Garrin had what seemed like a really good day yesterday until about 5:00 pm when things went off the rails. It got to the point last night where there wasn’t really anything that the nurses or nurse practitioner could do for him. His little lungs just weren’t able to oxygenate even at the highest concentration of oxygen.
At least in my mind, I had been really strong through all the alarms most of the day, but they really started to wear on me this evening. Each time the monitor alarmed telling us that he was desating, causing the nurse to turn up his oxygen again, I felt like I was being stabbed in the chest. Each time his O2 has been this high, he has come out of it, but I keep thinking “what if he doesn’t this time?”. These thoughts raced through my head as I sat waiting for the next scheduled lab draw.
I finally had to step out. As I was eating some supper in the family gathering area, a young mom I met yesterday happened to come in. We cried together and prayed together, and she reminded me that there is nothing I can do, that I have to give it to God and trust him to give me strength. I am trying so hard to do that, but at times, I can’t even breathe I’m so afraid that I am losing him. I also spent time in the chapel this evening. It’s a gorgeous, serene place to pray, even in the dark of night. I feel so at peace there, in the house of God, away from all of the alarms.
By 3:30 am or so, our favorite nurse who was not on Garrin’s case last night, was in Garrin’s room crying with me, praying with me, and helping me to explain the situation to my husband who was hours away with our older children. We decided that he should come at that point, so he loaded up everyone in the van and got to the hospital around 6:00 am. Garrin had regrouped a little by then. He had several chest X-rays and labs done last night and his health care team couldn’t figure out what was causing him to decline so severely and for such an extended period of time. In conversation with the nurse practitioner this morning before rounds, I mentioned that I wasn’t sure if Garrin was going to make it through the night. Her response was that she’d being lying if she said she hadn’t thought the same thing.
After rounds, our nurse was finally able to start slowly weaning Garrin’s oxygen. He was on 90%+ oxygen until he received his first steroid dose and has gone down more than 25% since. The doctor did not anticipate a dramatic change before Sunday as it takes awhile for the steroid to work. In addition to receiving the steroid today, Garrin also received another blood transfusion, and he got his chest tube and two umbilical lines taken out. The nurse practitioner placed a PICC line to deliver IV fluids and medications, and he will now have necessary blood draws from his heel.
As if that wasn’t a big enough day for our little sweet, he also had his second head ultrasound. We were anxious to get these results as the first ultrasound revealed a grade 2 brain bleed. I was able to track down the doctor this afternoon as the nurse practitioner was finishing with the PICC line to inquire about the results. He indicated that he had been sweating the results as well. I may or may not have been panicking at this point in the conversation. However, good news: the ultrasound did not detect any additional bleeding in Garrin’s brain beyond the original grade 2 bleed. The doctor mentioned that he was pleasantly surprised as he had expected it to be worse.
The last 24 hours was tough. At one point we thought we were losing the little boy that we prayed for, and while that could very quickly still happen, we were relieved to have another day with him and good news to boot. The staff here have been trying to prepare us for the NICU roller coaster since Garrin arrived, but nothing could have prepared us for a day like today.
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7