Grandpa Kenski visited Henry at 8AM. Grandma Kenski took the 10AM shift. Carol C. was his nurse. Henry was fussing, so Carol had Grandma hold him for a while. When I got there around noon, Grandma was holding him. Henry seemed content. I asked about the blood transfusion. According to Carol, the doctors hadn't made a decision because they were waiting for the lab results.
Around 2:15PM, my mom and I put Henry back into his isolette to change his diaper. Then, I did kangaroo care with him. I asked about the lab results around 3:45PM. When Carol looked at the computer, no lab results appeared. So she asked a resident about it. The resident said she would be right back with the numbers. She wasn't right back.
Jeff came to the hospital. We put Henry back into the isolette to change his diaper around 5PM. Around 5:30PM, the resident Becky said that Carol had mentioned that I had some questions. I asked whether or not Henry was going to have the blood transfusion given his low hematocrit levels. She gave me the same old schpeal about hematocrit levels and how they had to find out the reticulation counts before doing a blood transfusion. I refrained from saying "duh." I simply said that the lab results should have shown up, because Holly had ordered the reticulation tests before she left this morning. After practically living in an intensive care unit for nearly 10 weeks now, I didn't need the basic tutorial on hematocrit levels, which makes the doctors sound knowledgeable because they get to use big words and hence impress parents of patients who then assume that the doctors are on the ball. I would like them to actually take action and explain their decisions.
The lab results hadn't shown up, so the doctor, Becky, went to find out about them. She came back around 5:45PM. Basically, the lab tests had been canceled because the sample of blood was too small, but the lab didn't think to tell the NICU staff that the lab results had been canceled and the NICU staff didn't bother following up on them. So, the doctor put a rush order on the blood test. By the time I left at 6:15PM, they still hadn't drawn the blood yet. Once the blood is delivered to the lab, it will take at least 4 hours to get some results back.
To say that I'm frustrated right now is the understatement of the year. I am angry that we'd constantly been told by many nurses over the past few weeks not to worry about the temperature probe on the isolette (not one nurse, but many). I'm not happy with myself for not checking his temperature when the probe was off. But the staff had been talking about removing the probe because they thought he was at the point where he could go into an open-aired crib. I am angry that no one thought my son was important enough to follow up on his blood tests today. I strongly suspect that if Holly had been on duty, she would have checked. But she can't be there all the time. It makes me feel like we need to keep a 24/7 watch over Henry. When I'm not in the hospital, I need to do research on my own to get myself up to speed on the medical literature because if I don't watch Henry's back, he could get hurt.
Despite the realization that Jeff and I have to stay hyper-vigilant, I'm a bit anxious knowing that our trio, Joyce/Kathy/Holly, won't be be on duty until Sunday. They know Henry well. And, I feel that they really care for him as a person. Moreover, Joyce is a thinker. Some nurses are competent, but they are just trying to get to the end of their shift without thinking beyond it (not our trio). Joyce, on the other hand, thinks about Henry's long-term goals. Under her suggestion, Henry's oxygen percentage has remained about the same, but the flow has been weaned. Today, it was down to .7 liters of flow. Kathy knows Henry's personality well and picks up on details in his body language. She also has a good NICU voice (enunciates well and always speaks softly). And, Holly has been great on the parent front. She communicates very well with me and Jeff and has gone above her job description by giving me her home telephone number. All three are stronger than their good colleagues in other areas as well (e.g., body positioning of baby in isolette, having the milk tube ready before the alarms go off on the continuous feed, checking on the monitors immediately when the alarms go off, keeping their voices quiet, etc.).
Henry was pretty feisty today. He's not fussy without a cause. Henry's actions are logical. When he doesn't want to be touched by the nurses during cares, he desats. When he wants his pacifier, he desats until someone holds it in his mouth. When he's laying on a tube that he doesn't want under him, he desats until he is placed in a more comfortable position. When he doesn't want to be in his isolette, he desats until he is held. And when he's happy, he lifts his eyebrows up or smiles.
Jeff is at the hospital now. He sent me home to relax because I've been running on fumes the last couple of weeks. The stress of the situation really hit me hard the past two weeks. I apologize to all my friends and family for not responding to emails for the last 10 weeks. I do read them though, and I appreciate your thoughts and prayers.
Jeff will give an update when he gets back. I suspect that he is going to do some kangaroo care tonight. I'm sure that would make Henry happy.
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