Post Surgery Update

A lot has happened since my last post. Some good, and some not so good. Judi's lungs are totally clear and there are no signs of infection anywhere (blood, urine or lungs). She is still on the ventilator and is very weak. We also identified that she has a blood clot in her right arm. The terminology is "deep vein thrombosis," or DVT for short when it is in one of the veins deep in the extremity. It is only a partial blockage and the primary concern is that it could break free and get lodged in a lung (that would be very bad). They started her on a blood thinner to prevent any other clots and just let this one be absorbed by the body over time since there is no full blockage (messing with them increases the risk of breaking free). I always get worried about blood thinners when we are dealing with an unknown head issue and doubly cautious when surgery is in the picture.

Judi lost the ability to move her right arm/leg late Tuesday/early Wednesday. As you can imagine, I am worried sick about that. The belief is that this is a result of the skin flap pulling in against her brain due to the combined effects of "sinking flap syndrome" and the fact her shunt is passing too much fluid from her brain. This resulted in significant pressure on her brain and actually forced part of it into a place it shouldn't go. Recall that this was the issue that was originally driving us to get her into surgery to correct.

She is also continuing to have periodic episodes that the only description that comes to mind is a severe panic attack. Sometimes they come out of no where and others are due to some simple stimulus (touch her, roll to a new position, etc.). She starts breathing hard on the ventilator tube in her mouth and I believe starts to feel she can't get enough air (try breathing through a large straw). Once you start to panic, you breath faster and shallower and the whole thing intensifies. Her blood pressure and heart rate start climbing and her temperature takes off as well (working muscles hard). The only way to break the cycle once it gets going is to give her a sedative/pain medication to relax her. We can't let it go for long because the oxygen levels in her blood will get to dangerously low levels. I suspect she had a mild one of these that caused us to bring her to the hospital (she didn't have a ventilator tube then, she was breathing through her nose and collapsing her nostrils). This is definitely what happened when she had the issue that ultimately led to putting her on the ventilator. The only airway we could get her initially was a "trumpet" that goes in a nostril and holds it open (another straw).

With all of the issues piling up, we made the decision that the best thing for Judi's health was to replace the shunt valve in Judi's head with a variable valve. This would allow us to control the pressure in her head by controlling the about of fluid being drained off. Judi had that surgery last night and the valve was replaced successfully and the shunt is working correctly. There was an issue during the surgery that has us concerned. When the old valve was removed, there was a large pressure shift in Judi's brain resulting in some significant movement of her brain. There is the possibility that she suffered some brain damage as a result of this. The fact that the pressure was so negative just validated that we needed to do this surgery. Her neuro checks (pupil dialation, response to external stimulus, etc.) after surgery were not good, but improved significantly over night. Her head also filled significantly over night and we had to slow it down some this morning to make sure we didn't go too fast. It is a good sign that her condition improved over night as her brain was allowed to return to its normal position. I can say that last night was one of the longest nights of my life. I talked with her, prayed with her and dealt with some watery eyes (must be the air in this room) from the minute I talked with the surgeon until I could see she was heading in the right direction.

So what's the plan? The plan is a little squishy right now (those of you that know me also know how much I hate that), but lots of things are still changing. If Judi recovers to a point close to her baseline before all of his started and we can get her off the ventilator, we'll take her home and let her get strong and do the rib graft at a later date. If she doesn't recover, we will put a trach in (minimize chance of damaging her vocal chords, throat, etc. with tubes going through them) and move forward with the graft. There is a real risk that there is an infection laying out there to create a problem doing it this soon. In this case, the benefits out weigh the risk. If this doesn't work, we'll have to determine the next step.

At this time, I am going to remain confident that one of these strategies will be successful (THEY HAVE TO BE!!) I have received numerous well wishes, kind words/acts and prayers over the last several days. I can't thank you enough. Most have asked if there is anything they can do to help us through this difficult time. In addition to the prayers, I would ask all of you that knew Judi not to forget her. It has been such a long journey, I know that you have moved on with your lives and that is as it should be. Take a few minutes and remember that ball of fire named "Judi with an i." I saw that fire in her eyes last night as I begged her not to give up. I refuse to give up on Judi and I am convinced that if we keep lifting her up (physically, mentally, emotionally and spiritually) she will find a way back to us. I just know it in my heart.

Steve