyssa scored well, especially because she could have all of Aidyn’s loot, at least all the gluten-free ones.

In November, Aidyn saw an allergist to rule out any potential food problems. I had him tested for about 40 foods. I felt terrible seeing him pricked on his entire back, but I wanted to be sure we covered a lot of what he was being offered and what he would potentially try. It turned out he was intolerant to beef and dairy, and slightly to wheat. He had not been eating any gluten, but lots of dairy and beef. We did a patch test for eggs, wheat, goat’s milk, soy, and corn. Wheat was the only one he had a slight reaction to. Aidyn finally had his immunizations updated with his new pediatrician. He was behind quite a bit since we opted not to have them done this summer. We are very happy with the new pediatrician. He is intrigued by Aidyn’s story and progress, and impressed with his well being.

Barely two months in our new home, we were celebrating Thanksgiving with my dad and family, but the week before was another Boston trip. We stayed with the Mills family, our home away from home. They have been wonderful, allowing us to stay with them for each appointment or hospital stay. They look forward to seeing us each time, as we do them. The clinic appointment revealed Aidyn actually flattened out on the growth curve. He had not gained enough weight to wean any TPN. Despite the small weight gain, the team decided it was time to knock off the remaining nights of hydration. I was a little nervous about this new change, but knew I could just give Aidyn supplemental hydration if needed.

Waiting for our cab to go to Children's Hospital Boston.

The GI visit back at home gave me mixed feelings. Aidyn had his stools tested for fat malabsorption and blood. Dr. Ursea wanted to figure out why Aidyn did not gain much weight. Test results showed he was not absorbing his entire fat intake and there were microscopic amounts of blood in his stool. There were two concerns: Aidyn could have cystic fibrosis (the cause of malabsorption) and eosinophilic gastroenteritis (a result of more severe food intolerance, leading to malnutrition if not corrected). A sweat test could diagnose cystic fibrosis and an upper endoscopy with a flexible sigmoidoscopy could diagnose eosinophilic gastroenteritis. Since Aidyn had just stopped eaten the offending foods just about a week prior to Dr. Ursea’s appointment we did not want to have invasive procedures done yet. The team in Boston agreed. We waited to be scheduled for the sweat test and discussed the invasive EGD and flexible sigmoidoscopy at the next appointment. In the meantime, Aidyn was prescribed pancreatic enzymes (Creon 6000) to help with digestion, in case his pancreas was indeed having trouble with digestion. It wouldn’t hurt.

Lovin' the tortilla chips.

It's like playing "Where's Waldo?"
December was super busy, as anyone might imagine. Aidyn started the enzymes and seemed to be eating and drinking a whole lot more, but not before having some gassy symptoms, distended stomach and maybe constipation (how can you get constipated when your poop is like diarrhea most of the time?). I think the introduction of the enzymes caused a slight side effect. It has since resolved. Anyhow, I was sure he gained weight, but a visit to Dr. Ursea’s monthly check up showed he gained hardly any. He was healthy and we just kept the TPN the same and gave the enzymes a chance to start working.

Three generations.
Christmas was a whole new ball game this time. Santa was very generous to Aidyn and Alyssa, and so were a few folks who made sure they would have a great Christmas. We appreciated the extra gifts from friends and family. Joseph’s parents came for a visit Christmas day and my family came up for New Years Eve.

It felt like a much happier holiday this time, as Aidyn was healthier and we were more relaxed. There hadn’t been any hospitalizations since August and we all have been making new friends in our new neighborhood. We will soon be posting more recent news...good news!