Mom Needs a Nap

Keira and I have been in the hospital for 20 days now.

Originally, the plan was for Dave and I to switch each week or two. However, because of COVID-19 concerns and him flying to Amsterdam each week with Livvy, they wanted me to stay until Keira was past her mucositis phase, when her immune system would be at its lowest. Fair enough.

The sleep (or lack there of) schedule has been rough. And as mucositis kicked in Friday night (Oct 9th) even more so.

As all the side effects began she needed more medicines to keep her out of pain and more snuggles with Mom. While some nights she was able to sleep well (thanks Morphine), I, however, had to get up with every beep of the machines, which meant one medicine was done and it was time for the next. Time to get up, pause the noise on the machine and hit the nurses button. This happens hourly throughout the night.

Usually by the time they take her daily blood draw at 6am she can go back down until 9am so that gives me a good 3-hour block of time to sleep more and sometimes hurry up and shower while she sleeps.

Needless to say, Mom needs a nap. Or a spa day. Or both.

Once the mucositis started on Friday, so did the hair loss. But only a couple hairs at a time. Now it’s becoming a little more but nothing extremely noticeable when you look at her.

Two days later, on the 11th, she needed a blood transfusion because her hemoglobin levels were low, on the evening of the 12th she needed a platelet transfusion, on the 13th she got a immunoglobin infusion, on the 14th, she needed another blood transfusion and today, the 15th, she needs another platelet transfusion.

This is all normal and par for the course at this stage in the game. They also took an xray for pneumonia (which came back negative) and did an ultrasound of her liver (which looked great).

And I was beyond happy to see her acting more like her normal self for the first time yesterday. Smiling away and even playing! 🤗❤ It made our day and so far she is feeling good today as well.

Can’t wait to see our strong girl push through this phase and be on the road to recovery and a normal life without all the struggles and pain that comes with MLD. Truly a blessing and a miracle!

4 thoughts on “Mom Needs a Nap

  1. 🙏🥰🤗

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  2. Kendra you are as amazing as your Keira!!! I am so proud of you!!! Did you ever think you were this strong? Lets hope and pray the worse is over for Keira and she will smile her way into her wonderful life ahead!! Prayers continue with our love. Uncle Jim and Aunt Judy


  3. Bless both your hearts – it’s so hard as a Momma not being able to make the pain go away as quick as we would like it to – but you both are strong and it seems as if all is going the way it should – still praying and sending you lots and lots of love ❤️😘❤️😘❤️


  4. Kendra all this brings back so many memories for me. It’s amazing as a mom how much we can function even when we are dead tired. You are doing a great job and so is Keira. I do know how hard this all is but in the end, it will be worth it! My heart goes out to you. Keira sounds like she’s fighting like a champ and has a great team mate! Hugs and prayers continue for you, Dave and the girls!


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