March 27… Progress and Lingering Uncertainties

I realize that this post might be a bit of a downer, so I wanted to share this video, which hopefully illustrates why I am so encouraged, despite all of the scary bits mentioned here. As you can see, Jack is making a lot of progress. Unfortunately, we still have some lingering problems that are muddying the waters of Jack’s recovery.

First, there are the fevers. Jack is continually spiking fevers that seem to have no known cause. All of the cultures of trachea, g-tube, and central line have come back negative for any obvious infection, urine and nasal swabs likewise for any viruses. Doctors just can’t figure it out. Dr. Piatt doesn’t think that it is likely to be neurological, and he isn’t too worried about the shunt, thank goodness. Most of the time, Jack is not feverish, and when he’s not feverish he is happy and very content, and has been making great strides in therapy. The procedure to have the central line removed has continually been pushed back in case we need to give Jack antibiotics through that line. The most current plan is to take the line out tomorrow, but I’m not so sure that will happen.

Another tick on the “not-so-great” column is that Jack has started tolerating his feeds poorly. We’ve had a number of vomiting episodes over the last few days which seemed to have come out of nowhere. This wouldn’t be so bad in and of itself– more of a question of getting the right timing and volume of his feedings down– but we had a complication today. The pulmonology team, encouraged by the status of Jack’s vocal cords, had opted to uncuff Jack’s trach. The cuff is a small balloon that is used to block secretions from entering the airway above the trach. For Jack to use the Passey-Muir valve in order to speak, he will have to be able to use an uncuffed trach, so the pulm team decided to see what would happen if they uncuffed it. An uncuffed trach means a poorly-protected airway.

This morning, Jack had a more extensive vomitting episode, and I found myself frantically suctioning formula out of the trach. What this means is that food was about to get into his airway on a path to his lungs. This is the scenario that we dread, the whole reason that Jack was trached in the first place… the threat of aspiration. Let me tell you, I was panicking. Doctors cannot assure me that no food matter soiled Jack’s lungs after this episode, but they did listen to his lungs several times today and I understand that they sounded clear and healthy. I was glad that I had my hand on the call button like a miffed Jeopardy contestant at the first sign of trouble and that a nurse was with me when it happened. I think we will all be edgy and worried that a bad infection could start, now that we know this has taken place at least once.

Thankfully, the trach has been re-cuffed until this feeding situation gets sorted out.

On the positive side, Jack has rediscovered his feet! He is kicking more, lifting his knees up off of the bed, and generally regaining function. You can see a little of that in the video. He’s also started to turn his head just a little bit, which is major. His hands have grown much more coordinated, his eyes can focus and track better and for longer periods each day. He’s really doing great things in therapy– and also in his unofficial “Mom-therapy” time. Today, for example, while I was giving him a bath, I lifted up one of his legs to wash him. He saw his foot in the air and reached both hands out. When I helped him by moving his leg towards his hands, he grabbed his foot with both hands and opened his eyes wide and grinned. I bet he will be putting both big toes in his mouth again in another few months!

He’s also been taken off of isolation, meaning that I can (theoretically) take him out of his room. Unfortunately, that would take about six people and an ungodly amount of equipment, so I haven’t tried it yet. We’ll save that task for later. I have also changed my first trach, which was very scary, but I think Jack and I both handled it like a really good team.

John is taking up the night watch at the hospital tonight, so I’m going to get some good rest in my own bed at last! My next update will likely be on Monday. Thanks for continued hope, love and prayers, all!

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6 thoughts on “March 27… Progress and Lingering Uncertainties

  1. Beth Simpson

    Thanks so much for posting the videos and all the links to various websites to help us understand the medical jargon and what is happening to Jack. I felt so relieved to watch the three families who have children of various ages that have trach’s – I never had any idea. It is awe inspiring to see the tenacity of the human spirit and body to overcome such obstacles and live a joyous life.

    I love your writing, Meg. I have been sharing it with my literature class because, in addition to the class praying for Jack, as proof that we use our writing skills our whole life. Your descriptive writing just makes us feel like we are right there with you in the hospital, which helps us know how to hope and pray and makes us feel connected.

    Hope you get some much needed rest this weekend, and we still have your back when it comes to thoughts and prayers!

  2. Carol B

    I admire the strength of you both!! Reading your entries can only vaguely suggest all the emotions and trial you and John are going through. Jack is a lucky boy to have such great parents and family.
    You too, Ruth! Keep bouncing Jack!

  3. Jill Gaffey

    Dear Meg, I’m sorry things did not go well uncuffing the trach this time but don’t despair. Maybe there are just too many other issues going on right now and once they are resolved, which I’m sure they will be, he will have more success. All of his physical strides are so encouraging and it was so great to see him demonstrate this in the video! Sending our love and continuing prayers, Aunt Jill

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