Aidyn...Little Fire: 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!