On today’s agenda: blood draws (17 tubes for Eddie, 15 for Rick, 6 for me), DEXA scans (Rick and Eddie), History and physical (Laura), allergy testing (Laura and Eddie), pain and palliative care (Rick and Eddie). It was a full day, but felt a little more relaxed.
Today’s discoveries: 1. That’s a lot of blood. Especially for a fasting test. Kudos to NIH for having plentiful pastries, fruit, coffee, and juices in the lobby area afterwards. 2. DEXA scans are nothing to fear. Totally painless imaging of the bones. Eddie thanks our doctors for having one test that doesn’t hurt or cause unnecessary stress. 3. All medication prescribed and distributed at the NIH is FREE!!! I walked to the pharmacy and picked up numerous allergy and asthma medications for us, gave my signature, and it was like freaking Christmas! I walked away with a shopping bag of medications. Tah dah!!!! That makes the trip worthwhile. Be warned: you are now speaking to a total proponent of government healthcare. People, this is a good idea. 4. Morphine causes you to itch. A lot. See how red my arm is in the picture. That’s a combination of histamine and morphine causing that.
5. Morphine ignites mast cells which release histamine which causes the itching. 6. People with Loeys-Dietz Syndrome have more mast cells than the average person — even the normal, highly-allergic person like me — so researchers believe that is why those with LDS have a higher rate than the general population of food allergies and allergies in general. 7. Eddie is allergic to pretty much every allergen tested, which is not surprising based on his history or what we know about LDS. 8. Between the LDS and my screwed-up highly allergic immune system, Eddie had virtually no chance of a life without allergies. 9. Acupuncture is recommended to help Rick and Eddie manage pain and relieve stress. 10. Everyone feels quite certain Rick has sleep apnea. A sleep study needs to be scheduled. 11. The Children’s Inn loans umbrellas to guests. Next to free medication I could never have afforded at one time, that is the most exciting thing today. 12. Albuterol is not the first inhaler of choice for LDS patients because of its effect on the cardiovascular system. However, much like epinephrine, this is theoretical. No one has ever had a catastrophic cardio event from using an epipen of albuterol. Therefore, we should not be afraid of using it on Eddie if there is a need.
Our schedule for tomorrow — our last day at NIH on this trip — is full, as you can expect. We will meet with Dr. Pam to summarize everything and create a plan moving forward. We also have squeezed in a quick visit to the ENT for Eddie as we suspect he has an ear infection. Lovely.