He walks!

Aidyn has been dabbling in walking for a couple weeks now. But last Saturday, he went for it. It seems his medical issues are no match for his determination and curiosity.

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.

Raffle Time

On November 15th, a drawing was held to win a quilt handmade by Aidyn's grandmother, Eileen Stephany, and her good friend. Alyssa got to pick the winning ticket. A lucky resident of Sierra Vista, Arizona won the quilt.

We are very grateful for the fundraising quilt raffle held for Aidyn's medical benefit. Thanks to the exposure in the Sierra Vista Herald, many, many people purchased tickets in multiple quantities, making the raffle a great success. It raised just over $5000, which will help to pay out-of-network costs for Children's Hospital Boston. We are still waiting for the results of the appeal to the insurance company over Aidyn's medical care costs in Boston. If it doesn't go through and all efforts are exhausted, we will need more fundraisers to help with the costs.

Posing with the quilt.

Enjoying Grandma.

A Quick Boston Trip

It’s been awhile since we've updated, but that’s because we've been busy just living life with our family. Aidyn, at 7 months old now, continues to make great progress.
On November 10th, at his monthly G.I. visit in Phoenix, Aidyn weighed 13.8 lbs and 24.5 inches long. He is 97% in proportion with his weight and height, almost perfect. The nutritionist and G.I. doctor are both very pleased with how quickly Aidyn is making his improvements. Despite not increasing the PN volume when the nutritionist wanted, Aidyn continued to grow at a good rate (he went from 7 – 8 diaper changes a day to 3 – 4, a few weeks after the re-connection surgery.) There was some confusion as to which doctors would place the PN orders. After talking with the G.I. doctor in Boston, the AZ doctor now has control over PN changes with the home health pharmacy while Boston will be in charge of the Omegaven. Anyway, the conclusion is Aidyn must be absorbing his formula feeds and adapting. Aidyn is at 40cc’s for his six feedings. It will increase by 5cc’s each week as he tolerates them. Also, since Aidyn has progressed with great strides, he has been given the go ahead to start solids!

The G.I. doctor said since our goal is to have Aidyn come off TPN, baby food will not cut it. He is sampling Nutra Neocate, which is an amino acid based food. It has the calories and nutrients Aidyn will need in addition to the formula. It comes in powder form and is mixed with water to the desired consistency. After a week, Aidyn is doing a great job. He’s eager for each bite. We will slowly go from 1 feeding to 3 feedings a day. When we return to the doctor in a month, the doctor will talk about adding baby foods for flavor and tolerance. But, the Boston team has a slightly different idea.

We just had our CAIR appointment yesterday in Boston and are flying back to Arizona as I type. Joseph stayed behind this time because we can’t afford for him to take too many days off work. Dr. Puder wasn’t in clinic but his nurses were. They are very happy with Aidyn’s growth, as is the rest of the team. Everyone made the comment of what a big boy Aidyn has become. And, of course, Aidyn brought along his charm. Aidyn weighed 14 lbs 4 oz. At his corrected age of 5 ½ months, Aidyn is now on the 10% percentile for both weight and height. His head circumference is at the 50%. He continues to take oral iron, ursodiol (for bile production) and Lovenox (blood thinner, maintenance dose). His copper and ceruloplasmin levels were low according to last month’s labs, so the trace minerals may be adjusted depending on his labs drawn yesterday. As mentioned before, Aidyn has started solids. The Boston dietician feels Aidyn should start with rice cereal for a couple weeks, then onto fruit and veggie baby food, 2 – 3 teaspoons a day. She said it was fine to have Aidyn on the Nutra Neocate, but only to supplement. He needs to hold his own without formula as his main source of food, and we agree. The best part of the appointment was talk of cycling down the TPN more. The plan is to go from 21 hours to 18 hours a day of TPN and also drop to 6 days a week (with saline on the 7th day). It was very exciting news. The nurse will talk with the AZ doctor today about changing the PN order. Hopefully there will not be any resistance. If all goes well, Aidyn will start his new regimen next Thursday. Right now, Aidyn comes of TPN early evening, but we will switch to mornings so we can utilize his off time more constructively. It won’t be long before Aidyn is only on TPN for 12 hours a day. Yay!

Early Intervention services finally start next Tuesday, as will physical therapy. Those services will help Aidyn on track with his physical developments. He is getting better with tummy time and sitting up with his arms. We are waiting to hear back from Arizona Long Term Care to see if Aidyn qualifies for state financial aid. It will greatly help with the costs. We are appealing the insurance a second time since they have denied all CAIR team visits and the initial hospital stay in Boston. The insurance says since the Omegaven treatment is investigational, they won’t pay. Oddly, they have paid for his central line replacement and reconnection surgeries in Boston. It is obvious Aidyn has a medical need for the short bowel visits in Boston and we will go to the next level if the appeal doesn’t work again. There are over $19,000 due for the hospital stay and thousands more for the CAIR visits and labs. We are hoping this appeal sticks.

We did have a scare last Thursday. During a routine dressing change with the home health nurse, Aidyn’s central line was cut. I had been doing the actual dressing changes for the last few weeks while the nurse kept Aidyn still and assisted in handing me things. This time, I was having a hard time getting the tape off of the dressing where the line comes out from underneath. The nurse suggested her scissors. I asked her to do the cutting since she’s the experienced one in that area. Well, she proceeded to cut off the tape, the line moved (because Aidyn moved) and “snip.” I hear, “I can’t believe I just did that, I am so sorry.” With fear and disbelief, I ran for the clamp. Blood was coming through the line when I got back to Aidyn. After clamping the remaining line, I cleaned the site, put on a new dressing (I didn’t wait for it to dry) and got Aidyn ready for the ER. Alyssa was home from school that day because of the sniffles, so she came, too. I made her wear a mask the whole time. Her immune system is a bit compromised with gluten sensitivity, and with all the flu going around, that was the last thing we needed. Joseph was an hour away at work and feeling anxious and perplexed since he couldn’t be of immediate help. But he was helpful to me because I needed to hear his voice over the phone through my anxiety. We waited over two hours at the nearest ER (Banner Desert, the same hospital Aidyn was born) before the surgeon finally came to repair Aidyn’s line. Luckily, the line did not clot off. We were able to flush it and hook him back up to his TPN. It was ridiculous how long we waited and they didn’t even want to put a clean dressing on despite the moisture that was still underneath. Next time we will drive the 25 minutes to Phoenix Children’s Hospital to go to the ER. So now, Joseph and I decided we will do all Aidyn’s dressing changes. As a matter of fact, the Sunday prior to the mishap, we both changed Aidyn’s dressing ourselves because we were finally confident we could do it on our own. It’s too bad we didn’t just stop the nurse visits. I still thought I should continue to do the dressing changes with the nurse until she was comfortable with Joseph and me doing it on our own. Oh well. While changing the dressing last Sunday, Joseph and I found it a challenge to position the line under the dressing because it has a permanent sheath over the repaired area. But, between the two of us, we will figure it out.

We are looking forward to Aidyn’s food intake and hope he continues to tolerate his feeds as well as he is. Here are some pictures to enjoy!

At Alyssa's Birthday party at the park.

He loves to laugh.

With Grandpa and his wife.

Waiting in the car.

Sibling love.