Tuesday, July 14, 2009


Emergency Room Sign We had our first Emergency Room visit at Cincinnati Children’s. We arrived at 11:45 am and were there until about 9:30 pm.  As soon as we arrived they looked Elias up in the computer and knew exactly what protocol to follow due to the Fanconi Anemia diagnosis. The Bone Marrow Transplant (BMT) doctor on call was paged and they gave directions. It was great to know someone who actually understands FA was calling the shots. The experience was very relaxed and positive for the most part. Towards the end we were getting a little antsy having been here for nine plus hours. Things were just moving slower for some reason, or at least it appeared that way. The biggest issue was trying to obtain enough urine for a urine analysis and urine culture. Then of course we also had to wait for the labs, including blood. They could not get Elias catheterized to obtain a sample and even had someone from urology come down to attempt for a third time. The clean catch bag method was yielding more urine on the bed sheets than in the bag because it would not stick to Elias’ skin properly. They finally got enough for a urine analysis, but not a culture. Rather than continue since it was a losing battle obtaining it, the settled for the UA and sent us home per the BMT with a follow-up for the blood and urine test on Monday. Before we left the BMT doctor ordered a dose of Rocephin which is an antibiotic used to treat immunosuppressed patients who have fever while waiting for blood cultures.  

We have spoken with the FA clinic this morning about the test. There does appear to be something going on in terms of infection, but not exactly sure what. Dr. Mehta was going to look more closely at everything after rounds and decide what, if anything we would do for treatment. At this time we are still waiting to hear back from them with more information. Elias himself seems to be feeling a little better. He is no longer running the high fever and is a bit more playful in spurts, with sporadic smiles sprinkled through. That always helps us get through his illnesses and issues. It just never ceases to amazes us how it always happens like this on weekends and Holidays, hahaha!

Our initial ER experience at CCHMC lived up to and exceeded expectations in some cases. As one of our FA parent friends put it on facebook, going to the ER always stinks, but it is an experience like no other. That was very true and very reassuring knowing there will be many more visits to come unfortunately, it is just a fact of our life. It is yet another reminder that this decision was the right one. I know we keep saying that and it is not like we have ever doubted it, but in life we are all constantly reminded of the bad decisions we make. You know the old saying, “ You have to live with your decision no matter what.” It is great to every now and then be reminded of a good decision, something positive that stands out and says this would not have happened if I had not made this decision. That is very comforting when there is so much going on.

Here is an update further, since I have not been able to post this yet, I will just include it. They have placed Elias in the stronger antibiotic, cephalexin. He will get this for 10 days. We still have the blood culture growing, but so far that has not shown anything specific. This prescribed medicine will cover a good bit of infections since we are not able to identify exactly what it is. He seems to be feeling better right now. Still some issues playing for long periods, but he is smiling some again. I’m sure each day will bring him closer to normal. We also received a phone call from the colorectal team. They took a phone history and the team will meet to determine what they need the next step to be. This is the team that will do the pull-thru surgery to repair the imperforate anus. We will keep you posted on that when we know more. Finally, Elias will have another developmental evaluation on Thursday. This is a routine testing for placement and identifying services with the state. It is always curious to see how the different evaluators grade him and his progress.

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