WIERSMA FAMILY BLOG A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early. Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....
Saturday, July 4, 2009
This is Mark again. I have been encouraging Kate to get involved with the "blogging" a little more because I think she has a different perspective than I do on some things. Anyway, it has been a challenging couple of days since our last post. Everything had been moving along hunky dory until Thursday. The NICU has decided to put all of the babies with Serratia into the same nursery, or actually the same two nurseries. So the boys were moved from their corner of the world in nursery 3 to nursery 2. We are actually still sharing the same wall...but it is different. The moved happened on in the afternoon and Kate was there. As soon as they got everything switched around, Kate started holding Maxwell. He was a little fidgety and his oxygen saturation dropped and was not recovering as quickly as it usually does. 9 times out of 10 this indicates that he has a goober in his ET (breathing) tube that needs to be suctioned out. This is done by threading a smaller tube down his ET tube to a specified length (usually just past the end of the tube in his lungs), and then suction is applied and the smaller tube is pulled back up. The suction tube is then flushed with saline to get all the gunk out and all of the "stuff" collects in a little bucket near their incubators. Apparently during the move, the suction hoses were never checked, turned on, etc., so when the nurse went to suction Max, she pushed the tube down, pulled the tube back up, flushed with saline, but nothing came out. So she did it again. Then Max had what they call a bradycardia or "brady" for short. This is when their heart rate falls below 80 beats per minute (bpm - typically Max is around 140-160 bpm depending on how awake he is). It is not a rarity in the NICU for kids to have bradys, but Max was not recovering. The nurse called respiratory and had to "bag" Max for a couple of minutes (using an apparatus to give Max "manual" breaths...we have all seen these on the 14,000 ER and other medical dramas on the major network channels these days...this one is just really small). He did eventually recover, but it took a while to figure out that the suction had never been turned on. With out the suctioning force, the saline the nurse used to flush the tube out all ended up in Max's lungs. Keep in mind that all of this drama happened while Kate was holding Max, so she was very shaken up. And needless to say, he has not been a very happy camper since then. His gasses on Thursday and Friday morning were garbage. His vent pressures increased from 27 to 30 over about a 12-hour period following the "incident", and only as of this morning were they able to make a change in the right direction to a pressure of 29.
We received a phone call from Dr. Dr. on Tuesday and he wanted to discuss the possibility of Maxwell needing a tracheostomy. This would be a surgical procedure where they would install a device to near the base of the neck to allow access to the lungs without having to use the mouth or nose and have a tube down the throat. The most common need for a trachesotomy (I will be calling it a "trake" going forward) is that the lungs are strong but the airway is restricted. Thetrake bypasses the airway allowing for ventilation, CPAP, oxygen, etc. to still be used without having to intubate a child and possibly further damage the airway and vocal chords. Max's case is the exact opposite. His lungs are very sick and underdeveloped, but his airway looks very good. The reason they are considering a trake for Max is because they feel he will need longer term lung support and having access to his lungs from a location other than his mouth allows for him to learn how to feed from a bottle, have a pacifier, etc., and they do not want the presence of a tube in his throat long-term to damage his airway or harm his vocal chords. These all seem like good reasons, but it is a scary thing for Kate and I. From what we gather, the decision is ultimately ours to make whether we "Ok" the trake or not. This is a difficult thing for us to be faced with, because we believe that God has the power to heal Max's lungs. The trake is a very long-term thing...maybe up to a couple of years before they would remove it. Max could eventually go home with a trake, even on a ventilator as long as he has learned to drink from a bottle...but there are a whole host of reasons why we would no want this. From what we understand, a respiratory therapist would likely be in our house for 8-12 hours a day, we would need to notify the county of the situation so that the roads leading from our house to the nearest ER are plowed before other roads in case of emergency, and the list goes on. Our heads are just spinning right now, and I do not feel like we have all of the facts just yet, but please pray with us that God will reveal the direction we should head in a very prompt and clear way.
Wesley is still on the CPAP at a pressure of 5. He is starting to remember how much he hates it, I think. He has been a little more angry as of late, but usually a head rub from his dad and a song from his mom can calm him down. Or he has a dirty diaper. The nurses have commented on numerous occasions about how easy these two are going to be to potty-train. They do not tolerate even a wet diaper for very long.
We hope everyone enjoys their 4th of July holiday...God bless America.