Since it’s been a while since our last update, we have a lot to cover.
On Sunday, May 20, Grair came down with a fever. We had been home for about 5 days, and had strict instructions to call our pediatrician if such an event occurred. After consulting with the cardiologists and infectious disease doctors in Omaha, Dr. David sent us back to Children’s to be admitted.
So, back to Omaha we went. For the next week, Grair continued to run fevers for a short time in the early evenings. Unfortunately, we haven’t been able to pinpoint to exact cause of the fevers. We have a couple of possibilities:
- The endocarditis, in spite of the antibiotics, is causing Grair to fight harder.
- The vancomycin, which is a very powerful antibiotic, is causing a drug fever.
- He has another bacteria bug, or has caught a virus.
Thorough blood tests have not been able to identify another bacteria, and fevers without any other symptoms rule out viruses. This leaves the other two as possibilities. At the end of all of this, we may never know which is the cause.
What we do know is the antibiotics require precision in terms of dose amount and timing. As I mentioned, these antibiotics are powerful drugs. Too much, and we could have issues with kidneys and hearing. Too little and we’re not treating the bug. So, blood draws have to be done often to ensure the correct therapeutic range is at work in Grair. Some days we may need a higher quantity than other days, and the doctors are working hard at trying to get some sort of consistency and regularity.
In addition to monitoring the dose levels, the labs also monitor kidney functions. It’s been determined that Grair’s kidneys aren’t keeping up, so he’s on IV fluids to keep him flushing out more often. We don’t have any indication of long-term kidney issues, and all the doctors believe he’ll bounce back once the antiobiotics have run the course.
All the blood draws have led to another issue: anomia. So, on Saturday night, Grair got a blood infusion to keep his numbers back up. All day on Saturday, Grair wasn’t acting like his normal self. Melissa and I were convinced he was depressed and sick of being in the hospital. While this is still likely, it wasn’t the cause. When he woke on Sunday after the infusion, he was back to normal Grair.
On June 20, Grair will undergo open-heart surgery to remove the stent, and replace his valve with a new one. This was a procedure he would have likely gone through sometime in the next 12 months, so now we do it sooner.
Given the fevers, the need for the IV fluids and potentially more blood, we’ve been told to expect to stay at the hospital through the surgery. So, for the month of June, Grair will have an Omaha address and the rest of us will be bouncing back and forth between Lincoln and Omaha.
Hoping your hospital stay is an easy one and the operation is a great success. Thinking of your family and sending positive and healthy vibes. Tell your little fighter that he is my hero.
Thank you Melyssa!
Our family will pray for Grair and your family.
Thanks Mike!
We will be praying for Grair and your family. Hoping you’re able to find rest and comfort during this difficult journey. Praying for the knowledgable and healing hands of the doctors and nurses taking care of Grair. Your little man is amazing, and so are his parents!
Melissa and Seth,
I’m Praying for Grair and the two of you and also his doctor’s and nurse’s. God is awesome and he will take great care of all of you! Thanks for up dating all of us. ~Tina~
I have been praying for Grair and your family on a daily basis, and I will continue to do so. May God strengthen, comfort, and protect each of you, and may he guide the doctors and nurses taking care of Grair.
Hey Melissa,
This is Desseraye, (a.k.a. Desiraye Oglesby) from Karen’s studio. I have been reading all of your posts about Grair. You are a strong mama and family. I just wanted to let you know that I live in Omaha if you need anything…we are about 15 minutes from Childrens! Stay strong, we will be thinking of you!
You all continue to be in my thoughts and prayers.
He has a wonderful family and is such a strong little man.
Love,
Glenda Beckman
Bless his little heart! I pray for Grair daily and know that he is receiving excellent care where he is.
Stay strong and positive! Please do not hesitate if you need help in any way!
Jill Benda
Sorry you are going through this, but so nice to see your support for your sweet family. Please let us know if we can help by watching the kids. Jack would love to have a playdate with Cael:)
Our constant prayers are with Grair and all of your family. What an amazing child to withstand all of this treatment and still keep a smile on his face! May God keep his arms tightly wrapped around your family so you may feel his close presence at all times.
Abby, Pippa and Todd Miller
All of you are in my prayers. Little Grair is such a fighter and God will continue to be with him.