Mason’s Journey has taken us to Denver!

I am going to do my best to keep everyone as updated as possible during our week here in Denver. With so much going on I’ll try to be concise and not stray to the path of information overload…no promises though….I can get carried away. So, lets get to it!

I want to start by saying how grateful we are to have all the loving support of our family and friends. I am so grateful to my dad for coming to Tulsa to stay with Jackson while we are in Denver.  Leaving Jackson was difficult but I know focusing on Mason is very important this week. We are lucky to be able to do all that we are doing because of the amazing family and friends we have!

          Sunday afternoon we hopped on a flight to Denver. We had Mason hooked up to a pulse oximeter during the flight and pretty much as soon as we started reaching altitude his stats dropped.  Mason’s oxygen saturation is pretty steadily at 94% in Tulsa so he has never required oxygen. His saturation dropped to the mid 80’s so on the oxygen went. I have to say I was quite impressed with how well he did for never having worn oxygen before, he tolerates the cannula very well. Other than a little turbulence the flight was uneventful and enjoyable.  Mason has continued to be on oxygen 24/7 while here in Denver (due to the elevation) and is adjusting well.

Mason admiring his stats mid-flight

            Monday morning we headed across the street to the beautiful Children’s Hospital Colorado. The hospital is only five years old and is absolutely amazing. It truly is beautiful both inside and out and the amenities and staff are wonderful.  We were greeted by our welcoming coordinator upon arrival. She was so very sweet and she took us to our fist appointment. She had a nice arrival bag full of goodies; including a super soft bear for Mason. She will meet us downstairs every day to show us to our appointments and she offers to plan visits to the zoo, aquarium and other locations. Maybe she does this for all patients, but I’m just guessing it’s because Mason is so stinkin cute and special! Honestly though, the hospitality of this hospital is out of this world.

            Our first appointment Monday was with Dr. Deterding.  She was exactly what we expected after doing our research; kind, caring, knowledgeable and passionate about chILD.  She feels that his case presents itself in a way that is very typical for NEHI.  She believes the infant pulmonary function test (iPFT) scheduled for Tuesday will follow a “pattern” she sees in NEHI patients and the biopsy Thursday will hopefully confirm.  Her goals for this week’s visit is to reach a diagnosis, develop a treatment plan going forward that gets him off his steroid and to address the aspiration issue. The first two she will take care of. The aspiration issue she wants an Ear Nose & Throat doctor to assist with.  We meet with the ENT Tuesday.  Our appointment with Dr. Deterding was great and we are so blessed to have her on Mason’s team and we look forward to continuing to work with her.

            Our second appointment Monday was with the surgeon that will be performing Mason’s lung biopsy.  The surgeon was very nice and I am extremely confident in his ability to perform, he does this quite often. I would be lying, however, if I said I was “comfortable” with the procedure. I know they do this often, I know we are at an amazing hospital, probably the best one to be at….I still don’t like it. First they will look at Mason’s CT scan from December to pick where they will sample. Two samples about 2cm each will be taken from Mason’s lung. There are three incisions; one for the scope to observe and navigate and two for tools for the actual biopsy. The lung will be deflated for the biopsy then re-inflated with the scope still in place to make sure it all looks ok. Immediately after, and again the next day, an x-ray will be taken to check on everything. The pathology for the NEHI diagnosis should take less than 48 hours. This procedure has my anxiety level through the roof already; Thursday is going to be tough.

            Tuesday we went to meet the ENT in the morning.  We discussed Mason’s issue with thin liquids and how he never actually showed aspiration on a swallow study. The ENT will go in with a scope Thursday and look for a physical reason for the aspiration. There is a chance that he has a laryngeal cleft. If he sees this he will spray a type of polymer to seal the opening. Over the next few weeks we would then try thin liquids with Mason and observe how he does. If this seems to be a fix for his aspiration we would need to go back in and have a surgery to medically “fix” the gap because the polymer is a temporary fix that will eventually dissolve.  While he is in there he is also going to look at Mason’s adenoids to see if they are enlarged. He believes this could be the cause of Mason’s thick mucus. If the adenoids are enlarged the mucus would get trapped in the nasal passage instead of running freely down the throat and, as a result, gets dehydrated by breathing and therefore thicker. If he finds this to be the case he will remove them while he is in there.

Pictures of what he is going to be looking for on the laryngeal cleft in figures 15 & 16 of the link: http://cdn.intechopen.com/pdfs/24338/InTech-Endoscopy_in_the_evaluation_and_management_of_the_pediatric_airway.pdf

            Tuesday afternoon was the iPFT. We kept Mason awake all day before the test so he was good and tired. They gave him a moderate sedative and he was out. After he was nice and passed out in my arms I took him to the room with the iPFT machine. Jonathan and I were able to watch from the other room as they performed the test. He stayed asleep wonderfully although barely fitting in the “infant” size glass box. The test took about an hour and they brought him back to momma. He was passed out in my arms for another good 45min before we tried to arouse him. He was not having it, we poked and prodded him and he was out cold. Eventually we got him undressed and sat him up and he started to come to. Seeing your 1.5yr old loopy as can be is little funny! The nurse that performed the test analyzes the data then sends it to the iPFT doctor who makes some notes and then sends it on to Dr. Deterding. We should get the results either Wednesday or when we see her for the procedure Thursday.

Mason in the iPFT machine

Sleeping it off

            So far everything is going pretty well here in Denver. The hospital and multiple doctors and nurses we have met have all been amazing. Being at a hospital that has such a team approach is remarkable. As Jonathan put it today “This hospital is amazing, it’s like a one-stop-medical-shop!” We couldn’t be more pleased with our decision to come here. Wednesday is our day off so we plan to take Mason to the aquarium and hopefully the park in the afternoon. Thank you everyone for your continued thoughts and prayers this week. The anxiety and fear for Thursday is really starting to set in with me. Knowing Mason has such a support team through all of you helps calm my mind a little. Most importantly, though, is my wonderful husband. Thank goodness for his cool, calm and collected nature. I know this all weighs heavily on his heart too; but at least he can hold it together better than me!

Much love and thanks to you all!