Long overdue update…June and July - edited: Now with pictures!

It seems we’ve been missing in action. I had this idea I would update this blog at least once a month. Trying to put that idea into fruition has been a challenge. Almost five months have passed which means there have been many new accomplishments, but not without a few setbacks.

The summer was busy. My older sister, Cheryl, and her family flew from Maryland and spent two weeks in Arizona vacationing and visiting family from Sierra Vista to Tucson to Chandler. It was a great visit. Everyone finally got to meet Aidyn. He charmed them all. At one point, my house was full of Aunt’s with their families and grandparents from both sides.

With Aunt Cheryl.

Playing with Aunt Jen.

Opening new toys with Grandpa.

By the end of June, Aidyn was walking. He thrives well on praise, so it didn’t take him long to master his new skill. If you can recall, Aidyn had an ostomy up until he was 5 months old. As an infant, Aidyn loved sleeping on his stomach. I was so fearful his ostomy bag would leak and get all over his central line dressing. I didn’t allow him to do tummy time and it resulted in a weak upper tone. He started receiving weekly physical therapy sessions in the home last November. At that time, he was 7 months old and still could not yet roll over to one side, another result of no tummy time. I wasn’t sure how physical therapy would help back then, but the therapist would note how tight his abdominal muscles were from his multiple surgeries and worked him through it. Now, he’s a fierce 18 month old toddler. Pushing anything he can get his hands on… dining chairs, boxes, toy trucks, laundry baskets…and his cherry on top is to ram any of those things in to the poor old dog (who is going deaf). The physical therapist had always been impressed with the quality of Aidyn’s developmental progressions. She could predict when he was about to hit a milestone and eventually he would actually achieve them sooner. He has pretty much caught up developmentally and that’s not calculating in his prematurity. He’s a force to be reckoned with, constantly on the move until nap or bedtime. He contemplates, studies, and plays hard; then he sleeps hard. Knowing that it can be difficult to keep up with him means he’s healthy and thriving well.

The month of July was a flash of activity. Some were good, but mostly tiring and stressful. My mother-in-law and daughter accompanied me and Aidyn to our trip to Boston. The CAIR appointment went very well. Aidyn was able to have another night of TPN reduced, leaving him with only three nights of TPN a week and the rest getting IV hydration. The next day, while I took Aidyn to surgery at Children’s Hospital to have his central line replaced, Alyssa and Eileen enjoyed a day at the Aquarium. They braved the mass transit system alone and did a fine job navigating Boston.

Aidyn had a successful surgery, and what was to be an overnight hospital stay turned out to be a day surgery. That evening you wouldn’t have guessed he’d had surgery. He was busying himself with Alyssa and the toys made available at the home of the host family where we stayed at.

Pre-surgery

Post-surgery

A little more playtime before leaving for the airport home.

Watching the planes before boarding.

The day after coming back home to Arizona, Aidyn was not acting himself. That night he was admitted into the hospital with a fever, was started on antibiotics and was diagnosed with having sepsis a couple days later. He had staphylococcus aureus in his blood stream and his new line! I was worried we would have to replace the line, but thankfully the cocktail of antibiotics given on the first night contained the right drug to beat the bacteria. After four days Aidyn was discharged and went home on 10 days of IV antibiotics, Unasyn to be exact. I suspect the granulation that grew out of control may have been the cause of the infection. Having surgery to replace the line could have made Aidyn vulnerable.

Phoenix Children's Hospital

Toward the end of Aidyn’s Unasyn dose, Aidyn started having new, strange symptoms. He was walking around like a drunken toddler. After talking to the nurse in Boston, we decided to have blood work done. Initially it was thought it could be unbalanced electrolytes, lactic acidosis or a reaction to meds, but instead his creatinine levels were abnormally elevated, indicating possible poor kidney function. Labs were repeated a couple days later and the levels remained elevated.

Waiting to be called back for labs.

Antibiotics were stopped and the local GI requested Aidyn be admitted into the hospital for a 24 hour evaluation. I was not pleased going back to the hospital one week after discharge. After a fiasco in trying to get tests done with uniformed ER doctors, Aidyn was discharged the next day and a follow up for the next week was made with the Nephrologist (kidney specialist). His conclusion was the two antibiotics given two weeks before may have caused Aidyn’s kidneys to sort of have an allergic reaction. So, in the future, we will not ever allow Aidyn to be given Gentamicin and Unasyn together. His creatinine levels did go back to normal. Don’t you love medicine and its side effects?

Just when we thought the drama was over, Aidyn spiked a fever later that night after seeing the Nephrologist earlier in the day. How…why…? It wasn’t expected at all. As a matter of fact, Aidyn was fine all day. He was left with the respite nurse that evening so Joseph and I could attend Alyssa’s meet the teacher night. We came home, relieved the nurse and finished putting Aidyn to bed. As I was finishing up in Aidyn’s room, I noticed he was grunting. When I picked him up he was so stiff, but curled up in a fetal position. He started shaking a bit and I thought he was having a seizure. He was able to make eye contact so we were very puzzled. After about ten minutes, Aidyn relaxed and fell asleep, but then, he suddenly spiked a 102 degree fever. As we all know, we prepared for a trip to the ER. By the time we got to the ER (a 25 minute drive, by the way) Aidyn had no fever. He was acting fine. I hesitated the use of antibiotics, fearing his creatinine levels would go up again and a very possible bacterial overgrowth situation that may result from his good bacteria being wiped out. Well, it turned out, Aidyn had another line infection. It was a different bacteria. We stayed in the hospital eight days this time. You can imagine the nurses were floored to see us a third time in three weeks.

At Phoenix Children's again, a visit with Dad.

Taking a stroll on hospital grounds, hoping to go home soon.

It is believed Aidyn may have been “showered” with bacteria in his blood at the start of is TPN infusion. It may have been hanging out in his line or the line may have been contaminated prior to the hookup of his infusion. We will never really know, but the respite nurse felt terrible. Although we feel we handle Aidyn’s line with great care, we work harder to keep it clean.

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.