Baby Owen started Occupational & Physical Therapy through Early Intervention 3 weeks ago. Initially, we had some kinks to work out -- clenching of his fists and favoring his right side -- but they have since resolved for the most part! He is just doing SO great developmentally, we couldn't be prouder! He is already bearing weight for long periods of time on his legs and is now reaching and grabbing toys with BOTH hands! Also this week -- he discovered how to giggle! We just love our little playful smiley boy!
We had a 23-hour EEG test at Children's on February 17th to try and see what was happening during his episodes. He did end up taking some during the evaluation, which we were pleased with because we needed the Doctors to see them in order to try and understand them. We have since received mixed results on the testing, and will have to wait until next friday's Neurology appointment to discuss it further.
Little Owen also had a Barium Swallow Study 2 weeks ago to determine if it was safe for him to continue to consume regular liquids because of the constant struggling, gagging, choking and noises he was making during the majority of his feedings. Basically, they mix formula with Barium to make it show up as they conduct a moving x-ray picture as he swallows. It is videotaped so that the results can be reviewed and analyzed in slow-motion.
The result of the study was that he was silently aspirating, which means the liquids were escaping into his airways but that he was showing no outward signs of distress or choking. When food or liquid enters the airway, a protective reflex triggers you to cough to propel the food/liquid upward and prevent it from entering the lungs. Baby Owen does not have this reflex/sensation.
As you may know, aspirating liquids in to the lungs can lead to respiratory problems, such as pneumonia, which is definitely something we don't want anywhere NEAR Baby Owen (or anyone, for that matter!) He will not be allowed to consume any kind of regular, non-thickened liquids until we have a follow up swallow study in 4-6 months to see if he is still doing this. Yes, it's a little disheartening to encounter yet another issue, but it's just another branch on the tree that is Baby Owen -- there are ways to deal with it if he is still silently aspirating at that point, such as commercial thickeners for water, milk and juice.
He now has to have his formula extremely thickened with rice cereal -- 1 tablespoon per ounce! Over the days following the swallow study, he seemed to have taken to the new consistency. Although he was eating a little less, (he went from around 24oz a day to around 20oz a day) the new way seemed to work for him up until a few days after that, when his feeding problems returned. He once again starting pushing the bottle away, making odd noises and just being plain irritated during feedings.
Fortunately, we were able to get in the following week with a feeding team for the second time at Children's. They witnessed his feed and the result was that we were not thickening based on how much the formula expands when you mix it with water. So we were sent on our way with the new information, in hopes of fixing the problem permanently this time.
That same week, we had an appointment with the Ear, Nose & Throat team at Children's -- the swallowing team had referred us to them so we could get a "scope" of his airways to try and get to the root of the problem, if there even was one. The team put a scope up his nose and down into his throat (yes, he hated it!) and fed him regular formula and also his thickened formula. We were able to see exactly what was happening - the regular formula was escaping into his airways and the thickened formula was doing it's job and going to the right place.
On the scope, they confirmed that Baby Owen was silently aspirating -- whether this is linked to his traumatic brain injury or not, we don't know for sure just yet but, he definitely is missing the sensation of liquids escaping down the wrong pipe.
They saw two other things we were unaware of: that he has a Laryngeal Cleft Stage 1, which they were not going to immediately do anything about, in hopes he would grow out of it in a few months or so.(http://www.childrenshospital.org/health-topics/conditions/laryngeal-cleft) He also showed the typical signs of having a "floppy airway" or "laryngomalacia" - which may have been responsible for his labored breathing and overall squeakiness. (http://www.chop.edu/service/airway-disorders/conditions-we-treat/laryngomalacia.html)
So, the plan was to stick to the thickened formula. The Dr's opinion was that hopefully he would grow out of this in the coming months and have a follow up appointment in 3 months.
Unfortunately, O3 had begun taking choking spells when just simply lying on his back over the last few weeks. Some big, some little. Last thursday, he took one around 4am that flung us out of bed to get to him so that we could help him catch his breath (thank you, bed side crib!) The doctors just assumed it was an acid reflux issue. While the episodes did scare us half to death, he seemed to recover fine each time. Until now.
Tuesday night around 10PM, we put Baby O down in his crib thinking he was out for the night. Owen and I stayed up to watch a little TV before going to sleep. About an hour later, we heard the baby making a weird sound. I came over to his crib only to see my worst nightmare - Sweet Baby O was choking hard. Extremely red, foaming at the mouth, completely stiff and not breathing. I grabbed him out of the crib and made an attempt to get him to breathe but I couldn't, so I handed him over to Owen. As he was trying different methods to help Baby Owen catch his breath, I rushed to call our home nurse to walk us through other things we could do to help him. He told us that after he caught his breath, to roll him on his right side until it seemed like he was calming down, in hopes of helping the fluids he was choking on migrate. He also said that from the sounds of it, Baby Owen was choking on his own secretions and to go immediately to the Children's ER.
We hurried up and wrapped him in a blanket and rushed the 2 blocks up the hill to the hospital. Once there, we ran through to Emergency, explained he had been choking, was prone to seizures and silently aspirating, and we were immediately taken back and seen. They did a chest X-ray soon after, to determine if he had aspirated any fluids during the event. The results showed that his lungs looked "okay" for now. They explained that we would have to be admitted given his history, to see what was causing these horrific choking episodes.
Baby Owen was observed overnight Tuesday and seen by a few different teams Wednesday morning. Initially, the plan was going to be to adjust his acid reflux medication to a different brand and go from there. However, while the doctor was explaining this suggestion, Baby Owen once again took two more harsh choking spells and the doctor instantly changed his mind. His new opinion was that we should get on the "add on list" for surgery the next day (Friday) -- a procedure to fill his laryngeal cleft and a procedure to "snip" open his floppy airways. They are hoping that by doing these two things, some of these breathing and feeding issues can possibly be alleviated. They cannot, however, guarantee that this surgery will do anything to fix the problem of him aspirating on his own saliva. There is only a chance this could resolve the issue. If not, this is something that will hopefully work itself out in time.
Since we are on the "add on" list for today, we are just hanging out with out sweet baby boy and waiting for them to have an opening to take him in. We are quite nervous for him to be put "under" because of his brain injury, but we know our boy and he's strong enough to handle coming off of the anesthesia! He has been having choking episodes left and right since we've been admitted and although it breaks our hearts to watch him struggle, we are certainly confident that the staff at Children's will not let anything happen to him.
It seems so crazy that just Tuesday he really giggled (like a maniac!) for the first time and that night we ended up in the ER, but such is life. He will continue to giggle through all of his trails and tribulations, and will always be the little warrior in our lives! <3
As always, the three of us are SO thankful for the love, support and prayers our way.
The three of you are simply amazing! You have continuously inspired me since this journey began and you will forever be in my thoughts, my heart and my prayers. I love you all!!! xoxo
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