Just when we thought we might go a whole year without traveling for something medical, Seatlle Children’s Hospital called. They said the technology had just been developed to do a lymphangiogram on someone as small as Truitt, and given that we still have so many unknowns about why he has this condition, he was a prime candidate for the procedure. Oh, and they wanted to see if we could be there in 3 weeks!
Well, Seattle graciously postponed the procedure an extra two weeks to allow us time to get the other kids taken care of at home while we were gone, and it also gave them more time to get us some other appointments while we are here. It’s been a whirlwind of a trip, but the procedure seemed to go well yesterday.
What they did:
For the lymphangiogram, they performed an ultrasound of Truitt’s groin the day before the procedure to verify that he had at least one lymph node on either side that was large enough for them to insert a needle into. Then he had to fast and prep like he was going for surgery (that was by far the hardest part!) because they had to put him under full anesthesia for the entire procedure. Once put under, they inserted needles into a lymph node on either side of his groin, and began administering a contrast dye. Once the needles were secured, they moved him to the MRI machine where they followed the die as it travelled up his body, hopefully into the cysterna chylie, and back into his bloodstream. The doctor told us thousands of images were taken, so it will take a few weeks for all the various doctors to pour over all the images and interpret them. To date, Truitt is only the 3rd patient to receive a lymphangiogram at Seattle Children’s, so they will have many different physicians looking over his images. They will be looking for abnormalities in the path that his lymph took to get back to the bloodstream. However, everyone’s pathways are somewhat different, so they are more looking for blockages or masses where the lymph congregates too much. Given his history of a believed chylothorax at birth (the thoracic duct dumping lymph into the pleural space of his lung), I am hopeful that they will be able to see his thoracic duct in the images. However, we have been told the chances of actually seeing it are low, even in an adult, but they will be able to see if it is functioning correctly. Truitt’s team of doctors here is not expecting to find too much on this test given the fact that he has no pain or symptoms of other organs failing. However, one of the baffling aspects of Truitt’s overgrowth/lymphedema is that it is more or less equally affecting both sides of his body. Normally this sort of thing would affect one limb, or one side of the body. The fact that it is bilateral in the legs makes us wonder if the source of the issue is not further up in his body. He has also recently had a few more blebs pop up on his trunk, and these are generally believed to be indicative of some lymphatic malformation going on underneath. The ones on his trunk are nill compared to what are on his feet and legs, but we want to make sure we are not missing something more serious underneath.
On top of the lymphangiogram, they also performed a MRI on his legs. Truitt has had two MRIs over the last two years with opposite results. The first one showed that he had no tissue overgrowth, only lymphedema. The second one a year later showed only tissue overgrowth, no lymphedema. The explanation for this so far has been that the overgrowth was there the first time, but that they couldn’t see it because of the fluid, and the MRI is proof that we are doing an excellent job in keeping the lymphedema under control with all the massage and compression wrapping. So, the take away was keep up the good work!
However, earlier this summer we reduced the amount of time spent on his lymphedema care of wrapping and massage from 13 hours to upwards of 8 hours a week. This appears not to have changed his symptoms on the outside, which makes us wonder if the amount of treatment is necessary, if at all. So, this time around, the doctor had us hold off on all his lymphedema treatment for 5 days before the MRI. Since coming home from the NICU, Truitt has never gone more than 36 hours without some form of treatment on his lymphedema. So needless to say, it was a glorious 5 days of freedom! But I was pretty sure by the time we arrived for the MRI his feet would be firm and swollen, and the MRI would confirm that this treatment is absolutely necessary. However, from the outside I have not noticed hardly any increase. His feet have been obviously more firm at night (indicating swelling), but by morning they have been nice and soft again. So, now I am anxious to hear what they see from this MRI, and trying to not got my hopes up too much for a smaller treatment regimen!
We also met with the doctor here in Seattle that would oversee the administration of a medication he may or may not be a candidate for in the future, depending on the results of his last round of genetic testing. The possibility of this medication has been a point of concern for us as very little is known about it other than it is an immunosuppressant. This appointment turned out to be a very encouraging one! We have a much better understanding of how the medicine works and the specific reasons it would be administered. We also learned that though it is an immunosuppressant, it is not as awful as we had expected it to be. We also learned that he is less likely to qualify for it, so for now it is something we can rest our minds about, unless he starts to develop symptoms like pain or reoccurring infections in the area. So, once again we are on our way home to wait for a phone call with test results!
We are so grateful for all the love and support we have continued to receive from you all as the years are now rolling by after Truitt’s release from the NICU. We are truly blessed!
- We all survived Truitt’s 6 hour+ fast.
- The doctors felt like they were able to get all the images they needed.
- My mom was able to come again and stay with our children while we were gone.
- Truitt is walking, running, talking, problem solving, and playing sports with his siblings—doing things far beyond the expectations he was given at birth.
- That the results from the lymphangiogram would be definitive.
- That the lymphangiogram would show us something helpful, but that isn’t ‘bad news’.
- That the MRI of his legs would be clear in answering whether or not he truly has lymphedema or not.