I was dreading the sedated hearing test. I wasn't worried about the results, we're ready for any scenario. The test was scheduled for 1pm and due to the sedation, she wasn't allowed to eat past 7am. That's a recipe for disaster. When was the last time you skipped breakfast AND lunch? How did you feel? Okay, multiply that by the difference between your age and 2. That's about how traumatic I expected it to be. And I wasn't disappointed, in fact it was a bit worse than I expected.
We arrived at our scheduled time of 11:45. After checking in, we needed to find something to occupy the hour wait until sedation. And since her immune system is non-existent right now, we couldn't be around other people. So we found a quiet hallway and paced up and down trying to calm a very hungry, sleepy little . At 12:45 we returned to the audiology clinic and were escorted to a room. Due to a scheduling conflict, the sedation team did not arrive until 2:45. That 3 hour wait was more than Lillian could handle, she was hoarse from crying by the end.
The test showed hearing loss in high frequencies and in speech areas which means she will likely need hearing adds. A small price to pay for a long, healthy life!
We returned to the oncology clinic after the hearing test (1 1/2 hours late). She needed a platelet transfusion. While we were there, we pointed out some redness in the shunt. The oncology team was worried about the redness particularly given her compromised immune system and admitted us. (Quick pat-on-the-back moment; I packed for a 5 day stay, just in case.) Neurosurgery does not seem concerned by the redness. She's on antibiotics as a precautionary measure while we wait to see if the cultures show any sign of infection. Regardless, we'll be in the hospital until her counts bounce back. If she follows the same pattern as last time, that would be Thursday.
All in all, Friday was a VERY LONG day. I'd put it up there with some of the worst days we've had so far. But she was feeling so poor that the hospital is the right place to be. Please pray for a comfortable stay (confined to our room) and that there is no infection.
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6 comments:
Hi Lori, Jeff, and Lillian,
Just want you to know that we are thinking about you. What an ordeal you three are going through!!! And what impressive people you are!! I hope today is going better than yesterday. Your little girl is definitely a fighter.
Doris
Hi All,
We are really hoping today is going better...more restful and peaceful for you all. You guys are a amazing people...we really admire your strength, positive outlook and sense of humor. Hang in there...
Traci
We are hoping for the best - and may your confinement in the room be brief...I'm impressed with your pre-cog abilities - way to have packed for a 5 day stay!
Take Care -
Garren & Chris
Lori,
What a day for all of you! I must say I'm so pleased you did the packing before leaving for the hospital as every situation is better with clean underwear. Your Lilly is blessed with such strength and ability to adapt it is nothing less then amazing in a child her age. May Lilly stay infection free and get her counts up and may you and Jeff continue to be the wonderful people in her life who are always there for her.
Blessings to all of you, Liz G.
Wow! There are some days that I read this and wonder "how do you guys do it?" Well this is one of those days! All 3 of you are so strong to endure this. It truly inspires me. Our thoughts and prayers are with you always!
Sarah, Glen, & Tucker
Hey guys,
I hope that each day has been better since Friday. We're praying that she zooms through this last leg with flying colors. Your little girl is such a strong fighter. I know it's because of the love she has from her mom and dad. You really do inspire me to try to be a better mom, Lori. We're still praying for you every day.
Love,
Jenn
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