Solving the Puzzle

Solving the Puzzle in Boston

America 2014 update

Sorry for taking so long to get a post up. We have had a great and very busy time so far. We also have had some news I’ve had to come to grips with, and has been hard to write about.

We had a couple of days in San Francisco, resting with a little bit of sightseeing. We then flew overnight to Boston, where a great friend, Barbara, who we met at camp last time, who is volunteer, picked us up and drove us to Maine, to the medical conference and camp.
We had a great time at camp sunshine that week. We have learnt so much more from the doctors at this conference about DC, and the progress they have made in research since the last time we were here.
Also met lots more families and made many more connections. This time there was more families from around the world as well as us from N.Z. We now know Americans ,Canadians , Australians and families from Denmark, Netherlands and Ireland. It is such a blessing meeting all these families in similar situations. There we discovered that the FDA has approved two new drugs for Pulmonary Fibrosis.

Our next stop was the NIH in Washington DC. This time we had 2 full on days from 5am starts to 7pm in the evenings. More very thorough tests, including blood tests, mri’s, bone marrow biopsy, ct scans, ultrasounds and seen by a lot of specialists.
Unfortunately I did not have such a good outcome with my lung investigations. We are hoping there is some sort of infection causing this. My oxygen saturations dropped to 88 % on the walking test, suggesting that I really need oxygen when walking around if the Dr’s don’t work out what is causing this.
I started antibiotics and Drs have added a different medicine for the lungs. We had to change going to NY on our morning train, as they wanted to do more tests for my breathing.

We then took the later train to New York City for a couple of days. We had the wonderful opportunity to spend time with the Cornelius family we met through DCO. We went to Intrepid, The Lion King and then to Jersey Boys with Skip and Nancy. We had great time with them.

We then had to travel to Boston a day earlier to see more specialists at Boston Children’s hospital, where they gave their opinions on my results from the NIH. They also agreed that I needed to be on oxygen when I exercised. They showed us how much the lungs have deteriorated on the ct scan over the last two years. If I feel at all like I need oxygen on the plane I must ask for it. I also have to get an oxygen metre to measure my sats regularly so I know when they have dropped below 90. Also I will need to go into hospital when we get home and have sleep measured oxygen sats so they can make sure it’s not dropping while sleeping and affecting the heart. Aaron had this in Starship a few years ago after they worried about six minute walk tests with him. His sleeping oxygen levels were fine, so hopefully mine will be the same.

During this time we also stayed with Barbara again, and got to do some lovely sightseeing and shopping. I also got a oxygen sats meter and used it when we walked along the beach, my oxygen levels dropped to 89% for a short time but then rose to around 93% for most of the walk.

Leave a Reply