A Rough Day

My poor little man had a rough day yesterday. He did great with getting up at 4:30 and only dozed for 15 minutes on the way down to the U (I couldn’t keep him awake anymore no matter what I did) but the lung function test itself did not treat him well. To get the babies to sleep they give them chloral hydrate and they have a protocol that after “x” amount of time, if the child is not asleep they administer more. Well, after the initial dose Johnathan was very sleep but wasn’t asleep in the time required so they administered more. Apparently this was too much for Johnathan as he was in a VERY deep sleep and right away during the test required 30% oxygen thru the mask to sustain 95% sats. When they got to the point of the test where they inflated the vest with different levels of pressure to measure his lung function, he started desating and got all the way down to 84% and he didn’t come back up with more oxygen so they instantly stopped the test and tried to wake him up. As I mentioned before he was very out of it and wasn’t waking up so they put him on cannula and he did start sating better then so after a bit they tried to get the last bit of data, the after effects of the albuterol to see if it made his breathing any better but right away he destated to 84% again so the test was stopped. It took him over an hour to wake up enough to take him home and that was after numerously wiping him with a very cold washcloth. Because Mommy didn’t think about bringing an extra outfit Johnathan got to come home in 2 hospital gowns! Needless to say it was a long morning!

The good news is that clinically Johnathan is doing awesome, not sick very much and needing minimal assistance with the nebulizer and growing well. However, the results of the lung function test (which may or may not have been affected by his slight congestion) show that he is being restricted on his breaths in and constricted on his breaths out. Because of this Dr. Filbrun prescribed him with twice a day Flovent inhaler, with the albuterol as needed. The intent is to help him breathe easier if he does get sick this RSV season and to prevent any further damage to his lungs. With him continuing to grow and develop, as long as further damage isn’t done he should get a lot better and hopefully someday (usually around the age of 5 if it’s going to happen) he can be diagnosed as PAST history of Chronic Lung Disease and Bronchial Pulmonary Dysplasia. So the intent of the test was to get a baseline for how his lungs are currently performing and from this to determine how Johnathan might be respond if he were to get RSV. So the answer to that is not well, meaning that he would likely end up in the hospital and we might possibly have a bad situation on our hands. So needless to say Johnathan now qualifies for the RSV shot (synagis) and I called our insurance company and the girls will with our pediatrician's authorization too! This is a big relief to me! As a result of all of this we will be hermits again this fall/winter/spring, hopefully this will be the last RSV season we will need to be. Obviously we are quite concerned from all of this and are just praying to get thru another season healthy so if you can all pray for that too it would be appreciated!

Now I get to tell you of the fun things the babies have been doing lately. So for as much as Johnathan was SO out of it in the morning, he was completely back to himself by yesterday afternoon (supposively the meds would only be half-way worn off by 8:00 last night). He has decided that he’s going to sit up on his own so he successfully prop-sits, then lifts up his hands and sits for a few seconds but then tumbles over, usually on his back. He tries to catch himself but doesn’t do that great. Needless to say he’s kept us busy making sure he’s a) not on the hardwood and b) not too close to the girls so he doesn’t bang them. He’s back at it again today, over and over so I think he’ll master it soon! He’s also been crawling more and him and Mady can get themselves out in to the foyer or kitchen in no time! Last night my Mom was holding Annabel and Mady was across the room so Mom told her to come to her and she’d hold her too. Right away she crawled right over to my Mom, it was SO cute!! Annabel has been spending more and more time on her tummy (slept on it all last night again) and playing with the dogs and her siblings, overall just being much more interactive than before and tolerating a lot more too! The girls are eating more and more true table foods and Mady is starting to feed herself more. It is definitely a busy but fun time in our house! We’re definitely going to become a gated house soon!!

The next thing I’m excited about and going to look in to for Annabel is called the Treadmill Study thru the U. It has been successful for infants with downs syndrome to help them walk sooner (upwards of 6 months, so at 18 months instead of the usual 24 months) so they are now trying it on children with mild CP as well, which makes sense because in both cases you have issues with your muscle tone. So we’ll see where that leads us.