Losing weight is something that many of us, probably due largely because we're Americans, can relate to. It's usually a longer process than we like. For most, ups and downs are associated with the loss. I've known very few people (none actually come to mind) who set out to lose weight and continue to lose weight week in and week out without slipping back at least a little bit here or there. You might start out with a goal to lose fifteen pounds. The first week goes by and you have lost two pounds. A good start, you think. Then, as the second and third week pass by you lose a pound, gain a pound, lose two or three only to gain them back. After a few months, you haven't quite met your goal of fifteen but you've made some great progress and have incorporated some exercise back into your life.
For Jude, this process is somewhat similar. Not that he's trying to lose weight, although we have talked about getting him to do so with how chubby his cheeks are getting :) More so for his breathing. Jude was re-admitted to the PICU (Pediatric Intensive Care Unit) on Tuesday night with respiratory distress. It all started about a week or so ago. As he has gotten older, Jude has required less and less suctioning. For those who are unaware, which is probably most reading this, I am referring to suctioning his tracheostomy tube. Here is a link for a visual image: Tracheostomy Suctioning. Basically, his tracheostomy tube, like our throats, can become clogged with excessive saliva, mucus, etc. and needs it cleared out. We do so by inserting a small tube down his tracheostomy tube which uses suctioning like a vacuum to suck it out. Think of it like a clogged sink, except instead of pouring Draino down it you are using your vacuum cleaner hose to suck out the obstruction. Anyway, we had been suctioning Jude about once or twice a day for the last month or so. This was quite a step down from his day in the NICU in which he required suctioning probably once or twice an hour if not more. About a week ago, however, we began to notice that Jude was needing more and more suctioning throughout the day and even into the night. We had our concerns, since this is typically a sign of him getting sick, but dismissed them as he was breathing just fine.
Then, a couple days ago he began getting worse. Not only were we suctioning him more but now he seemed to be fussier and was just not putting up the numbers we were used to on his monitors. Along with all of this, he had been spitting up and retching occasionally, which he is not supposed to be able to do because of his fundoplication. This was alarming not just because of that but also because vomiting could be related to a complication with his shunt. So, there were quite a few concerns out there on the table and we were going Native and joining the WaitAndSee Tribe.
This did not last long, however. I was awoken Monday night by Tracy at 3:30 in the morning saying that we needed to change Jude's trach out. This is never a good sign but nonetheless we had done a couple middle-of-the-night trach changes in the past. We do it when we feel that his trach might be clogged with gunk that's just not clearing with the suctioning machine. We also change his trach routinely once a week for maintenance purposes so, like I said the trach change itself, while not good, was not something we had never done nor was it an emergency situation. I must say though, I had a funny feeling that the trach change would not improve his current condition. I hate it when I'm right about the wrong things. I then received a text later that day while at work saying that Tracy was taking Jude to the ER per our doctors orders since he was having more difficulty than normal breathing. So I left work and met Tracy and Kay at the ER where, long story short, they ran a gambit of tests including x-rays and sonograms throughout the next four or five hours only to come up with an "I don't know answer." To be safe, they admitted him into the PICU on Tuesday night where he has been till now.
The doctors say that his chest x-ray shows that he is a bit cloudy in one of his lungs and that it looks like he has some excess mucus and other medical termed thingys in there. They have increased some of his vent settings back to what they were a month or so ago which is disheartening because, like the weight loss example, it feels like one-step forward, two-steps back for him. It feels surreal to be back at Children's Mercy again (I'm sure for Tracy this is double since she's been here with Jude the entire 32 hours or so). It's also a good reminder of how lucky we are. The room next to us has a baby in it that was a victim of a car crash and the term "doesn't look good" has been heard in the hallway. A few doors down I can see a priest an entire extended family leaving a room. It's never a good sign to see a priest leaving a room full of crying people let alone a group (since only two guests are allowed at a time unless there are extenuating circumstances, such as the need for a family to say good bye). Situations like these make me grateful that we are and have been extremely blessed with Jude's progress, however challenging it's been.
They talked about discharging him today but decided against it in order to keep him for observational purposes. So, hopefully he will be home tomorrow barring any unforeseen set backs or sicknesses. Even if he is not though, he's still happy and playful while he's here which makes the stay just a little bit easier.
