Just when we thought that we had a plan to return to Texas, Aiden’s liver numbers have spiked and the past several days he has also been experiencing some internal bleeding from his digestive/intestinal tract, so we are now trying to figure out what is going on.

Late last week, the medical team here came to the decision that (since they cannot identify the cause/source of Aiden’s pain) they would focus for now on trying to identify a more effective and viable long-term method to control the pain, and thereby (hopefully) control some of the symptoms that he is experiencing. Because he cannot stay on the narcotics long-term, they are attempting to replicate his response to the opioids by using other pain medications that are often used in patients experiencing IBS and other diseases that cause severe abdominal pain.

This will be an extended trial & error process, and so we had worked out a detailed plan to return to Texas and continue this process overseen by Aiden’s physicians in Dallas, while the CHB team would continue to provide direction and advise long-distance until our next visit.

As part of this process we had expected to begin weaning the current pain meds last week and begin the transition to the other drugs; however, due to the liver & bleeding issues that have come up, they have held the wean anticipating the possibility of additional testing and the need to continue to protect his lungs so that he is able to handle anesthesia.

Last Wednesday, we met with a hepatologist to follow up on the increased liver numbers. She ordered some additional tests to rule out some concerns and follow-up on possible causes. Based on the results, it appears Aiden’s liver numbers continue to rise and they think he may need a liver biopsy to figure out what is going on. We will meet with his primary care physicians over the next couple of days to determine next steps. Thanks for your continued prayers!

It has been a rough month for everyone. Manish has pretty much been a single parent all month juggling the boys, a job and the household. To top it off, he was sick toward the end of the month with a G.I. bug that has been spreading across Dallas.

Hopefully, May will be more peaceful!

Below is a short video of Aiden walking in circles praying about getting back to the airport, going home and getting a good night sleep.

 

 

Shortly after Aiden & Hannah left for the hospital in Boston, Manish and the twins took a trip to Rochester, NY to visit his parents. This was the twins first trip away from home and they did very well! They thoroughly enjoyed their time with Papa, Grandma, “Oak” (Uncle Sachin) & Aunt Amisha. They have grown so much in the past several weeks and now look like 4-yr olds-such big boys! The pics below are an assortment of the boys playing, at the museum, doing things with family and being silly. All in all, it was a great trip!

Aiden and Hannah are still in Boston. Over the past few weeks, Aiden has had a neural MRI, CT Scan, Gastric Emptying Study, Echocardiogram and various other tests. As always, everything is negative and the CT even shows slight overall improvement (in some aspects) in his lungs from his previous chest CT two years ago. While that is good news and rules out the need for lung biopsies at this point, there has still been no progress in addressing the serious health issues that he is continuing to experience. For the past week and a half, Aiden has been trying several new medications as well as re-trying several drugs that were tried previously, prior to his past couple of surgeries. We will meet with Aiden’s GI doctor this week to come up with a longer-term plan, and also plan to begin weaning the narcotic pain medications this week, which will be challenging, given that he is throwing up so much when the drugs wear off.

Thanks for your continued prayers!

Racing cars on their new racetrack

Having a great time harassing Papa

Grandma watches on

Can’t tell who is having more fun here

Amisha and Evan having breakfast

Oak has fun with the boys

Crushed!

Time to get Amisha

Now they turn on eachother

At the museum

Playing with non-dirty, plastic sand

The butterfly exhibit

As Aiden would say, “sooo beeutyful!”

Uncle Oak, Amisha and Miss O (aka, Sachin’s girlfriend) and the boys

Bears

Brushing a big mouth

It made gushing sounds and scared Evan

Hitting the monsters

Oak plays some games too

Time to….

Remember Slinky?

All aboard

Poor Evan looks so sad

More trains

Time to go shopping

Checkout

Cashier

Don’t overcharge me

What does that spell?

Taxicab

Bill Spiotti cut Papa’s hair, Manish’s hair when he was a little boy and is now cutting the twins hair. Spanning 3 generations.

Grandma reads a goodnight story to the boys