Up and Down Week

Up and Down Week

Its been a long and busy week, thus the lack of posts. This will likely be a long post so if you’re looking for the quick status: Madeleine is currently on a ventilator and is stable. Read on for the details and the plan moving forward.

My last post indicated that Madeleine was intubated and was stable. The following day, Madeleine continued her slow wean from the ventilator and the plan was to extubate Madeleine by the end of the week. Of course, Madeleine—true to form—decided to shake up the plans on Tuesday night when she extubated herself by pulling out her breathing tube. The nurse was shocked that Madeleine was able to do it as the tube was connected very well and Madeleine was sleeping. The nurse stepped out for a moment and when she came back in Madeleine was still sleeping but the ventilator was making noise. The nurse went to turn off the buzzer on the ventilator and then realized that Madeleine had pulled her tube out. Kirsten and I have seen babies in the NICU extubate themselves and it is usually very scary as the baby can struggle due to the traumatic nature of such a drastic change. Not my daughter... Luckily for Madeleine, she was fine and didn’t even need to be re-intubated. Yes—we’ve just added this event to the ever growing pile of crazy events that Madeleine has encountered.

Unfortunately, after a few good days off the ventilator, Madeleine’s lung performance went down hill on Friday and she was re-intubated on Friday afternoon. Right now, Madeleine is doing well on the ventilator and we’re faced with some difficult decisions. The doctors are concerned that Madeleine needs long-term (likely months) ventilator support until she will be able to breathe effectively. They believe that the repeated bouts with pneumonia, her prematurity, her pulmonary hypertension, and her inability to grow have caused her lungs to be underdeveloped and unable to breathe without the support of a ventilator. Furthermore, they believe that while she can do well for a few days off the ventilator, her repeated steps back makes it difficult for her to gain weight and develop. Recognizing that Madeleine can’t continue to wean off the ventilator only to be re-intubated a week later, they are recommending that Madeleine receive a tracheostomy—a surgically placed ventilator tube. Their reasoning is as follows:

- A tracheostomy (trach) is recommended whenever someone will knowingly be on a ventilator longer than a few weeks.
- The trach is better for someone with Madeleine's medical picture as it is easier for the nurses to suction and clear out the gunk (that's a technical term) in her lungs.
- The trach is less intrusive than a normal ventilator tube as it doesn't impact her sinuses and some of her throat/airway. Repeated on/off intubation can cause scarring and other problems.

As with any medical procedure/treatment, there are some negatives as well. While there is some medical risk with the trach, the negatives are more lifestyle issues as there will be additional burden on maintaining and monitoring Madeleine with a trach. I'll go into detail on these issues in a future posting and while they could be significant, they're somewhat inconsequential as we agree with the doctors that from a medical standpoint, Madeleine needs to have a trach. We're obviously disappointed that we have to take this step and admit that Madeleine needs to have medical support for an extended period of time. At the same time, we're comfortable with the fact that this step should be the one that helps get us over the hump and will allow Madeleine to grow and develop. That's essentially the most important thing for Madeleine right now. As she grows and develops, the doctors expect her lung functioning to improve and they expect her hypertension to improve/decrease. Eventually, they will be able to re-attach Madeleine's intestines, thereby eliminating the colostomy bag and she'll also develop to the point where we can begin feeding her without a feeding tube. These goals are all a bit down the line and we can't even begin to put a time frame around them. However, I've listed them to reiterate that the goal of the trach for Madeleine is to allow her to develop so that all of her other issues can be addressed. Furthermore, the trach itself is a temporary step as it will be removed when the doctors determine that she's able to breather on her own. In short: its a step we would prefer to avoid but recognizing the necessity, we're moving forward and expect this to be the step that allows Madeleine to recover and move forward effectively.

I'm sure you may have questions about a trach as it is a fairly uncommon procedure. I'll do my best to post information about how they do the procedure, what it entails, and how long we'll have it as we learn more about it. If you have questions, feel free to research online and/or give us a call. Thanks again for your support. I'm headed to the hospital and I plan on posting additional information later tonight.

Brent