Day +11

What a difference a week makes. Beginning Monday Day +3 through Wednesday Day +5, Chloe was just miserable with pain. I really struggled to get her the help she needed and it took quite awhile to finally address her pain and get her more comfortable. The downside is that this heavy dose of morphine makes her sleep most of the time. So she was less active late in the week.

The next phase of problems began Friday Day +7. That evening she began having respiratory problems – fast, labored breathing, moaning and wimpering. It was a long, difficult weekend, with so many challenges – both physically for Chloe and for us, in dealing with the staff and trying to advocate for her and get her the help she needed. Sometimes our expertise in her underlying condition is met with negativity as we assert ourselves on her behalf, ask the tough questions, demand to be kept informed and involved, and remind everyone that she has concerns that are "independent" from the transplant process that may make her treatment different. There was a point where her condition was so serious that there was discussion of taking her to ICU. However, we learned that MDA does not have the facility to care for her (no children under 3) so we would have to transfer to Texas Childrens or Hermann for ICU care.

This was news to us. For the time being, her respiratory status has improved some so that is good news, but Dennis and I remain on constant alert and continue to challenge her doctors to provide her care appropriate to her. We admit that it’s a learning process for all of us and hope to do better as we move forward.

Problems she’s facing include impaired liver and kidney functions; enlarged liver; too much fluid in her body; low platelets (and the inability to absorb them when she gets transfusions); difficulty clotting; low hemoglobin which leads to high heart rate; fluid in her lungs; terrible mouth sores (as well as esophagus and stomach); lots of mucous in her stomach which leads to vomiting; and there are more. Also, she lost her hair on Day +5. It started coming out the night before and by the morning it was coming out in gobs so I just ran my fingers through it and it all came out.

Yesterday was Day +10 and Chloe’s 18 month birthday. It was a completely chaotic day for us without much time or energy for celebration. One of Chloe’s nurses who spends as much time as she can with us, brought in cake and balloons for Chloe and gave her a cute Longhorn clothing set. We are so touched sometimes by the people here, they have made such an impact on us and Chloe’s care and we really are grateful for them.

As my Mom said, internet access can be frustrating here, so I apologize for the gap in journal entries. It has been a rough time for Chloe, and it’s likely to continue that way for awhile. But she’s tough and we’ll all keep at it.