March 2011 - Veritaz Photography; Dallas, TX

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seen at CHB 2.5 yrs ago, so much has changed that many of the tests and assumptions that were made at that time are no longer valid.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….

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!