Wednesday, August 15, 2007

Oxygen Free and Home!

We are finally home after a long four day stay at Children's Hospital. Eli is feeling much better and is overjoyed to not have his nasal cannula on anymore. He came home on Orapred, a new dose of Flovent (3 times the amount he was on previously), and a new dose of Prevacid. We have to go back for a broncoscopy, lung wash, 24 hour pH probe, and ENT consult. He also has follow-up with pulmonary next Wednesday to discuss his BPD and aspiration along with the status of his "public" tolerance. It sucks that a tiny cold and a little croupy cough can land Eli in the hospital on oxygen 2 years after his birth.

Yesterday he had two tests done to look for abnormalities in his airway structure (video airway fluoroscopy) and aspiration (video swallow study). The airway fluoro was GREAT and showed no abnormalities. This means that Eli's raspy voice and horseness is most likely not from tracheomalacia, laryngomalacia, or a stenosis. Casron has mild tracheal stenosis so we were hoping Eli didn't. Unfortunately the swallow study didn't go as well. First of all, any of you that have a two year old know that getting them to do what you want, when you want it is nearly impossible. Eli was being a typical toddler and his own stubborn onry self. We did get him to drink about 6 swallows of strawberry flavored barium out of a straw cup and 2-3 out of and open cup....the sippy cup was unsuccessful. While Eli did not show massive aspiration in any of these swallows, he did have a ton of pentatration and micro-aspiration on every one. This means that he is still aspirating at least at a micro level ALL the time, and most likely at a larger level in the evening when we witness his coughing/wheezing symptoms. We are now back to thickening on everything which is going to be so much for for Eli.

They also want Eli to have another 24 hour pH probe. pH probe you say? are thinking correctly when your mind goes straight to GERD/reflux and then to the fact that Eli had a Nissen fundoplication done in May of 2006. He isn't supposed to be refluxing and aspirating the reflux AT ALL. GGRRRRRR. They think that some of Eli's symptoms could also be the GERD coming back and him aspirating at night causing the raspy voice and further lung damage! I could just cry. We almost lost Eli after his fundo surgery last summer and I will be devastated if he is having the same problems again. So, for now we are back on a large dose of Prevacid until the pH probe is scheduled.

Eli will also be having a bronch to see how extensive his BPD damage is and how much of his damage is being caused by his aspiration. They will also do a lung wash during the bronch to look for positive signs of aspiration. The pulmo said he can clearly hear the thickening of Eli's lungs and inflammation so he wants to get in there and check it out. Flovent up to 2 puffs of 110mcg BID. Fun times. end this post, Eli is still the smiling, happy, flirting, curly-headed boy who we took to the ER on Saturday evening. He charmed the pants off the medical staff. They were amazed at his developmental progress. One doctor even asked if she had the right room when she met Eli because from the outside he looks so darn good for a 25-weeker. We were proud parents bragging about his abilities to count to 14, know all of his animal sounds, speak in sentences, etc. It was great to have them acknoledge all of our (and Eli's) hard work to get him to the place he is now. We are truly blessed to have our little man doing so well :) Check out the pictures in the next post to see his hospital stay.....


baby james said...

Glad to hear your are all home and that eli is doing better. I know how you feel. I wish you all the best with the upcoming test. We also are to be scheduled for a ph probe and edg. We are scheduled for our swollow study 8/23. And the GI just put James back on prevacid bid. Take care. Tracy

Lisa said...

Big hugs, Mama. I'm hoping for the best news possible from all this testing. I pray that his Nissen is holding steady.

Let me know if you need anything!

abby said...


Wow. I haven't checked your blog yet this week and boy was I surprised (and felt awful) about what Eli went through. The whole thing just stinks (and unfortunately I speak here from some experience). Thickening liquids stinks, and aspiration stinks, and BPD stinks, and the never ending roller coaster stinks. Hang in there and know that we are thinking of you guys and hoping that the Nissen is ok and that at some point this all just stops being an issue.

Jessica said...

Wow, you guys have been through alot recently! Hugs to you all~