Avoiding the Operating Table

We are starting to see a few encouraging signs with Lexi now that the weekend has arrived. Although she still was running a fever off and on throughout Fri night and early Sat morning, her intestinal tract is showing positive signs for the first time in nearly a week. Not only are doctors hearing appropriate sounds and signs of life in her intestines, but this morning's chest x-ray revealed a little less distension as well. Only tomorrow's CRP test can give convincing evidence that her infection is being battled effectively, but there are some small signs that suggest we might finally be heading in the right direction.

We also were pleased with the results of a conversation with Lexi's surgeon today. He said that had Lexi's chest x-rays continued to worsen, it might have been symptomatic of a perforated bowel, or a portion of her intestinal tract dying. Both scenarios would have required Lexi go back to the operating table, as the infection and issues would have lied inside the walls of her intestines. However, if the distension in her bowels continues to go down as it did today, and if her CRP levels on Sunday are down, it will offer further evidence that the infection likely is in her intestines, but not inside the intestinal wall. In the interests of keeping our daughter off the operating table, we obviously were pleased with the odds shifting in favor of the type of infection which is treatable with antibiotics, repogle tubes, and tylenol , rather than with reconstructive surgery.

Hangin' in There

Lexi's CRP levels on Friday came in at 12.5. That's essentially unchanged from her previous reading of 13 a few days ago, but since we're trying to be glass-half-full people, we're going to stake claim to the fact her levels have gone down! Clearly the goal was a more drastic reduction in her CRP levels, as that would have suggested her current cocktail of four antibiotics was winning the battle. However, we still take comfort in the fact it hasn't escalated at the alarming rate found during the previous two tests.

Other tests pretty much have maintained the status quo. Her Friday chest x-rays showed the same high degree of distension in her intestines and abdomen. Consequently, doctors increased the size of her repogle tube, which suctions air and secretions out of her stomach and avoids their overflowing into her lungs. Hopefully this will help combat the distension issue and allow her abdomen to begin going back to normal. She also received another blood transfusion this afternoon, which should give her a little more color and some more energy to fight off her infection.

Some Positive Signs

Although we still don't have the answer to the million dollar question related to the source of her infection, Alexis appeared to look a little better Thurs night. Her temperature was back down to 98 degrees, she was not quite as pale as she had been, and she appeared more comfortable and relaxed than she had for the last several days. We recognize that parents' vibes on how their child is feeling probably doesn't count for much in the medical community, but at least it made us feel a little bit better when leaving the hospital Thurs night.

Blood cultures still have been unable to identify her infection, but tests last night offered further evidence that the infection is likely in her broviac (chest) instead of her ostomy (intestines). This would be good news, as a broviac infection likely can be treated effectively with antibiotics and rest, whereas an infection in her GI tract likely would require immediately surgery. Lexi's surgeon ran tubing through her ostomy opening and up into her small intestines and found no blockage, lending support to the theory that the infection is not sourced there. However, chest x-rays on Thurs showed her intestines as even more distended than the day before, which is visible even to the untrained eye since her stomach looks expanded and painful. Her doctors said her chest x-rays and other test results were very concerning and not at all normal, but not worrisome enough to warrant surgeries to open her up at this point. We obviously are very grateful Lexi is not an emergency case at the moment, and the plan still is to continue frequent blood cultures and chest x-rays aimed at identifying her infection and its source. A third CRP test to gauge how advanced her infection has become also was scheduled for early Friday morning, so we will be anxiously awaiting those results as well.

Still Searching for Source of Infection

Despite frequent blood cultures and other tests, we have yet to discover the source of infection causing our little one some trouble this week. Lexi appeared to be doing better early in the day on Wed, but by late afternoon and early evening her temp was back up to 101 and she was pretty unresponsive. A diaper change and sequence of tests around dinner time made her alert enough for a quick photo, but she was out of sorts for most of the night. As you can see, she is back on oxygen and is back to IV feedings until she can successfully fight off her infection.

After a couple days on general antibiotics, we hoped her infection would have subsided. After measuring her C Reactive Protein (CRP) levels, an indicator of inflammation and gauge of disease progression, at roughly 6 early in the week, we expected a reduced measurement Wed night. However, we discovered the exact opposite, as her CRP levels spiked to over 13, indicating her infection has worsened and antibiotics treatments have been ineffective to date. The NICU nurses immediately added some more general, broad-sweeping antibiotics to her IV, while also expediting additional blood cultures aimed at diagnosing the specific source of infection. Hopefully her blood cultures and doctor visits on Thursday will determine the type and source of infection, as that would foster a selection of antibiotics and other treatments which could better target her issues.

Unfortunate Infection

Well, our little girl has had a rough couple of days. She has an infection somewhere in her body that is complicating matters. The doctors started her on antibiotics right away and are trying to determine where the infection is. Their best guess, until tests are back, is that her broviac has become infected. The other likely culprit would be that her ostomy or intestines have become infected post-surgery. However, there is the possibility that we might not be able to determine where the infection is. Right now, they have suspended all eating, put her back on oxygen, and have given her some blood transfusions. She is pretty tuckered out and just sleeps a lot, which we are hoping gives her the energy to fight this infection. Bottom line is that we are hoping the antibiotics work, and she gets back to normal in the next few days. We will keep you all posted...

Bad Things Come in 3's

My Grandma Graue always told me bad things come in 3's. As a former baseball player, I am somewhat superstitious, but I didn't think they would come this bad or quite this close together. After being told our first child needed to be delivered five weeks early and rushed to the ICU to save her life, and then being told a job I loved at A-B would be eliminated in a few months in the aftermath of a hostile takeover, we received even worse news this weekend which put the first two in perspective.

My close friend Nick Huber, who went to Luther College with me and was an usher in our wedding, passed away on Saturday. He courageously fought ALS (Lou Gehrig's Disease) for several years as one of the youngest ever to be diagnosed with the condition, but ultimately succumbed to the disease on Saturday. We had the good fortune of seeing Nick and his wife Ann less than a month ago, and Nick appeared to be doing well all things considered. However, they were involved in a bad auto accident on the 4th of July... ironically the same day Lexi was rushed into her first surgery... and Nick's condition did not allow him to fully recover.

We're not looking for sympathy with this post, but we wanted to send out a heads up that we might not be blogging about Lexi for the next few days while we figure out who will travel to NW Iowa for the funeral, who will stay with Lexi in the NICU, etc. All signs point to Alexis doing well at the moment, so please don't assume the worst if you don't hear anything in the early part of this week.