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Category Archives: Family

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Still there…

April 30, 2011 – 10:58 pm

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.

By Manish | Comments (1)

First trip away…

April 17, 2011 – 12:14 am

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

By Manish | Comments (1)

Tests, tests, and more tests…

March 31, 2011 – 8:59 am

After long days at the hospital on Tuesday & Wednesday, we now have a bit of direction, although not necessarily what we expected (or wanted)! We met with a number of Aiden’s physicians and came up with the beginnings of a plan for this visit. Aiden’s doctors in Texas have strongly expressed to us (and to the doctors at CHB) the urgent need to find some answers and solutions to the ongoing issues which seem to be causing the aspiration and respiratory distress.

With this in mind, and knowing that Aiden cannot continue to experience these acute events without serious long-term repercussions, the doctors here in Boston have determined that we basically need to start over again and re-examine everything. In particular, they want to begin that process by taking a closer (and possibly more invasive) look at Aiden’s lungsac and heart, since the predominant focus has previously been on his GI and ENT systems. Since Aiden was first seen at CHB 2.5 yrs ago, so much has changed that many of the tests and assumptions that were made at that time are no longer valid.

That process started this week with x-rays, cultures, and a huge amount of blood work. We will continue it next week with a high-resolution CT of his lungs, echocardiogram, meeting with cardiologists, and possibly some time in the OR to obtain a biopsy of his lung tissue, as well as some other possible testing in the next couple of weeks. In the interim, the doctors are adding and adjusting several new medications and want to try a few (rather obscure) medications that may provide some relief of both his GI and respiratory symptoms. Because of Aiden’s paradoxical response to most pharmaceuticals, this is always an interesting process which we hope does not result in any serious reactions. Results from the tests done last week have all been normal.

There is a possibility of another option which has opened up and may allow us to obtain another set of opinions in the next several weeks, but would mean some difficult decisions. We really do not know what to do and would ask you to pray with us for clear direction as to what would be best for Aiden.

On another note…we are anticipating an “April fool’s Nor’easter Snowstorm this weekend in Boston…yes, my Texas friends, you did read that correctly: a SNOWSTORM in April. Ah, the joys of the Northeast….

By Manish | Comments (1)

Still not back to baseline

March 16, 2011 – 8:39 am

Apologies for the (very) long overdue blog update…there has been so much going on, where to even begin?!? First, let me share the best news (to us, at least!): after follow-up chest x-rays last week, we have confirmed that the air in Aiden’s chest is completely gone, and his lungs are looking significantly better. That’s huge! He is still on continuous O2, and requiring a higher O2 rate when he is active and moving around. Although we have done a couple of VERY brief trial attempts to take him off the O2 for short periods of time, we know for certain that he simply is not ready for that at this point…and we don’t want to push him too much right now, because we really need to protect his lungs so that they will continue to heal (when he cannot breath or catch his breath, he throws up).

In the meantime, we are continuing to deal with unknown GI issues. About 2 weeks ago, Aiden woke up ~ 3 AM sobbing and holding his tummy directly over his g-tube and telling us that it hurt. Since that time, he has continued to steadily complain about his “tummy” hurting, and has been sleeping with his hand over that site, ‘guarding’ the tube. Even changing the dressing around the tube (something we do on a daily basis) seems to cause a huge amount of pain. After trying all of the obvious causes associated with the g-tube, with our doctors’ help here, we have cultured and tested and imaged and done everything we can to figure out what is causing this, but of course (as usual with Aiden), none of these have shown anything. Unfortunately, whatever is causing the problem is also seems to be making him very nauseous and he is throwing up significantly more than normal, both volume and frequency.

Although we had almost completely weaned from the pain meds, we had to go backwards and increase the dosage and frequency in order to help limit the vomiting and protect his lungs to allow them to heal (Aiden does not throw up when he is on narcotics consistently), while hopefully helping with the pain as well. The downside to that is that the pain meds Aiden is currently on make him very angry and wild. The next step is to do an endoscopy, which we were unable to do until we had clearance from the pulmonologist that Aiden’s lungs were improving to the point that he could handle going under general anesthesia. We are hoping that they will be able to figure this out and scope him while he is at Children’s Hospital Boston (CHB) next week…which brings me to our current undertaking.

