Our daugther Willow is currently fighting Meningitis. For those unfamiliar, Meningitis is an infection of the Cerebral Spinal Fluid that surrounds the spine and brain. The unnerving part for us as first time parents is that the doctors do not know what is causing the meningitis. She is currently in one of the nations best Children's Hospitals receiving the best possible care that she could receive -- and given the circumstance, we would not want it any other way.
So you might be wondering how we got to this point? How did Willow get Meningitis? How did we progress to where we are at right now?
Willow was originally born with an Apgar of 6 and 9 (the unmbilical cord was wrapped around her neck when she came out of the womb at first -- however, with a little motivation her color returned to her and she was now in mommy and daddy's arms). As normal procedure, the doctors monitored Willow's Glucose levels for the first 24 hours to be sure that she is not having any trouble with maintaining Glucose in her body (turns out she was -- so off to the Special Care Nursery).
Willow was in the Special Care Nursery from Monday June 5th - Sunday June 11th, 2017. While in the a Special Care Nursery Willow was closely monitored addressing the Glucose levels followed by multiple IV's to be sure she was staying hydrated and receiving Glucose...well...she started having some breathing mishaps -- where she would stop breathing for a moment. The doctors classed it as Transient Tachnypea (leftover fluid in her respitory system that would clear up in a couple of days) putting our worries to rest that this soon would pass. She in the mean time earned a ticket of being on some oxygen that would help with her breathing until whatever was left in her respitory system cleared up on its own. As time progressed going into Tuesday June 6th into Wednesday June 7th, her Bilirubin levels spiked up to 21.7 (30-50 range can cause potential brain damage) -- the doctors ordered that she be placed under two phototherapy lights to ensure that her Bilirubin levels would go down. Again, we were told that this soon would pass: the amount of emotions and concern that would ensue had both mommy and daddy praying that she would be okay.
By the end of Wednesday going into Thursday June 8th, her Glucose levels had returned to a relatively normal level (the doctors, mommy and daddy were all very pleased with this -- still under the phototherapy lights). However, her temperature spiked which prompted doctors to check and make sure she was not fighting off any infection (blood cultures were drawn and just for an extra measure, the doctors did a spinal tap on Willow just to be sure she wasn't battling an infection in her spinal fluid).
We received news late Thursday that her white blood cell count was over 1000 and the doctors were now diagnosing her with meningitis (the doctors however did not know what type of meningitis she had: either Viral, Bacterial, or HSV -- so all sorts of different tests ensued). This was heart crushing for both my wife and I as we just want our daughter to be happy and healthy so she can come home with mommy and daddy. They immediately started a course of antibiotics and started monitoring blood cultures as well as sending off CSF (Cerebral Spinal Fluid) to be tested to try and determine what type of meningitis she has -- the waiting began.
As time progressed into the weekend, it was getting harder and harder for the doctors to get a stable IV in Willow. We received the call Sunday that our daugther would be transferred south to Children's Hospital for a PIC Line IV (a more stable and comfortable IV). We arrived and got checked in promptly and started working with the medical team down here regarding where things stood with Willow and her condition. The Infectious Disease Doctors here determined that they wanted to run their own tests (as they can do them here at the Hospital with a relatively short waiting time frame as compared to the hospital north where we were previously at) to make sure that they got everything correct and accurate to determine what's causing her meningitis.
Monday June 12th, 2017 begins.
The doctors were closely monitoring the blood draws taken from Willow Monday to be sure that no bacteria was growing in the cultures. The really confusing part for the doctors is that Willow is acting like a completely "normal" baby by their standards. She isn't showing any signs of discomfort or distress. So all we could do was wait.
Tuesday June 13th, 2017
The doctors wanted to make extra sure that she did not have HSV Meningitis in conjunction with how the white blood cell count was doing (as nothing in the blood cultures was proving to be bacterial) so they ordered a second spinal tap on her. The spinal tap was successfully performed. The HSV Meningitis test came back negative, and her white blood cell count had dropped to 100 which was excellent (indicating that her body might be naturally fighting off the infection -- though she's still on antibiotics)! Mommy and daddy were really excited and things looked like we would get to take her home soon! They just wanted to run a MRI test to make sure that no changes had or have occurred in her brain. The MRI test was ran on same day, now we just had to wait to get results back.
Wednesday June 14th, 2017
Mommy and daddy received a report of the MRI tests from last night. Unfortunately it did show that there was some past bleeding in her brain. The doctors stated that we will be meeting with the neurological team to discuss a game plan and what Willow's future is looking like here (at a minimum they want her on a course of three weeks of anabiotic's and to monitor her here at Children's Hospital -- as to when that three weeks has started, we have yet to talk to the neurological team to find out if that was when she was started on anabiotic's from the hospital up north, or if that three week course starts now). They still do not know whether it is viral or bacterial meningitis; the comforting thing is that they know that it is not HSV meningitis ( HSV is the more severe form that can cause long-term complications).
As for where we sit right now, lots of unknown questions still. This is hard on my wife and I emotionally, financially and physically as during the week I have to be apart from her for work to support us. The best thing that the doctors have told us right now is we can focus on the fact that she's acting like a perfectly normal baby and that they are confident that they have caught this early -- seemingly. As for right now they don't think that her condition will get worse, but that is always a possibility. She could go on to live a perfectly normal life with no developmental complications at all, or she could have some setbacks on the way. The tough part is we really don't know or have any complete answers right now -- only time will tell. In the meantime she has earned a much longer stay here at Children's Hospital.
We have set up this go fund me to help offset the costs regarding food, transportation, medical bills and care for Willow at this point in time. If you are able to voluntarily contribute to this go fund me, we would greatly appreciate any and all of the support we can get! If you are unable to contribute at all, we simply ask that you please share this go fund me to reach as many people as possible.
Both my wife and I extend our gratitude and thanks to all of those who helped us so far -- whether that was by providing meals for us when we were staying at the north hospital, your prayers, encouragement, and other means. You know who you are and we greatly appreciate all that you've done for us! We will continue to keep everyone updated regarding Willow's situation, please check back for continued updates.
- Gary Hardman
- Chris Brueske
- Scott Stilts
- Mie Curtis
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