My, my, my. Today was a toughie. It started with attempts to place a new feeding tube through Elizabeth's nose, through her esophagus, her stomach and into the intestines...at 4 am. You can guess what she thought of that! After an hour of recovery, they changed the IV line that enters her femoral vein near her groin...also fun. She got to sleep until early afternoon, when we got her out of bed for me to hold her. While she sat fussing on my lap, I noticed that the fluid draining from her side was frothy and noticed the sound of air escaping around her chest tube. In case you are wondering- that's not good at all. I called in the nurse and asked her to get the surgeon and some other staff. Squeamish folks stop here! The chest tube had been moving around enough to stretch the opening into her chest and the stitches holding it in place had broken. We caught it just prior to falling out (which would have been a disaster). Ideally, the chest tube would have been pulled out and a new one placed. Unfortunately, Elizabeth's body is quite small and the available spots to put the new one have already been used up. So they cleaned the tube and area as best they could and sewed it back into place. Now we hope it doesn't become infected! She became anemic enough overnight to require another blood transfusion, they still haven't managed to get the feeding tube passed her stomach, her groin IV isn't allowing them to draw blood through it (one of its main functions) and the same IV seems to be obstructing venous outflow so that her left leg keeps turning slightly bluish.
As you might have guessed from the lead-up, tonight's prayer request list is somewhat lengthy:
1. We're bummed. Today feels like four steps backward and it seems like our last step forward was quite awhile ago. We need better strength and stamina for this ICU roller coaster.
2. Low red blood cells: the constant decline in her red blood cells mostly comes from the blood they need to constantly remove for cultures and tests. She's now required two transfusions. The most recent drop in her count was faster than expected and we're still not sure where its going.
3. IV access: the IV line in Elizabeth's groin is very important and is supposed to do three things. First, allow several different medications and solutions to be administered simultaneously. Second, allow easy drawing of blood samples without have to stick Elizabeth with a needle. Lastly, it allows them to measure her venous blood pressure. But it's not working for drawing blood currently and so every test Elizabeth needs requires finding another vein and putting her through the pain of sticking her. The IV line is also a major infection risk. Since they changed the tubing this morning, her leg turns blue in certain positions. Pray that they will know whether to find a new site or stick with this one.
4. Infection: Elizabeth continued to have fevers today and her white blood cells are still very elevated (a sign of infection). A clear source for this has not yet been found. We also found out that she will need at least 6 weeks of intravenous antibiotics for those blood bacteria she had last week. What this means for our hopes to bring her home before I go back to work is unclear.
5. Chest tube: We used to be ultra-concerned about how much fluid was coming out. Our new worry is whether the chest tube itself its coming out! We're very nervous now about holding her, afraid of dislodging the stitches. It could also be the source a new infection since it was exposed to the air.
6. Nutrition: Tonight, they're going to try a fourth time to get a feeding tube past the stomach. Because the tube passes through the nose and down the throat, it rubs constantly and produces a nearly continuous gagging sensation. Babies get used to this eventually, but it is very uncomfortable at first. The plans to start feeding her have been delayed now three days as a result of not getting it to the right spot. Pray that it gets there and that Elizabeth will get used to its presence quickly.
Enough for now. It's easy to lose perspective late at night. We have truly experienced the fact that God's mercies are new every morning. And we're still trusting in his faithfulness.
Matt and Sara