I’m blogging from my phone in the hospital, so hopefully this works !
First of all, thank you so much for all the love and prayers on my last post - I’m so glad to have long time faithful readers still here supporting us. You all are the best !
Tuesday morning we came up to Doernbecher Children’s Hospital to see the pediatric pulmonologist .. the first thing he said when he walked in the room was that neither he nor the radiologist felt the mass on Madison’s CT scan was anything other than very swollen lymph nodes due to her ongoing pneumonia episodes over the last four months. I can’t even describe the relief we felt with those words. He went on to say that he believes this is a result of chronic aspiration - even though we were thickening all of Madison’s liquids, everything he saw indicated that she has still been aspirating. He immediately called the pediatric department at the hospital to see if they could get us admitted, but there were not beds available. We went back home (2 hours away) to get things situated with our kids and Wednesday afternoon the hospital called to say they were ready for us. We checked in last night and Madison had an IV put in for antibiotics, and this morning she had a swallow study done.
If you’re not familiar with a swallow study, it’s pretty simple - a speech pathologist and X-ray tech work together to take live images of Madison swallowing different consistencies of food and liquids. What was discovered was that Madison is continually aspirating on all liquids, even thickened ones . This is a different result than what was show last August, and obviously is the reason she has had six bouts of pneumonia since December. She showed absolutely no signs of aspiration while she was swallowing- she looked as comfortable as could be - which is called silent aspiration and which is why we have had no idea that all her liquids are going directly into her lung.
Right now we are waiting to see if the ENT, pulmonologist and anesthesiologist can coordinate their schedules tomorrow to do a bronchoscopy and endoscopy on Madison ... it may be that she has a cleft in her esophagus that is causing this aspiration (we are actually hoping that is the case because it’s taxable !). If she does have this cleft, they will repair it while they are doing the procedure. If she does not, then she will go home on a feeding tube and we will be working with a speech pathologist on helping her to learn how to swallow better - and it could also be that she just needs time to develop this skill .
So for a few hours we wait to see what the plan is, but right now she is sleeping comfortably now on daddy’s tummy .. I am feeling sooo relieved that we have answers !!!
I’ll blog again more when we know what is happening, but thank you against for your love and comments and prayers - we appreciate it all so much .