Since Aiden’s last visit to Boston mid-2010, he has had appointments scheduled for follow-up and metabolic testing that could not be done while we were up there last year. Coincidentally, these appointments are scheduled beginning next week (03/20). We have been in contact with the doctors in Boston throughout this past hospitalization, attempting to address some of Aiden’s current issues, and have been working with them to schedule the additional testing, procedures, etc., that will be needed while we are there to hopefully (1) help figure out what is going on with these GI issues; and (2) why he is still aspirating and re-evaluate whether it is safe for him to take anything by mouth.

Prior to the past couple of months, this was the first time that Aiden had even been well enough to consider “normal” modes of transportation, and we actually thought he might be able to fly up to Boston commercially, but of course, that is no longer a consideration at this point. Given the recent episode with multiple areas of air in his chest, healing aspiration pneumonia, O2 requirements and GI issues…his doctors felt that the only safe mode of transport for him at this time was an Air Ambulance. We are hoping and praying that this trip will only be for a couple of weeks. Obviously, we will do whatever we can (and for however long it takes) to help Aiden, but really, really, really would like to get everything taken care of in a couple of weeks, and not be stuck up in Boston again for months. So, that said, please help us pray for:

(1) safe trip for Aiden with no complications
(2)his lungs to continue to heal
(3) testing, procedures to go smoothly & his lungs to handle the general anesthesia without any complications or setbacks
(4) answers that will help us treat and/or correct whatever is causing these issues
(5) All 3 boys to handle everything OK;
(6) sanity, strength, wisdom, etc….for Hannah & Manish!

Thank you for your continued faithful prayers and all of the sweet notes, cards and words of encouragement. Your kind thoughts and continued prayers going up on Aiden’s behalf have made such a difference, and certainly help to keep us going every single day.

Loving their cars!

Getting ready to ‘race’

Ethan won

Evan tries to figure out why his vehicle was so slow

Time for a foot race

Trying to pole climb

Baffled

Almost!

Simply adorable!

Ethey…smile!

Evan is climbing

How did you get out of your stroller?

We let him walk a little (with close supervision)

He even got to slide

Shortly after crawling, he threw up all over the place

Almost got all three of them to look

Loving life

Classic.

My Booooo

Flying high

Everyone smile!

Aiden, don’t fall out!

The trips.

Time for a snack

They enjoyed this park

Uncle Tim rocked the ‘tire’ swing

Evan is enjoying his snack

Ethan likes Kaelyn’s shoes

He also likes watching them play basketball

He wants in!

By Manish | Comments (1)

Back Home (hopefully to stay)

February 19, 2011 – 10:38 am

Finally, Aiden has returned home! He still has extensive aspiration pneumonia in both lungs and air throughout his chest and around his heart; but it appears to have stabilized and does not seem to be getting any worse. The subcutaneous air and swelling in his neck and upper chest has improved slightly.

His O2 requirements seem to have stabilized as well, and we can certainly maintain his stats with O2 at home and watch him just as closely, without having to expose him to all of the nasty stuff that is going around in the hospital. There is really nothing that they were doing in the hospital that we cannot handle at home (given that we have pretty much established our own home hospital/medical supply co. over the last 3 years!).

The hospital docs were somewhat hesitant about him leaving as they wanted to keep him at least through next week. But we felt that this is really best for Aiden and his pulmonologist agrees. We know that he is so much happier and will heal more quickly at home in an environment where he is more relaxed & comfortable, and can get some much-needed rest.

We will continue outpatient x-rays & blood work to monitor the air in his chest and his WBC counts in the days and weeks to come. His doctors are still concerned that there is something else brewing–probably GI related–but nothing has shown up in testing and there is not much we can do at this point except watch and wait.

As you can imagine, Aiden is ecstatic to be home, with Daddy & his brothers, and in his own bed. Thank you for your continued faithful prayers and all the words of encouragement; we are so thankful for each of you and the many prayers that we know are going up on Aiden’s behalf which have made such a difference. Please continue to pray that Aiden’s body will heal without further respiratory or GI complications, and that his medical team will have wisdom in knowing how best to keep him comfortable and address some of the resulting/associated health issues.

Glad to be back!