Mason's Journey: Infant Pulmonary Function Test

Mason's Infant PFT (pulmonary Function Test) was today. We woke him up at 4am to make sure we could get some food in him before the 5am cut off. Derek got up with him at that time and was able to get some in but not much...but who wants to wake up to eat that early anyway?! So, I took over at 7am while Derek got a little shut eye. All Mason could have from 5am to 9am was clear liquids, after that it was nothing. Today was a day I was thankful for the nuk to help pacify his hunger.

Mia was not excited that Mason was up so early to terrorize her.

Soooo sleepy at 8:30am. He crawled into his chair with his blanket and my scarf (he likes to carry around my scarfs lately) and watched Mickey Mouse Clubhouse. Normally we only watch that show during treatment time, but today he got extra attention.

The car ride, which I thought was going to be tough to keep him awake, went great. Only a few times we started to close those eyes, but I jumped into action to not let him drift into dreamland (although all 3 of us wanted to go there).

When we arrived to Children's we headed right to Radiology for another Chest X-ray. The last one we had was the day he was admitted to the hospital in July, so we wanted to see what his new "baseline" was. We knew right where to head (kinda hate that I have learned the layout of Children's so well) and had to wait. I knew I should have called the day before because they had to call to the clinic due to the order not being in the system. We had timed our arrival just so that Mason was not sitting to long because we knew he was not going to be a happy camper. Within a few min we were back in the room.

"welcome to the gun show ladies."

no?, that joke doesn't work here?..too bad we have to have some fun!

We got the Pulmonary Lab/ CF clinic at 11am and got checked in.Happy to report that Mason is weighing in at a whopping 24 pounds, 6 ounces. That is more than a pound increase in a month! AWESOME JOB buddy! He is 31 1/2 inches tall. These stats put him very close to the 50% in all three categories! LOVE IT!!!!!

"I want to go to S.L.E.E.P people!!!!"

The had warned us that the tough part was getting the Chloral Hydrate into him. It is the medicine to help him go into a deep sleep for the test. It reportedly tastes very bitter. He only gagged once and took the rest of the 3 syringes like a champ! The nurse was impressed but we knew he would rock! It took him about 30 min to finally get into a deep enough sleep that they could take him into the room.

All tuckered out, hooked up to a monitor, and ready to rock!

Now, just to warn you, the next set of pictures look worse than it really is. He got "hooked up" to all the machine at about noon. They placed "silly putty" around his mouth to help keep a good seal on the breathing mask. He was breathing in room air the whole time, but oxygen was available if needed (which he did not). They placed a cloth wrap around his chest on top of a plastic bladder that would fill with air. They monitored his heart rate, respiration's, O2 levels the whole time. A blood pressure check was done every 5 min. The test took about 1.5 hours.

All hooked up in the "box." They only close the box twice during the test and it is only closed for about 5 min. They seal it to get indications on how much his lungs can hold.

Sorry it is a little dark. The door was closed for this part. This was the only video we could do before we were told we couldn't video according to hospital policy. Feel free to watch the video on the previous post to get a better idea.

The room isn't very big so they set up chairs for the parent's to sit and watch if we wanted. I stood in the room for the majority.

There are always two people present during this test: the nurse to monitor vitals and is there in case needed and the respiratory therapist who is performing the test.

The wrap he has on would quickly inflate and basically push all the air out of his lungs. It simulates what we do when we blow out. They also force air into the lungs for this test...so we warned he could be a little gassy for 24 hours...as yes he is. Actually, during one of the inflation's he let out a very large and long fart.

His electrodes to monitor before, during, and after the test. He was loopy after the test and provided us with some laughs. We were told to watch him and not allow him to walk alone once home for a few hours because he would be walking like he was drunk..and that he did!

Results: Overall great! The preliminary results for the PFT ranged from 100%-128% FEV.5. Now I am not entirely sure what this means but I was told this is very good. We wanted over 100%. Dr. Q was to review the results and give me a call tomorrow or the next day.

Also, while Mason was having the testing done, Dr. Q brought Derek and I into an exam room to review his Chest x-ray. We looked at all 4 that he has had this year. She stated that the lungs "look better" since his hospitalization, but did notice some CF related changes. Of course that's where the tears come in. I hate to hear there are "changes" meaning mucus build up, inflammation, and air trapping in his 16 month old lungs, but this is our reality.

For the most part we try not to think real hard about what his lungs will look like down the road, but every time we head into the clinic you can't escape it. It's hard to swallow the fact that his lungs will continue to detirerate over time and there is nothing we can do to stop it...slow it down yes, but stop it no. Parent's are suppose to protect their children and this is something we can't protect him against and are reminded daily of that struggle. But he is so darn cute we decided to keep him ten times over. :)

For now we do what we can. Hypertonic Saline, Pulmozyme, and the Vest are three big guns we are fighting back with. Exercise will be the forth. Look out world because Mason is going to be the star athlete in every sport! Dr. Q was happy to hear we got Mason a bounce house for Christmas...it will be great for his lungs!

Headed home! Dr. Quintero gave Mason a bear to head home with. Not sure if it was because he was such a trooper, because she felt bad that I cried again while discussing Mason's lung status, or because it is Christmas and the CF clinic rocks. I think it might be all three.