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.

Doing well at home

Seeing as Aidyn had been tolerating his feeds well and having no problem with bowel movements, he was discharged from Children’s Hospital Boston on September 26th. Upon discharge, Aidyn weighed in at 11.3 lbs (we tend to go by the pediatrician scale at home). His labs indicated his bilirubin levels were normal: total was 1.0 and direct was .3!

To celebrate, we had dinner at Applebee’s down the street from the host family’s home. Joey’s good friend flew out from Indiana a few days prior for support and to meet Aidyn for the first time. He joined us along with my brother, Bert, who lives in Boston. We had a nice time and Aidyn enjoyed looking at all the people and decorations.

Taking in the scenery.

The following day, we flew home to Arizona. Aidyn was a perfect baby in flight. He slept most of the 5 hour and 45 minute trip. Thank goodness for non-stop flights. We have since settled back in to the swing of things at home. Alyssa was a thoughtful sister and bought Aidyn a pooh-bear, a book and interactive nursery rhyme book with a gift card she received. She’s transformed into a happy big sister instead of a worried and resentful one. It helps that she has wonderful grandparents that come and stay with her while we go to Boston. She has been through a lot emotionally and has handled herself better than we expected.

Last Tuesday I increased Aidyn’s feeds back up to 20cc’s per feeding and it seems his bowels are slowing down a bit, a good sign. To my surprise, Dr. Puder gave us a call this morning to check on Aidyn’s progress. This man is always thinking of his patients and never sleeps! He’s amazing!
Yesterday we had our first visit from the new home health agency. I am pleased with the nurse’s professionalism and her nursing skill. I don’t normally do the central line dressing changes myself, but I did yesterday with the nurse’s guidance. She likes to be sure the parents can do them and was happy with how well I did. I told her I wouldn’t mind if she did them most of the time since I was happy with how diligent she was using sterile techniques. Aidyn weighed 11 lbs 8 ounces and his vitals were all good. The nurse was pleased with Aidyn’s surgical incision. She commented that he’ll have very little scarring…thanks to Dr. Puder.

Early Intervention will be starting services next week to help Aidyn catch up to the developmental level of his corrected age. They feel he should receive services because he has been through so much but he should catch up with no problem. We’ll work on tummy time and other therapies to increase his upper body tone. This will help him achieve better tracking, the ability to sit using his arms and adaptive development.

Since being back home, we’ve noticed how much more comfortable Aidyn is along with better, quality sleep. I hadn’t realized how bothersome the ostomy was for him. It’s so nice to hold Aidyn without limitations. Cuddles are much more fun now. Aidyn seems happier, too.

Waiting to be discharged

We are on day 4 in the at Children’s Hospital Boston. We hope Aidyn will be discharged tomorrow so we can all fly home together on Sunday. Aidyn’s recovery from surgery is amazing. He was on morphine for less than 24 hours and had 3 doses of Tylenol afterward. Yesterday he was starting to be his old self. Not very many smiles, but very curious and awake.

He also started feeds yesterday. He started off with 6 cc’s of unflavored Pedialyte every three hours. Aidyn wasn’t thrilled about the taste. So, at his second feeding , he had grape flavor. Much better. At the fourth feeding, it was changed to Elecare formula. Aidyn sucked it down quick. After a couple Elecare feedings, the amount was increased to 9cc’s. He slept well during the night, despite waking him up to feed. By morning, the doctors agreed to increase the amount, again, to 12 cc’s. This time, he would have 12 cc’s 6 times a day, in order to build up to the 20 cc’s he was having before the surgery. He may not get to 20 cc’s a feeding before discharge, so I will continue to do that at home, as long as he tolerates it the way as he has been doing. Once Aidyn gets up to 20cc’s, we will increase the feeds by 5cc’s weekly and keep in touch with the dietician each week.

Aidyn did have a couple bouts of crying yesterday evening, probably due to cramping or gas. Dr. Puder said it’s like having a bowel movement through a straw. The colon needs to stretch out. Since then, Aidyn’s cries seem to only be related to diaper rash. We are putting a thick barrier on his bottom until his skin gets used to it. He’s doing very well with his bowel movements.

Dr. Puder wasn’t in today, but has been calling in to see how Aidyn’s doing. We are proud of Aidyn. The nurses enjoy having Aidyn as their patient and the doctors are happy with Aidyn’s progress.

We're back in Boston

It’s follow up time already with Dr. Puder and the CAIR clinic. We flew in to Boston Wednesday, September 16th.

Aidyn's always a good baby while flying.

The CAIR appointment was on Thursday. The team was very pleased and excited to see how well Aidyn looked and had grown. He weighed in at 11 pounds 6 ounces. His corrected age put him on the growth chart between 3% - 5% babies his age! And his head put him at 50%. Labs were done with normal results. His dressing to his central line was changed due to some seeping from the skin. It appears he had some sort of allergy to the dressing or the skin disinfectant used when he was in Phoenix Children’s hospital.

Friday was pre-op day. We finalized signatures for anesthesia, finance and had vitals done. This was all for Aidyn’s upcoming surgery he had today.

Waiting for the train to the hospital.

The end of a long day, and still happy.

