An Intense Day

It has been a very long day and it is not over yet. The good news is that we have a diagnosis and a plan of attack. An ultrasound of Esther's abdomen this afternoon revealed that the wall of her large intestine is thickened and inflamed. The diagnosis is typhlitis. It is "a life-threatening, necrotizing enterocolitis occurring primarily in immunosuppressed patients." (www.uptodate.com)

Bottom line...Esther has an infection in the wall of her large intestine. It is suspected that her rejection treatment over Christmas, which caused her to be highly immunosuppressed, set her up for this infection. The average mortality rate from typhlitis is supposedly 40-50% due to perforation, bowel necrosis, and sepsis. I don't believe that Esther will be in this 40-50%. Despite having been sick for the last three weeks, I think that we have caught this on the early side. Esther's belly is still soft and she is not complaining of abdominal pain. It is, nonetheless, a serious condition and will likely require 3-4 weeks of IV antibiotics. Until they can culture a specific bacteria, Esther is being treated every 8 hours with a high-powered, broad spectrum antibiotic called Meropenem.

Esther's electrolytes are out of whack, so she is receiving IV doses of both calcium and magnesium. She is also severely anemic, with a hemoglobin of 5.7 (normal range is 13-16). She has been anemic for awhile and was being aggressively treated during her last hospital stay, but to no avail. Now her red blood cell count is even lower. Apparently, the bone marrow shuts down production of red blood cells when there is an infection in the body. Dr. Guillot made the difficult decision to transfuse Esther with two units of packed red blood cells. Introducing blood products is risky for several reasons, but it is an especially unpopular subject in our family because of the possibility of developing sensitivities to additional antigens. Samuel has been unable to get a transplant because of this exact issue. Thankfully, Esther has a lovely, functioning kidney and, Lord willing, won't be needing another one any time soon!

The two units of blood will tranfuse over 6 hours. Esther will have to be monitored closely, so the nurse will be coming in to do vitals every half hour through the night. Those visits, combined with the fact that I will be "sleeping" in a recliner, are likely to make for a very long night.

The intensity level has been a bit high today and got even higher while Esther was in the recovery room after having the PICC line (percutaneously inserted central catheter) placed. They had just started the antibiotics when Esther commented that her heart was flip-flopping and that it was making her head hurt. Dr. Guillot was able to hear it happening and once Esther was hooked up to the heart monitor, we could watch it happening. Suddenly there were a lot of questions. Was she having a problem from the anesthesia? Was she having a reaction to the antibiotics? Had the intestinal bacteria migrated to her heart? They told me that Esther would be going to the ICU so she could be more closely monitored than on Baird 5. Eventually, they realized that the end of the PICC line was too far in and it was irritating her heart. They undid all the bandaging and tape and pulled the line out a few centimeters. That fixed the problem! Big sigh of relief!

It is much too early to predict how long Esther will need to be in the hospital. Hopefully, she will respond quickly to the treatment. Once she is well enough to go home, we can continue the IV antibiotics at home using the PICC line.

Tom and I are extremely grateful that we now know what we are dealing with. It has been a long three weeks of fevers, diarrhea, dehydration, and a revolving hospital door. I spent hours on the computer this weekend searching for possible explanations because I wasn't satisfied with the diagnosis that we had been given on Friday when Esther was in the ER for rehydration. I was told that she probably had a Coxsackie virus. I did not agree. I was concerned that the doctors were content with this Coxsackie diagnosis and would stop looking for something else. When I brought Esther back in to the hospital this morning because her fever was high and her pulse was even higher (160!), I was prepared to insist that they keep digging. Thankfully, they saw the need themselves and worked quickly to arrange further testing. This afternoon I asked our Bible study group to pray specifically that the source of the fevers would be revealed so that it could be addressed. We are so thankful to have such a quick and specific answer to this prayer! God is good!

Well, I started writing this post at 11:45 p.m. and it is now 3:45 a.m. It has been a busy night. While we are waiting for the second unit of blood to arrive, I should try to close my eyes for a bit. I am still running on adrenalin.