Post Line Removal

A lot has happened over the last 5 1/2 months. Aidyn had his central line removed, lost nursing through the state, he had his first real cold, got a stomach bug, was hospitalized for dehydration, and started battling with weight fluctuations. It has been a rollercoaster ride, for sure.
Towards the end of April the whole family flew to Boston for Aidyn’s CAIR appointment. It was an extra special trip because it would be a turning point in Aidyn's care. It was the first time all four of us have traveled to Boston together. We stayed six nights this visit, five of which was with the wonderful family in Brookline. They always make us feel at home.


Flying to Boston

 Aidyn had a consult appointment with Dr. Puder the day after we arrived. Dr. Puder had not seen Aidyn since last September, so he was thrilled to see an active, happy boy playing in the hall upon his arrival. He took the time to go over Aidyn’s progress, weight fluctuations, future cares and of course, down to earth chat. Dr. Puder was happy to make the suggestion to have the central line removed. He checked out the granulation tissue growing out of the CVL site and told us the surgery would be easy. Dr. Puder was just as excited as we were to have the CVL removed. He said that typically, in a case like Aidyn’s, TPN would most likely continue for another year or two. It was a very enjoyable appointment.

We reminded Dr. Puder how grateful we were to have him in our lives. He remembered what we told him when we first contacted him over two years ago by recalling our story. How Aidyn’s initial doctors told us he most likely wouldn’t live past the first surgeries and if he did, that his quality of life would be poor. How transplant was the only option for survival. We were told several times we could remove life support and let Aidyn pass away in our arms. And when Aidyn fought hard and was nearing discharge, we were encouraged to put Aidyn in a hospice home for terminally ill children. Instead, after discovering Omegaven, we took Aidyn home and boarded a commercial flight to Boston five days later. And the rest is history. We were probably the most troublesome parents for those doctors where he was born; I hope they saw that we were the best patient advocates they had ever come across. And one day, hopefully soon, I will send an update letter to that hospital, directed to the NICU. They must know that each patient deserves any and all treatments that are available out there before giving up.

At the time of clinic in April, Aidyn weighed 10.2 kg, or 22.4 lbs. But before clinic, Dr. Puder removed the CVL and granulation tissue in surgery.

Pre-surgery, still a little tired, especially with the three hour time difference.

 We were excited that the time was near to be able to give Aidyn a real bath! Aidyn did well during and after surgery. Within 30 minutes of waking up we left the hospital for lunch across the street and headed to clinic after that. The team was happy to see how far Aidyn had come. There were smiles all around. The plan was to increase food and fluid intake and come back in two months to be sure Aidyn was progressing.

The next few days were spent going to the Children’s Museum, the Aquarium and and spending time with my brother and sister, and her family.

Children's Museum

The Aquarium

The day before leaving Boston was Easter Sunday. Our host family invited us to Easter service and Easter dinner. Their three children, two teenagers and preteen, even set up an Easter egg hunt for Alyssa and Aidyn. They had so much fun, especially Alyssa. The home we stayed in was built in the 1890’s and is three floors with a finished basement and finished attic. Alyssa loved going up stairs from the main floor to continue the egg hunt.

Easter with the Mills.

Our trip to Boston in April was an enjoyable one. It was a start of a new life without a central line for Aidyn, for all of us.

It was a beautiful Easter Sunday. We enjoyed a walk and nearby park.

The Revolving Doctor's Door

Within days of coming home from Boston in April, Aidyn’s nursing from the state was dropped. I didn’t even get a phone call, I found out from the nurse when I called to set up the next visit. She thought I had been notified and felt terrible. I thought we would get at least a couple weeks to adjust, but not so. It was only 16 hours a week, but it sure was a great help; I could run errands or just catch up on laundry. Then, a few days later, Aidyn spiked a fever. I didn’t know if it was related to having surgery or being exposed to everyone in the hospital or the airplane. His fever topped at 103 by the time we got to the doctor’s office. Since there were no symptoms at the time, we were instructed to use Motrin and Tylenol up to four days as long as there were no other major symptoms. By the weekend, he was having a runny nose and cough. I almost took him in to the hospital for dehydration, but he seemed to do better after some rest. Hydrating Aidyn was tricky, he wanted more than he should drink at one time, causing more stools. I started giving Aidyn electrolyte pops to slow down his intake, and it helped. We avoided the hospital. Seems Aidyn just had a cold. I quickly learned fevers can’t be taken lightly without having the option of giving IV fluids, so I have to be sure to give extra fluids at the first sign of them.  



 Five days after line removal.                         Getting over his cold.    

Aidyn saw his hematologist May 3rd and we got the go ahead to stop giving him Lovenox injections. He was on Lovenox because of a blood clot he had a couple weeks after birth and that could have posed a problem with his PFO, a hole between the two chambers of his heart. It usually closes before the baby is born. I had given him over 1000 Lovenox injections already and was so happy to stop giving them. He still has bruised thighs. She advised us to check with the cardiologist to see if he still has a PFO. I have yet to set up the appointment with the cardiologist. It will happen but I would like to take a break from seeing more doctors right now.

