Turtle Steps

Elaina is doing so well! All the doctors and nurses are even surprised by her progress. Yesterday they took out her remaining chest tube and removed her pacer wires.She did have a fever all day long, so once again they sent blood for cultures. Her white count was the same, but her CRP (marker of inflammatory response) was elevated. This just makes the doctors and nurses think that there might be some kind of infection brewing. Scary. So far they haven't gotten much back from previous cultures. They did grow something from her ventilator tube, but they are already giving her an antibiotic that cover it. Also, they think that the bacteria is just in her tube, not in her lungs. Because she is on a blood thinner they are not going to get a sample from the end of the tube, they are worried about her bleeding if they did. So, we're still watching and waiting.

I'm going to give some Immunology numbers. I don't expect that these numbers will mean much to anybody but the other DiGeorge syndrome Mom's out there, but this just tells us how capable she would be to fight infections. Keep in mind that these numbers were obtained before her surgery, and they have probably changed since then.

Immunoglobulins: In Feb & March they were 200, prior to surgery they were 80. Normal range is 400 or higher. They gave her some gammaglobulins by IV yesterday to boost her immune response.

CD4 (T4) T cells Elaina 2434 normal range: 1580 - 4850

CD3 (T3) T cells Elaina 3642 normal range: 2170 - 6500

CD2 Elaina 4477 normal range: 3800 - 5300

There are more, but these results are difficult for me to interpret, so I'm not sure what else to post. Anyway, all her values are within the normal range. Some are better than others, but at least she's this good for now.

The doctors are trying to wean Elaina off the nitric oxide, she seems to be tolerating it and should be off of it by tomorrow morning. They have increased her feeds to 4 cc's per hour, and will start going up 1cc every 12 hours as she tolerates it. I heard that she even had a poopy diaper last night! I talked with the Palliative Care Team today and we all agreed that Elaina needs to take "turtle steps", slowly making changes/weaning so that she can continue progressing.

So last night I took a turtle step of my own. I left the hospital. It was SO traumatic (for me, and for me alone...) to leave my little Elaina bug! She is stable, and Ben needed some real Mom time. After much coaxing from my Mom and 2 of the PICU nurses (they plotted and then ganged up on me...), I decided to spend the night with my Mom and Ben at my Grandmother's house in Bountiful. Since Bountiful is just north of Salt Lake and it only takes 20 minutes to get back to the hospital (in good traffic), I felt okay about making the transition. I'm still not ready to be home in Orem (an hour drive south), but I think I'll start spending the evenings in Bountiful for awhile. It was good to be out of the hospital and I'm looking forward to spending some more time with Ben.