Today was a fairly active day. Kate will likely have more to add because she was involved more in the goings on. I just wanted to give a quick update. The tag team of Joyce, Kathy and Holly were taking care of Henry today. Overall he is doing well. His weight is up to 1330 grams (2 lbs 15 oz). His urine output was at acceptable levels which is good since he was taken off the diuretic Lasix. He probably is still carrying a significant amount of water weight, although he does not look swollen as he has in the past. He is up to 7.5 mls per hour of milk which is still being fortified with formula to add calories. Kate held him for several hours today and I held him for about 2 hours tonight.
In the morning Kate was told that Henry had several apnea/brady episodes overnight. This was a concern because that was really the only sign he gave last time he was diagnosed with NEC (a serious intestinal condition). So at Kate's direction they did an xray of the intestines and also took a picture of the lungs while they were at it. They did not find any signs of NEC or fluid in the lungs. So at this point it looks like he is just being a preemie. Holly explained that before they can go home they have to go 5 days without and apnea or brady. She said they frequently won't do that until the very end of their stay in the nicu. That is still a long way off for us.
Kate is doing an excellent job of being an advocate for Henry. She reads his charts every day and researches every possible condition he might encounter and continually asks questions. It is also nice to have the Joyce/Kathy/Holly team take care of him so often because they really know him by now. Today when Kate was raising her concerns about the increased apnea/brady episodes Joyce was able to back her up by confirming that such an increase was the only sign he gave previously of being sick. On top of that Grandma and Grandpa Kenski are there every day keeping an eye on him. I feel that Henry is in good hands with the doctors and nurses but it is good to keep them on their toes. The staff should all know that when it comes to Henry, they better bring their A game because they aren't going to get away with anything half assed when it comes to this kid.
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Just to follow-up about yesterday. Basically, the last time he had NEC, he didn't show the typical symptoms. In fact, his nurses were surprised. His tummy wasn't hard, he didn't have blood in his stools, and his aspirates weren't alarming in color or size. The only indicator was that he had more As and Bs. This led them to do the septic work-up, which showed infection. That led them to do the x-rays, which showed pneumatosis.
So when Joyce told me yesterday morning that he'd had more As and Bs, I was concerned. Yes, he has them occasionally, but not a lot. Joyce passed the information onto a resident who was collecting the charts (well, they are really large notebooks that weigh more than Henry he does). After rounds, Dr. Catherine Tsai came immediately to check out Henry. Joyce explained the additional As and Bs concern. Dr. Tsai said they could do an x-ray. I asked about doing a septic work-up first, as there is a radiation concern with the x-ray. Dr. Tsai was excellent. She explained that in the event the septic workup came back positive, they wouldn't know if it was NEC. The septic workup shows elevations in white blood cells, but a number of causes can produce such elevations (e.g., stress from the eye exam that Henry was having as Dr. Tsai talked to me). So, I said let's do the x-ray.
Dr. Tsai said that we could continue with feeds until the x-ray came or stop the feeds. Joyce suggested to continue the feeds, unless I had a problem with that. They could go either way. I said to continue the feeds. He needs nutrition so badly, and since he didn't have the other NEC signs, I thought it was the best decision given the odds.
Dr. Tsai also mentioned that Henry's chances of NEC decrease as he gets older. It's also true that once you've had NEC, you are more at risk to get it again.
The x-ray came back clear. They also did the x-ray of his chest which looks like the typical preemie with chronic lung disease. In other words, no surprise. And, because he's breathing, we aren't worried about the lungs at this time.
Dr. Tsai gets snaps for distracting me while the exam was going on. Several nurses have mentioned that the eye exams aren't pleasant to watch. One nurse (I can't remember who) likened it to Clockwork Orange. I did glance over while the exam was taking place. But mainly focused on Dr. Tsai.
I was a little concerned after the eye exam and x-ray, because Henry wasn't himself. He didn't struggle and wasn't feisty afterward. Joyce noticed it too. But she said that sometimes preemies, just like adults, have off days.
I was so relieved when the intestines came back clear from NEC on the x-ray. Dr. Tsai also consulted with Dr. Edde on it. So far, so good.
I very much appreciate Joyce and Dr. Tsai taking my concerns seriously.
As far as a septic workup goes, Joyce said that I could request one if I thought it necessary. But from their perspective, he hadn't reached that stage yet. Septic workup = poking him with needles = an unhappy Henry, so I'm not requesting one yet.
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