Emmett continued to avoid the cath lab for a week, spiking another fever that led into the weekend. Over the weekend, the pressure in his lungs dropped to about half of systemic, which was the lowest number we had ever seen, and it stayed that way into Monday morning. After a bit of debate, the powers that be decided that the balloon angioplasty was still the way to go, to eliminate the coarctation as a possible contributor to the PPHN. Monday afternoon found Emmett wheeling down the hallway for a 5 hour procedure, during which I was updated numerous times by a variety of nurses and doctors...some of whom just checked in on him during the procedure out of curiosity. The balloon portion of the procedure went fabulously, taking the coarc out of the equation for the time being. The cardiac surgeon reported that the pressure was still holding in the 40's and began to discuss a plan for weaning Emmett off of the various medications that he was on and working toward sending him home. It was the first time that the "H" word had ever been mentioned, and I was on cloud nine for the rest of the day.
It took Emmett 3 days to wean off the the nitric oxide (dependency is always an issue with that medication over long periods of time) during which time his lung pressure went back up. He stayed intubated after the procedure, which irritated his lungs (and irritated him in general) and at almost four weeks was not as easily sedated. When the nitric was finally weaned, they were able to extubate him and Dad was able to hold him for the very first time. We began holding him every time that we visited and although the lung pressure did not seem to be improving, Emmett himself began to look like he was really getting better. He was happy to be eating again, happy to be held and extremely happy not to have a tube down his throat. But another weekend went by without improvement in his lung pressure and the doctors began to get frustrated once again.
With Dad on vacation for the week of Thanksgiving it was easy to take all the kids for multiple visits to the NICU. On the Wednesday before Turkey Day, we found ourselves at the zoo with them, after a lovely visit that morning to the hospital. When I received a phone call from the cardiologist, I sent Brian off with them to get ice cream, expecting to hear once again that the day's echocardiogram was like all the rest had been and that the pressure was the same. Instead, he told me that they had decided to send Emmett up to Stanford to be treated by Dr. Jeff Feinstein, the foremost cardiac pulmonary hypertension specialist on the west coast. I suppose with a little warning I would have been more excited by this news, or at least resigned to it, but without knowing that they had even been talking about it, I was instantly in tears (quite unsettling for Dad -who knew who I was talking to and watched me go from relaxed to distressed rather quickly). I sorted my way through the conversation and realized that nothing with Emmett had actually changed, the doctors had simply come to the conclusion that their knowledge of PPHN was not enough to help Emmett. Dr. Feinstein, they were certain, could find the way to fix him...if he was fixable...and they believed he was. They did not want to wait until he was not.
Thanksgiving morning found us in the NICU, holding Emmett and waiting for his transport team from Stanford to arrive. It was an incredibly frustrating experience since the communication with us was really bad. We had not been told that he was leaving in the morning, and we had also not been told that he was flying instead of driving. The very worst part was when the pilot asked me if I would like to accompany him. Dad and I were both in shock...we had been told that parents are never allowed to tag along in an ambulance...let alone an airplane! I was completely unprepared to fly on a moment's notice...had not packed, pumped, not even sure if I had my wallet with me. We had planned to have Thanksgiving dinner with the family, go home and pack, and head up to Stanford that evening. I wanted so badly to say yes but knew that Brian would have to pack all the kids, himself and my stuff (for an undetermined amount of time). So I declined....which broke my heart into tiny pieces. Looking back on it, I should have just gone.
After the holiday feast, we piled everyone in the car and headed up to the Bay Area, meeting Noni and Grandpa around midnight to trade cars so that they could take the sleeping kids back to their house (about 45 minutes south of Stanford) and we could continue on up to Lucille Packard Children's Hospital. We managed to find our way to Emmett's new bedside, where we found him looking beautiful and already dealing with changes in his medication. Right away we were briefed by a nurse practitioner and cardiologist, who explained the changes in the medication and gave us some idea of what their plan was for the next few days...which mostly involved getting him off the many medications that he was still on and seeing what his body could do. We have found that their approach is very much in line with our thinking...if he looks like a healthy baby then treat him like one...until you have a reason not to.
After 4 days at Stanford, Emmett has made great strides. He is off all of the medication that he was receiving through the ventilator or PICC lines, so he has a nasal cannula and receives his meds orally. He is learning to eat with a bottle and doing quite well for someone who had no nipple experience for the first five weeks of his life. He has had two echocardiograms, both of which showed that the pulmonary hypertension is better. He is gorgeous and mellow and all the nurses love him. Everyone at Stanford is young, beautiful and ridiculously smart. They would be easy to hate if they didn't have such fantastic personalities and they clearly are attached to Emmett.
He had a procedure today call a Cath Angio, where dye is injected through an IV and then the heart/lungs/veins/arteries are all mapped with a high resolution scanner. It is much more detailed than a regular cath (and much less invasive) and the result is a 3-D reconstruction of the respiratory system located in the chest and abdomen. Emmett currently has a significant difference between the blood pressures in his upper and lower body, so they suspect that he may have a blood clot somewhere in there or a constriction of some kind. I expect tomorrow will be a big day in discovering what's going on inside that little body and coming up with the next step in treatment.
As always, we are grateful for the mountain of prayers that are being offered on our behalf. We cannot adequately express our gratitude for those who take care of our children, bring food and treats, send cards and emails and above all, offer prayers on our behalf. The hospital staff are constantly amazed by the level of support that we have and I am sure that their inspiration comes, in part, from the prayers that are offered on their behalf as well. As hard as it is to have a family living in two places at once, we are certain that Emmett is where he needs to be and thrilled at the progress that he has made.
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