We woke up to find Mr. Happy sleeping on a wedge pillow. Apparently sometime during the night the nurses and doctor decided to elevate him to perhaps help his breathing. We talked with the dayshift crew and find out the plan for the day. They decided they wanted to rule out anything to do with his heart. It seems that sometimes babies will have hearts that are too large for their bodies, and this can cause most of the symptoms Mr. Happy had. So they brought in an X-ray machine, and also performed an EKG and an Echocardiogram. Then we had to wait for the results.
Saturday was much the same as Friday in terms of watching and waiting. The Geek had to leave for every meal and go to the cafeteria, but they were providing meals for me, as I was still – technically – a nursing mother. I continued pumping and dumping to keep my supply up, and we changed diapers, updated people via phone calls, and waited for news from the medical crew.
A few times during the day, we were told that if his respiration didn’t start improving, they were going to move him into PICU. The determination would be based on what level of O2 he was on, and how many breaths per minute he was taking. Since arriving in the hospital, he had been on Hi-flow oxygen, which means that it is designed to shoot out at high speeds in order to bypass any nasal mucous and make sure it arrived in the lungs. He was taking 100% oxygen, at a rate of 6. If he could get down to 21-30% oxygen (21% is ‘room air’) and a rate of 4, he would be released to a regular room. If he continued to need the higher levels and rates, he would be moved to the PICU. Due to our long history with Mr. Charm and, now, Mr. Happy, in hospitals, this wasn’t as scary a newsbrief as it might have been. Still, we didn’t want that to happen.
Saturday evening, they finally agreed to put in a feeding tube. He hadn’t eaten in so long, and was crying in hunger. We were anxious and frustrated that we couldn’t feed him, even as I was pumping between 4 and 11 ounces at a stretch. The tube went through his nose, down his esophagus, through his stomach and straight into his intestines. The poor little guy would finally be getting fed, but he wouldn’t have the feeling of satiety that you get from having food in your stomach. Still, it was better than nothing. And finally my breastmilk was being put to use!
Shortly after the feeding tube went in, L called me in tears. It seems that while she was still willing to watch Mr. Charm for us, she was getting terribly concerned about her ability to do so safely. One of her grandsons has special needs of his own, and she was terrified that Tuesday-Thursday, when she had her grandsons’ with her, she wouldn’t be able to pay enough attention to Mr. Charm and he would suffer for it. She was still willing to watch him on Sunday night, Monday, Thursday night and Friday, which was as long as we were currently coordinating care for, and she felt miserable that she was having to back out on us at a time like this.
I assured her that it was no problem, that I appreciated her even being willing to consider it. Mr. Charm is a wonderful child, but the food allergies are scary, and I totally understood her fears. Frankly, I was amazed that she had agreed in the first place.
Still, that left us scrambling to find a new plan. We asked at the nurses desk, and they called the hospital social worker to see if they could find room for us at the Ronald McDonald house. Siblings under age 16 are not allowed to spend the night at the hospital, so the idea was that the Geek and Mr. Charm would be with me at the hospital from 9:00 a.m. to 9:00 p.m., and I would stay with Mr. Happy 24/7. They came back in a few hours with the answer: the Ronald McDonald house was full. They gave us a list of hotels in the area that offer discounted rates to family members of Children’s patients, and we decided it might be cheaper if we could find one of those weekly rate hotels, since we didn’t know how long we would be in Little Rock.
So Saturday evening was a whirlwind of phone calls trying to figure out what to do and how to do it, as Mom had a flight at 2:30 p.m. on Sunday that she had to take.
Finally we decided that the Geek would drive back home Sunday morning in the car, and drive back to Little Rock with Mr. Charm in the SUV so we (and all our stuff) would fit when Mr. Happy was eventually released.
The tests on Mr. Happy’s heart came back negative; he has a perfectly perfect little heart. So, keep watching and waiting, and Doctor L (the doctor coordinating Mr. Happy’s care) would tell us in the morning what the next phase would be.
I pumped and dumped, we unwound and went to bed.