03/25/10 Decisions

I went to Rounds this morning and asked my 20 questions. While I didn't get a lot of answers at Rounds the Attending agreed to meet with us after Rounds to talk some more and answer any additional questions I had.

When we had a chance to meet later in the day we talked through a number of issues. We're still not sure how to support Eli's and keep his CO2 down so we're going to hold the course and continue to evaluate how he's doing. I'm still a little frustrated that we've spent so much time in the hospital and we don't know what level of respiratory care Eli needs to maintain his CO2 levels but I feel like we have a better understanding of how we want to proceed.

In the morning they drew some blood and took another look at Eli's hematocrit level. It was still sitting around 21. Part of the blood test they do tells us if Eli is making new red blood cells and he is but his overall hematocrit level is just not improving very much. During our conference with the Attending we asked about Eli's hematocrit level and we discussed options for treatment to bring it back up to a normal level. Eli is very pale and his low hematocrit level indicates that he is anemic. When you're anemic you usually don't have a lot of energy and are tired all the time. While Eli has had some good awake time recently we're starting to wonder how much of a negative impact the fatigue is causing his overall system. Is the fatigue making him too tired to breathe deeply and exchange gases efficiently? I think we could make a strong case that the fatigue is causing him to sleep more and we know he has more problems when he's sleeping than when he's awake so we feel like we need to address the hematocrit level.

It looks like we have three treatment options to address his hematocrit levels. First, we can keep giving him iron supplements and hope he slowly recovers, basically following the same course we've been on for the last month. Second, we can give Eli a drug called EPO which stimulates red blood cell growth. EPO is in the news sometimes because it's used as a performance enhancing drug by athletes, mostly endurance athletes, to boost their red blood cell counts. Red blood cells carry oxygen in the blood stream. More oxygen means more energy, more power, and more endurance. If we give Eli EPO we could expect to see some results in a couple weeks. Third, we can give Eli some additional blood (transfuse) from the blood bank. This has the benefit of giving Eli an immediate boost to his hematocrit level but it comes with a few risks. Giving someone blood opens them up to the possibility of infection or disease from the transfused blood and there is a possibility that someone could have an adverse reaction to the transfusion. All donated blood is screened and tested so the risks are very low but they still exist. Fortunately we live in an area (Seattle) with one of the best blood banks in the country. They have never had a recorded case of contamination since they started screening blood many years ago. The risk of a reaction is also very low and even lower in infants. Reactions can occur when the antibodies in the donated blood doesn't play well with the antibodies already present in the body and usually results in fever, rash, or some other benign symptoms. If there is a reaction they stop the transfusion and treat the symptoms and you move on.

Ultimately Patricia and I felt that a blood transfusion would be the best option given the low risk and the immediate benefit. It was a little scary signing the consent form but we did it and they started transfusing blood late last night. All indications point to a successful transfusion. Eli didn't have any negative reaction and his blood pressure stayed stable throughout the process. They are going to take it slow and give him a little blood tonight and some more tomorrow.

Finally, we got the results of the EEG and I had an opportunity to discuss the results with one of the neurology residents today. EEG's are kind of like sleep studies in that the results are somewhat open to interpretation but the general analysis indicates that Eli is still exhibiting brain wave patterns that are slightly dysmature. The previous EEG showed some dysmaturity and some slowness in the brain waves. The newest EEG didn't show any slowing of the brain waves and the dysmaturity had improved but it still wasn't comparable to a child of the same age as Eli. We need to get the Attending's take on the EEG but we felt this was a positive sign. Eli's EEG didn't show a progressively degenerative issue and it looks like he is actually catching up a little. Take that with a grain of salt though since EEG's don't give you black and white answers.