First real bath. He wasn't sure about the water being poured down his back for the first time.
Much different than a sponge bath. Bath time is so fun for him now!

Aidyn’s appointment with his local GI was set for the next day, but unfortunately we didn’t get to see her. While I thought we arrived on time, we were a half hour late. I'm not sure whose mistake it was, but I thought the doctor would have worked Aidyn in since she had not seen him in three months and he had many changes to his care. We contemplated on finding another GI as it wasn’t the first time we felt let down. In the end we opted to stick it out with her because she has all his history and has shown her cooperation with Boston.

Backyard fun, a walk, Mexican food and a snuggle for Mother's Day.

Aidyn finally had his two year check up with the pediatrician the second week of May. His weight dipped to 10.02 kg, or 22.09 lbs. According to the NP in Boston, it plotted him below the 3rd percentile. It was most likely from the extra stooling the week before. He caught up on his vaccines, except chicken pox. Two days after getting his vaccines, Aidyn started with low grade fevers and then major stooling. I made sure to give extra fluids, but it was not working. He became more focused on drinking than eating, he looked tired, his mouth was dry and he looked thin. Four days after the vaccines I decided to bring him to the nearest ER at John C. Lincoln. Normally we would have taken him to Phoenix Children's Hospital, which is a 40 - 45 minute drive, but this hospital was only 15 minutes away. I was nervous because they had no history on Aidyn. They did a wonderful job and made contact with Boston so everyone could be on the same page. We had never been in a hospital where all the rooms were made for one. It was quiet and with no residents. It's too bad they don't have a specialty in pediatric gastroenterology. If Aidyn still had his line we would have went to Phoenix Children's and never found out what a nice hospital John C. Lincoln was.

 

Getting much needed rest before being discharged home.



Looking thin.

Anyway, Aidyn's CO2 was at 12 and his weight went down again to 9.6 kg, just over 21 lbs. He was admitted for dehydration and spent the night getting fluids and resting his gut. He had a rough night and was very agitated. Eventually he fell asleep. The next day we spent most of my birthday waiting to see if Aidyn would be able to go home. Labs revealed his CO2 went up to 19, his BUN decreased to 6 from 30 (a high number indicates dehydration) and he was negative for the Rotavirus that was going around. He started feeds again and was discharged so he could continue getting better at home. His weight at discharge was 10 kg, 22 lbs. A few days later, stool cultures resulted in nothing. It’s assumed he caught some sort of virus.  Aidyn finally saw the GI later in the week and his weight went down to 9.85 kg, 21.7 lbs. His stooling wasn’t under control yet, so in an effort to help, she recommended Aidyn take Imodium AD. We talked about starting Flagyl again to help with what may be bacterial overgrowth, as well as start probiotics. We did the Imodium AD for just a couple days and Aidyn’s bowel movements went back to three to four a day. The doctor gave us samples of Florastor, a yeast based probiotic, to try. It seemed to help for a while, but I stopped giving it to Aidyn about a month ago, as it looked like he may have been getting thrush from it. He has since started Culturelle. We will most likely cycle Culturelle and Florastor every few months.

 

Two weeks after the appointment, Aidyn started increasing weight, again. He was 10.17 kg, 22.4 lbs, the first week of June. We continued to check his weight each week.

 

 

Back to his eating antics.

During the month of June Aidyn’s weight slowly increased. By the time we went to CAIR at the end of June, Aidyn weighed 10.4 kg, 22.9 lbs. Recommendations were made to start Flagyl based on gassy symptoms and an abdominal x-ray he had in Boston. It showed dilation in his small intestine and colon. It indicated colonized bacteria. We also stopped goat’s products since he has a milk allergy. His Elecare increased to 36 calories per ounce, up from 30 calories per ounce. I started using a sugar-free powdered electrolyte drink called Ultima Replenisher for Aidyn for hydration. I thought the sugar in the Pedialyte and even the home made ORS was not being well tolerated by him. Sugar and salt are needed to absorb electrolytes, but it in my mind the sugar was making Aidyn have looser stools. The dietician said it should be okay for him to use this product since Aidyn has most of his colon. It uses a non-GMO maltodextrin to help the electrolytes absorb, and it’s sweetened with Stevia leaf and Lo Han Guo fruit extracts. We tried Ceralyte and it works great since it is rice-based, but it’s expensive. Also, it doesn’t make good popsicles. With the Ultima I can make popsicles to slow down Aidyn’s intake. It doesn’t taste bad, especially cold. Overall, the trip to Boston was helpful. The next appointment didn’t have to be scheduled for another four to six months! We go again November 3rd.

I’ll end this post with more pictures!

 

 

A much needed haircut, very handsome.

More updates to come soon!