I changed Aidyn’s ostomy bag one last time yesterday evening. At least I tried. I had to change it again right after I did it. I kept thinking, "Just one more day."

Today, Aidyn did well during surgery to reconnect his small and large intestines. Dr. Puder found the end of colon and took down the stoma. Dr. Puder had to remove a small bit of colon because it was closed and blocked. Since Aidyn’s small intestine is short, he will have watery stools. Dr. Puder checked Aidyn's liver while he had the chance. It was still dark, but soft. A good sign there's no scarring. In time, it should return to a pink color. We have a good feeling Aidyn will recover from surgery nicely. His pain is being managed by morphine or Tylenol and he's resting well for the most part.

In recovery, trying to suck his fingers.

What a big milestone for Aidyn. We hope this reconnection will help his small bowel to adapt better.

Back at Home

Aidyn is 4 1/2 months old already?! That’s right. Aidyn is going to be 5 months old mid September.

After coming home from Boston August 2nd, we’ve been busy with appointments, insurance phone calls, bills and daily life. I would never have thought I’d be away from my family for so long. Alyssa has been getting used to having both me and Aidyn back at home. She wasn’t sure how to act around Aidyn at first, but now, she’s right there giving him his pacifier when he cries.He loves Alyssa. You can tell by the way he looks at her and babbles to her. He's right at home. His development is getting better. Socially, he's probably ahead of most babies, very friendly. He's finally grabbing things and putting them in his mouth. His neck control is very good and has alwasys been since he was a couple months old. He can't roll over yet or push himself up due to lack of tummy time. Once the ostomy is gone (Sept. 21st) I think he will catch up quickly. We are still going to use Early Intervention Services. His first appoitnment is this Thursday.

Aidyn has finally had his follow up doctor appointments since his birth in Arizona. He’s seen the pediatrician three times. His initial appointment with Dr. Wallace he weighed 9.4 lbs, the second 9.10 lbs and the third he was 10.6 lbs., and that was a week ago yesterday. Almost 3 weeks ago, Aidyn had his first appointment with the Pediatric GI, recommended by the doctors at Children’s Hospital Boston. Dr. Ursea has had one patient treated with Omegaven and is familiar with the protocol Boston has with Omegaven. For now, the Boston CAIR (Center for Advanced Intestinal Rehabilitation) team will be the main manager of Aidyn’s care, but in working with Dr. Ursea. We followed up with Hematology, also. Dr. Shaw feels Aidyn may not need to be on Lovenox anymore, but will discuss it with his colleagues. For now, he continues the low dose of Lovenox injections twice a day. We will follow up with the Cardiologist on the 12th and hopefully we’ll learn that Aidyn’s hole in his heart is closed. On August 18th, we had labs drawn and learned Aidyn’s direct bilirubin is at 1.1. Aidyn continues to do so well. This past Friday, Aidyn had a consultation with Dr, Notrica, a surgeon recommended by Boston as well. He actually knows Dr. Jaksic, one of the Boston surgeons. We liked him a lot. He is impressed with the positive results children have been getting with the Omegaven treatment. He agreed to take Aidyn on if we are in need of a surgeon in Arizona.

Well, that last appointment brought us to where we are now, Phoenix Children’s Hospital. While having vitals taken before the appointment with Dr. Notrica, his temperature read 99.4. That normally is not a fever for concern, but while on Omegaven it is. After calling Danielle in Boston, we were told to get labs done and head to the ER if Aidyn’s fever climbed or there were abnormal lab results. After the appointment, we strolled over to the GI office to get labs ordered and had them done in the office through Sonora Labs. Poor Aidyn had been stuck a few times before the IV team technician ended up dripping the blood into vials. (I want to add, while waiting for the order, the GI nurse retook Aidyn’s temperature, and it was normal.) Sonora said we wouldn’t hear back until probably Monday, unless results were abnormal. In that case the GI doctor would be called. Well, we heard nothing during the weekend and Aidyn behaved and looked healthy as normal, with no fevers. We got a surprise call from Alexis in Boston. She was double checking to see if we were in the hospital getting antibiotics started. What!? She happened to go in the office on the weekend and saw the fax. It read GRAM POSITIVE COCCI IN CLUSTERS. How did we not get a phone call? Thank God for Boston. Turns out the lab never called the doctor here.

It was madness getting packed for the hospital, diaper bag, TPN supplies, Omegaven, phone numbers…we came to Phoenix Children’s Hospital Sunday evening and by 9:30 p.m. we had a room. Antibiotics were started after getting another blood drawn from the central line. Luckily, we had no problems using Omegaven in the hospital. As a matter of fact, the staff was curious about it and Aidyn’s story. Aidyn is doing his work around here wowing doctors and nurses of his good health. I credit Omegaven. Hopefully someone around here will want to learn more about it and get it here. The good news, we will be going home this evening after receiving the last dose of antibiotics. The culture here at the hospital was negative and the culture from Friday has been identified as a negative staph bacterium, most likely a contaminant from Aidyn’s skin. Finishing the dose of antibiotic is for safe measure even though Aidyn has been great the entire two days here. I’m looking forward to going home. Hope we never come back here.