Rolling with the Punches

Well today was a busy day.  We had two appointments at the hospital today, a swallow study and an ENT appointment.

Lil Bill has had issues with aspiration in the past.  They were first discovered during a FEES study while impatient at CHOP.  We went home from Chop with a NG tube for feeding and just like that routine tube feedings became apart of our daily lives.  Another part of our 'new normal'.  A repeat FEES study a month later showed no aspiration, so we were able to start reintroducing the bottle.  We were making progress, we made it up to an ounce by bottle for every feed and introduced baby oatmeal.

This scheduled changed two weeks ago.  Lil Bill was admitted to A.I. hospital for pneumonia and two viral infections.  They do not know what caused the pneumonia, aspiration or the viral infections, both are likely possibilities.  So we were sent home from A.I with an NJ tube on 18 hour continuous feeds.

What is a NJ tube?  Glad you asked.  An NJ tube goes through the nose and down the throat, just like a NG tube does.  But the NG tube goes into the stomach while the NJ tube goes through the stomach and into the jejunal.  They made this our new feeding plan until the swallow study and they we would come up with a new plan.  They did this because it is much less likely to re flux from the jejunal as opposed to the stomach.  And if Lil Bill is aspirating then he would aspirate on his re flux, making him sicker.  So we got this new feeding plan and went on vacation to upstate NY to see family.  What better way to get used to something then travel with it right?

Anyhow, the swallow study today was actually pretty cool to watch.  They took an XRAY video of him drinking a bottle and eating apple sauce.  To my surprise the study showed no aspiration! I was literally shocked and still kind of am because I expected the results to be different.  Way to go little man! Now the frustrating parts comes from trying to find a doctor who will manage our tube feedings.  Now since he can eat safely, its a very slow process getting to the point of no tube, we need someone to help us decide when we can pull the NJ tube and go to NG tube.  We were referred to three different doctors today to help with that.  Getting a hold of them will be my project for the rest of the week.

We then went to our ENT appointment.  We were there because of the results of the sleep study Lil Bill had.  The sleep study showed Lil Bill stops breathing for 10 seconds at a time at night, 24 times an hour.  They consider these brief moments but are concerned that he is not getting enough rest to heal and grow.  Our pulmonary doctor wanted ENT to take a look to see if it was worth taking out his tonsils to help the problem.  ENT felt that it would not be worth doing that because Lil Bill's tonsils are small.  Anther option could be to stitch open Lil Bill's vocal cord.

Lil Bill has left vocal cord paralysis from the PDA ligation surgery he got when he was 2 weeks old.  It was a risk of doing the surgery but without the surgery he probably would not of survived so the benefits definitely outweighed the risks there.  Because his vocal cord is paralyzed he has trouble swallowing, hence all the feeding tube talk.  So if ENT stitched open the other vocal cord it will most likely cause even more trouble for swallowing for Lil Bill.  The doctor, Billy, and I all agreed that we did not think it was worth it.

So they left us with one likely solution.  It hasn't been officially confirmed but Lil Bill will most likely be put on C PAP overnights while he is sleeping.  I asked the doctor if he will grow out of this.  I feel like by now I should know better then to ask those questions.  The answer is always 'I don't know, could get better, could get worse.'  Thats the most frustrating part about all this medical stuff, there are no definite answers or outcomes to offer, ever.

We also found out that Lil Bill's hearing aids have arrived, but for some reason they are not able to schedule us for a fitting for them.  We made a couple calls about this today with no results, so this too will be another project for the rest of the week.

Around 10 months ago it was suggested to me by a medical professional on my son's care team to consider making a blog.  Initially, I did not give the idea one thought.  What is the point of that? And it would be short lived because of course my son would have little to no issues in a short matter of time!  

Well months later, after telling the same stories over and over again, and after being discharged from a 5 month NICU stay for my son and him having way more issues than I had hoped, I understand why I was told I should consider starting a blog.

I truly do not know where to start.  For an 11 month old baby he has so much history.  His medical file is about 20 times bigger than me,  maybe even more.  His file continues to grow as does he (weight gain is thankfully one issue we have not had a problem with yet).  I suppose since all of his medical and developmental issues are ongoing there will be a time in the future to blog about them, for now I will focus on what is happening right now and today.

While I was making a fabulous lunch if I do say so myself (Jalapeno Popper Grilled Cheese) I received a call from AI Hospital.  I figured it was about my son's hearing aides we are waiting on (see future blog post) since I had called them earlier and left a message to see when they would be in.  I gave the phone to Billy (Big Bill not Lil Bill) so I could finishing cooking.  I was hoping that they would tell us just to stop by Wednesday since we have a swallow study scheduled for that day (see another future blog post).  Well minutes go by and I hear Billy talking to someone on the other line about Lil Bill's laryngomalacia.  I was confused as to what this had to do with the hearing aides.  I looked over at Billy and realized, we were getting the results of Lil Bill's sleep study.

Lil Bill came home from the hospital on oxygen and has been off since March.  We had our first sleep study in the beginning of July.  I was hoping that we would hear the results were great and they would finally let us get the oxygen tanks, the concentrator, the pulse ox, probes, and cannulas out of the house.  Well that is not exactly how is played out.  We were told that apparently Lil Bill stops breathing for about 10 seconds at a time, 24 times an hour.  I am slightly concerned but honestly I am not that disturbed by it.  Compared to everything else he has gone through and still goes through this seems so minuet.  Lil Bill's pulmonary doctor doesn't seem too concerned either, he gave Billy a couple different possible solutions (two including surgery).  So while we did not hear back from our audiologist about the hearing aides to get see if we could pick them up Wednesday we did get a second appointment Wednesday with ENT to help us get to one of the possible solutions.