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.