Saturday, May 16, 2009

Hungry for Daddy's nose

Ava has continued to shed some of the vestiges of her injury this week. Two major medical support devices remained. She has continued to wear a cervical spine collar, which given its small size looked downright adorable, but those of you who know Ava also know that Traci could dress her up in a potato sack, and she would still look adorable. The cervical collar was also pathetic, in that it reminds us of the tragedy that occurred on the evening of the 23rd of April, 2009, that should never have occurred. The cervical collar was placed two weeks ago to provide extra support to Ava’s neck due to a concern on the MRI that some of her neck ligaments were injured. She had further imaging studies done this week that allowed the doctors to feel comfortable in removing the C-collar.

A secondary benefit that the C-collar provided was supporting Ava’s head. (“Psst… Fred… I think that you just said that this is why she was wearing it in the first place.”) Let me explain… If you were in a car wreck, then you may have to wear a C-collar to prevent you from moving your head/neck in a way that could result in your paralysis; however, the muscles that control your head/neck still work fine. In Ava’s case she needed the C-collar to prevent injury to her spine; however, her neck muscles are not working so well and her head is floppy… like a newborn. The C-collar has provided support to her head, keeping it from being floppy when she is held. Not having this support may actually help with her rehabilitation some, given that she will now have to start using those muscles more.

The last major support medical device that she has is the nasogastric tube. The tube is about the diameter of the charging cord for your i-pod. Come-on. I know that you all have one and that it is probably right in front of you. It is even more similar to your charging cord given that it is almost a milky color, actually tan, given the tube feeds that are in it. The tube enters her right nostril and courses down into her stomach. The remainder of the tube is taped closely to her right cheek with a piece of very thin, clear tape. The tape is so thin that you cannot even tell that it is there unless you look very closely. It makes it appear as if the tubing is just stuck to the side of her face. The remainder of the tubing is often draped over her right ear and pillow and is connected to a bag hanging from an IV pole to the right of Ava’s bed. The bag is clear and contains a liquid that looks like a cappuccino.

When I was visiting with Ava yesterday, she would reach around the right side of her face with her right arm and catch the tubing, pulling it forward. Speaking from experience, it can be quite annoying having such a thing sticking out of your face and down your throat. Have you ever had a scratch in your throat? It is always there, irritating you, but you can do nothing about it. You swallow, hoping that it will rinse away, but it doesn’t. The swallow does nothing but make it ache more. Ugh!! The futility.

This device remains in order to feed Ava and keep her nourished. It will come out once she regains enough control of her pharynx (that area of your throat that is behind the uvula – the dangly thing in the back of your mouth). The pharynx is very important. Without ever having to think about it your pharynx/epiglottis is a very important sorting mechanism. It separates solids/liquids (sending them down the esophagus) from air. Sometimes people lose control of this function and their body doesn’t know when to close the airway and shunt solids/liquids down the esophagus. As you can imagine, this could be a very bad situation if your body is diverting food into your lungs, even just a little bit. Earlier this week Ava underwent a swallowing study to see how well her swallowing mechanism was working.

The swallowing study involves taking her to Radiology where a fluoroscopy study is done. This is a real-time x-ray where the doctors/speech pathologist will have her swallow liquids, crackers, etc that are coated with barium to see if they are going down the right way. They watch it real-time on a television screen right next to her. Ava did very well during the study, with everything going the right way, but at the end of the study a small amount went into her trachea and she didn’t cough. The fact that she didn’t cough is slightly problematic because if the feeding tube were discontinued and she aspirated her feeds, then possibly they wouldn’t know, because… she didn’t cough. They keep feeding, she keeps aspirating, no one knows… problem. As a result the feeding tube remained in place. Overall, the study was reassuring and will likely be repeated later this coming week. Given the strides that she is making, I hope and expect that the next time will be “normal” and the nasogastric tube will be out.

This is a necessary thing to get the feeding tube out for a variety of reasons, but also means that a new task will result… feeding. This task I am sure that Manny and Traci will be thankful to have, because it will be one more indicator of recovery. I also know that they have no shortage of people that would just love to sit with Ava and feed her. I am not quite so sure why mothers seem to love this task so much, but they do. I think that feeding is a continuation of nurturing/nourishing that is so endearing to mothers. Maybe the solitude and comfort of being with your child when they are so focused on you as their provider.

This reminds me... A few days ago Ava gave everyone a very good indicator of how ready she is to get rid of the nasogastric tube and have a Happy Meal. When I went to see the Lopez’s at the hospital yesterday, I noticed that Manny had a tiny red dot at the tip of his nose that looked very much like a pimple. As it turns out, he was holding Ava on Wednesday and was gently rubbing his cheek against hers, touching nose to nose, feeling the softness of her skin and lips with the tip of his nose… then CHOMP!!! Ava clamped down on the tip of his nose. The first solid food that she had had in weeks! While she may temporarily have many features similar to a newborn, she still has the teeth of an 18 month-old. One more indicator of recovery, and something that Manny is not soon to forget.

Ava has continued to make small gains everyday that are almost imperceptible to those that are closest to her, but are so very prominent to those who only see her occasionally. In our last entry regarding Ava’s recovery, we had discussed that she was kicking her legs, but was not very active with her arms. This has changed a lot during the past few days, now with seemingly purposeful movements. While she is not doing fine motor movements with her hands, such as picking up an object, she is using her arm to brush things away from her face and even used the back of her right hand to push her pacifier back into her mouth last night. These achievements may seem little but are very significant. It is like your newborn child making small coordinated movements. Each few days or so they are able to do some small task that they weren’t able to do before. This is thrilling as a parent for an otherwise healthy child that is expected to meet these milestones anyway. The “thrill” that the Lopez’s must feel with each fragment of a task that Ava re-accomplishes must be 10-fold greater… as it should be. These skills were taken from her… from them. Each one regained is a victory.

Fortunately for the Lopez’s, Ava’s recovery has been meteoric up to this point, but now we are in a rehabilitation phase. No one knows exactly what to expect, including the providers that are caring for Ava. There is no time frame for expectation of meeting certain milestones. This is indeed frustrating for everyone involved. It reminds me of being a child and the agonizing wait for those things that you so very much desired… Christmas, spring break, summer vacation, a party, etc. They seemed so far away. I knew exactly what they were like and couldn’t wait for them to come. I could picture the joy that I would feel when they finally arrived. But no amount of “wanting” would make it happen any sooner. This is how it is with Ava’s recovery, with one very unfortunate twist… no one knows the date that she will be considered “fully recovered.” The waiting would be so much more tolerable if we at least knew how long we had to wait. But not to worry, it will happen… and we will still be here. Ava… the party waits for you.


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