High Fever and Loving Kindness

Hana’s temperature has been climbing, even after getting Tylenol. They actually gave Tylenol and Benadryl before giving her the immunosuppressant ATG. In 40 minutes her temperature has gone from 38.6 (101.5) to 39.1 (102.4). This makes me very nervous because it could mean infection. Infection is kind of disastrous because her immune system is suppressed so she won’t reject her new heart. Infection can kill. Or, her temperature could be high because she’s almost 24 hours post-op and inflammation can peak around that time, causing fever. But her CRP and procalcitonin are high and that leads them to believe it’s infection. So, they are doing blood and urine cultures and starting her on broad spectrum antibiotics, vancomycin and zosyn.

We’ve been down this road before and it has always turned out okay. I hope that’s going to be the case. If you want something specific to add to your prayers or positive thoughts for Hana, please add that this is just post-op inflammation, not infection, and that her temperature goes down to normal very soon. Thank you for all the prayers and positive thoughts. We are so grateful!

Following is a beautiful Loving-Kindness meditation for Hana and her donor family, sent by my aunt:

Loving-Kindness meditation for Hana’s new life:

May Hana’s body welcome and nurture her new heart.

May Hana’s spirit soar, explore, create, and become.

May Hana be safe and free from suffering.

May Hana’s heart be strong and whole.

May she live a life filled with gratitude and zest.

May Kathleen and Paul be healed in body and spirit.

May Kathleen, Paul, and Hana grow in joy and peace as a family.


Loving-Kindness meditation for the donor family:

May the donor family be wrapped in a blanket of love and tenderness.

May they be held and rocked in their grief.

May their memories and stories be heard as sacred.

May their compassion and generosity be a lesson to us all.

May their child’s life force bless the world with each sunrise.

In time, may they find solace and meaning in their most loving gift.

In time, may their hearts be healed and at peace.


Fever

My friend Erin has been here the past week. It has really been amazing to have her here. In some ways it feels busier when someone is here staying and helping and that’s because I am trying to do more than I normally would do. But I am very grateful for the support so that I can catch up on other things like paying bills. But more than anything I am grateful for the love.

I always thought Erin would be an elementary school teacher because she is so good with kids. Erin is actually a special ed teacher at a very special school for kids with multiple disabilities. Many of the kids have a private nurse that accompanies them to school, like my mom. It takes a lot of patience and compassion. I learned from watching Erin with Hana, especially when it comes to the challenges of feeding.

Feeding has not been going great. Hana is still liking the Mr. Juice Bear, or “Milk Bear”, as we call it. She is taking about 120 mL a day. Solid foods is not going very well at all, although I am always encouraged when we see the feeding specialist. I am getting negative about the whole thing. I forget the small successes. I think that because we saw improvement one day that will be the baseline to improve upon the next. It doesn’t work that way. Some days are worse. It is two steps forward, one step back and sometimes, two steps back for a while. I am getting desperate.

Adding to my desperation is the vomiting. We went five days without a vomit, that’s the new record. Then, last Sunday she vomited in the evening and her NG tube came shooting out. On Friday night she also pulled out her NG tube in the middle of the night. That’s the worst because you don’t want to put it back in in the middle of the night and her continuous feed leaks all over the bed. The next morning we tried to get her to eat and drink and maybe take some juice or medicines from syringes but it wasn’t happening so we put the tube back in around 10:30 in the morning. I felt defeated!

I’ve been doing some research and I am looking at a new approach, more on that in another post. Before I can begin on that Hana needs to get better. Last night was a terrible fussy night. The feeding pump alarm kept going off every fifteen minutes during her continuous feed. Hana kept waking and rolling out of bed. I ended up just sleeping in her room, next to her bed and finally figuring out why the feeding bag tube kept kinking and setting off the alarm. It was a very bad night for sleep. In the morning, Hana felt warm to me and I discovered she had a fever.

I knew the day would come when she would get sick, have a fever and we would have to see how her heart would handle it. I was on the phone with the Kaiser pediatrician on call and the Stanford pediatric cardiologist on call. Hana was clingy and fussy and tired. I was worried. The Kaiser doctors were worried but deferred to Stanford and made an appointment with our regular pediatrician for Monday. Stanford mentioned having us come in if her fever got worse. It did get worse. I called back. They said to give Tylenol. I gave it and she immediately vomited. So I called again and they had me re-dose it. Then we waited. I imagined having to go back down there and spend the night. I really didn’t want that. Paul held Hana while I made silly noises and faces and she started to laugh and giggle. She napped again. She watched baby signing times. It was 5 pm when I realized that I never changed out of my pajamas. The cardiologist called to check in on Hana and by then her fever had gone down and she was acting fairly normal! Everyone was relieved.

I am writing this late, later than I wanted because Hana woke up and vomited in the middle of me writing this. I checked her temperature again and it is back to a normal temperature, but I’m glad we have an appointment with the pediatrician tomorrow!

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