Apparently, a one-night stay in the hospital translates to Luke into two weeks. Luke’s heart catheterization was two weeks ago tomorrow, and he’s still in PICU.
Sorry for the long wait between posts, but I already wrote a post last week that got erased. It’s taken me a week to find the energy to write another one.
On Monday, the 11th, we brought Luke back to Medical City for a heart cath (remember, that’s an invasive test in which they insert a catheter into one of Luke’s major blood vessels and send it to his heart to take pictures and measure pressures, etc). After a slight delay in getting the cath started, Dr. Kort came out about 45 minutes before we expected him. He told us that during the procedure, Luke’s heart went into a very dangerous rhythm. They had to use shocking and chest compressions to get him out of it, but he returned to a normal rhythm. I wish that was the end of our problems, but it was just the beginning.
The pressures in Luke’s heart are borderline, not exactly what they wanted to see, but not dismal. Also, Luke’s pulmonary arteries (the key to doing his next surgery – called the Glenn) are about half the size of a normal 8 month old. Dr. Kort (heart cath guy), Dr. Kao (Luke’s cardiologist), and Dr. Mendeloff (heart surgeon) conferred and decided that although Luke is not an ideal candidate for the Glenn surgery, it’s more dangerous not to do it. Luke’s arteries haven’t grown at an acceptable rate with his first shunt, so it’s unlikely that they will grow if we just replace the shunt with a bigger one. On the other hand, Luke’s body is beginning to outgrow the shunt he has, so something must be done. It seems that although the Glenn isn’t a perfect option, it’s really the only one we have. Dr. Kao told us that because of the anatomy of Luke’s heart, he’s likely going to have a very tough time after his next surgery as his body adjusts to the new way his heart pumps blood to his lungs. I don’t know exactly what hurdles we’ll have to face, but there are a lot of things to fear.
I stayed at the hospital that night with Luke. As he drifted off to sleep and throughout the night, instead of his heart rate slowing to the 100s as it normally does, it crept up to the 140s and 150s. The cardiac intensivist on call, Dr. Stromberg, said he didn’t know why his heart rate was getting faster, but he suspected an infection, and he assured us that Luke’s heart was in a normal sinus rhythm (not the arrhythmia we fought for 5 weeks after Luke’s first surgery). About 4:00 am Luke’s o2 sats started declining, and it didn’t make any difference if he was on the ventilator or off. He began working extremely hard to breathe. The docs put Luke on some new medication and hooked up his ventilator to nitric oxide to help him breathe better. It turned out that Dr. Stromberg was right about the infection. Luke came up positive for CMV (Cytomegalovirus). It’s a common virus, but did a number on Luke. They decided not to pursue anti-viral drugs because by the time they figured out what the infection was, Luke had gotten through the worst of it (so we thought), so the drug had more cons than pros at that point. They gave him a healthy dose of antibiotics because something pneumonia-like was growing in the trach culture. Over a period of 8 days, they eventually weaned Luke off the nitric oxide, down on the oxygen, and were able to put Luke back on his home ventilator. He was feeling quite a bit better when they discharged us on Tuesday morning.
Almost as soon as we got home, Luke started declining. Before his heart cath and the infection, Luke was able to be off the ventilator all day and used very little oxygen. At home, Luke would not tolerate being off the ventilator for more than a minute, and we were continually increasing his oxygen to keep his o2 sats at an acceptable level. In the morning he was running a fever, had lots of thick lung secretions, and was working extremely hard to breathe. I went ahead to try and see some clients that I hadn’t been able to see the week before, and David stayed with Luke for the morning. He called Dr. Stromberg at the PICU. He suggested that we tweak a few settings on Luke’s vent. After a few hours of Luke continuing to decline, Dr. Stromberg told us to bring Luke back to the hospital. David interrupted my counseling session to tell me that we needed to take Luke to the ER.
Luke tanked on the ride to the ER. David drove, and I rode in back with Luke. His o2 sats declined steadily and bottomed out in the 30s. Suctioning and 4 liters of oxygen couldn’t get them to come back up. So I played EMT and bagged Luke (oxygen bag giving him breaths through his trach) there in the back seat of the car. To my horror, Luke had a seizure. I was surprised how calm I was able to stay, though of course I was extremely worried. After several minutes of bagging, Luke’s sats came back up to the 70s (normal range), and I was able to put him back on his ventilator.
When we got to the hospital, I took Luke in to the ER while David parked the car. Luke was stable, so they put us in a room. They got x-rays and blood work, and got an IV started after the second stick (not bad). To our relief, Dr. Stromberg came all the way down to the ER from the PICU to see Luke. They decided to admit him back into the PICU, and we got up to our room on the 5th floor (home sweet home) about 6½ hours after we arrived at the hospital.
The only culture that came back positive for infection was the CMV culture (tell us something we don’t know). Luke did have some yeast growing in his trach, but we’re told it’s unlikely that it’s responsible for making Luke’s lungs so sick. They started treating the yeast infection with an antifungal medicine, and it’s a good thing that the infection was caught before it crossed over into Luke’s blood stream. Evidently, a yeast infection in your blood is seriously bad news. Praise God for all your prayers. I’m convinced that God heard and stopped the infection from traveling to Luke’s blood.
Probably this second round of illness was simply due to not having time to get over the infection in the first place. Luke has improved markedly with rest, antibiotics, antifungal medication, and time on the hospital ventilator. They have weaned Luke’s oxygen down to almost a normal level, and he’s now back on his home vent, though with increased breathing support settings. We haven’t attempted to take him off the ventilator at all, he’s still requiring quite a bit of breathing support. Luke’s been awake a lot of the day, playing with his jungle and smiling. He is pretty close to being back to his normal laid-back self. I missed that sweet little smile. It was agony sitting next to Luke’s bed and him just looking at me pitifully, as if to say, “Mamma, help me. I don’t feel good.” There was nothing I could do but wait and pray.
We expect them to discharge Luke early this week, Monday or Tuesday. Because of this illness, Dr. Kao thought it would be wise to move Luke’s surgery back a few weeks. We’ll return to Medical City for the Glenn procedure on Thursday, Feb 18. Like I said earlier, there’s a lot to be afraid of. This surgery is going to be risky. It’s going to be touch-and-go for awhile. We’re scared. Part of us wants to jump in and get it over with, but part of us is dreading Round 2. Please pray that Luke continues to do well. We need this time at home before his surgery to be a time of renewal, rest, and courage gathering. Thank you all for your prayers and your encouragement. We love you.
Rachael, David, and Luke
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