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.