Friday, April 9, 2010

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.

Waiting for dinner to start.
Meeting Aunt Jen for the first time.


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.
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.