15 Jan Update
Again, no true news to report today, but a few changes. First of all, we are no longer on our beloved cardiac floor. It was a truly difficult decision to make to transfer Keegan to the GI service and therefore, the GI floor. The 8th floor (cardiac) is Keegan’s second home (maybe even his first considering we’ve only been home for 50 days since August 23rd). That is both unfortunate in that no child should consider the hospital home and fortunate in that Keegan feels so comfortable with his nurses and doctors there. You could literally see his body relax when we got to the floor Sunday after being in the ER. Gray and I are also comfortable and at home there because we have become such good friends with almost everyone on the cardiac floor. We trust them implicitly, and they trust us without doubt. It makes all of our lives easier. Of course, it doesn’t help at all that the GI floor is in the old Parkland part of the hospital that, apart from some computers and a TV, hasn’t been updated since it was built in the 1960s. It is disgusting down here. Thank God the nurses are nice! Still, we decided to make the move because our primary GI doctor assured us that Keegan’s problems could be resolved much easier here with their entire team surrounding Keegan. And as expected, Keegan’s already making girlfriends down here too! We have been in close contact with his primary GI, although he is mainly at the Legacy campus now. The attending on the floor for the next two weeks is very motivated to help Keegan and is also keeping in close contact with Keegan’s primary.
In other health news, Keegan’s second port culture grew positive for an infection, but we’re not sure yet if it’s the same staph. We will continue to draw cultures daily until they are negative and will continue the antibiotics for seven days after the first negative culture. Keegan had a sedated echo this morning to check that none of this infection has gone to his heart, but we haven’t heard anything yet. His neutropenia is not responding to the GCSF yet. In fact, it was worse today. Hem/onc has decided to increase his dose to see if we can’t get him to respond faster. Still no fever, so that’s a positive! His red counts are still hovering over the transfusion level thanks to the epogen therapy, despite the large amount of blood being drawn daily. All of his stool cultures have been negative for every virus and bacteria in the book. We are four days into “gut rest” (nothing by mouth/tube except meds and water), and Keegan continues to have the same amount of diarrhea as always. We still need to run some more stool tests to help limit the range of things that could be causing this diarrhea, so we’ll hopefully get those done soon. Lastly, he has his monthly pentamadine (breathing) treamtent this afternoon.
So, I’m sure you’re wondering what the doctors are thinking is causing all this. I wish I had an answer for you. We have some fresh eyes and brains on the case, and we’re hoping for a good result. We are asking for an immunology consult because there is strong evidence that the inflammation in Keegan’s system is an autoimmune disorder. We are also looking for an endocrinology consult to make sure he doesn’t have a hormonal imbalance that’s causing his system to work harder than necessary. If all else fails, we’re discussing having the GI service refer/transfer him to another facility for a second opinion. There are still lots of diagnostic tests we can run and more stones to turn over before we reach that point. No one here is giving up on Keegan yet.
Keegan’s spirits remain high. You would have been shocked to learn otherwise, right? As I write this, he has just woken up from a nap and is thrilled with the new toys Child Life brought for him to play with. He can’t stop putting the shapes from one bucket into the next. Ahh, don’t you wish you could be so simply amused? =)
Thank you for your prayers, love, and support. I can’t imagine our life without each of you. You give us hope and strength when we feel we can’t take any more of this. We look to our Lord, our family, and our friends when our burdens become too great. We have faith that He is with us and has sent His angels to watch over us. We can see that most clearly when Keegan smiles despite the pain, discomfort, and tediousness of hospital life. This may not be the life we had envisioned for our family and our son, but we know it is one carefully planned and accounted for by Him. We embrace it despite our heartache and frustrations. Thank you for helping bolster our faith and spirits with your prayers and love.
Maddie
p.s. Please, please keep our dear friend, little Miss Avery in your prayers. She was admitted at Legacy for a fever last night. Like Keegan, even the smallest infection can be life-threatening for her. Your prayers for her health and comfort are needed and appreciated for her. Thanks.