It comes on so quickly for Phoebe. It took less than an hour for her energy to fade to pure exhaustion this evening. We could tell from the minute she got home from school something was off. That she wasn't feeling like herself. That something was brewing inside. With a fever no lower than 100.6 with medication and respiratory symptoms we know all too well beginning, we are on her round the clock treatment regiment. Praying this doesn't get much worse for her!
Happy 8th birthday to my rare gem! Phoebe, you have the most unwavering courage and strength, especially for someone so young. Your spirit radiates in everything you do. Your ability to greet each day with wonder and amazement in your eyes is a gift, one I hope you never lose. I look at how you go through all that you do and you inspire me! You are teaching so many people along your journey and giving a voice to rare diseases everywhere! You are a champion, my little fighter! I am honored to be your mommy! I love you puddin!
Phoebe got to celebrate her upcoming 8th birthday with some of her friends from school!
Phoebe is not always able to attend school and when she can go to school she cannot do everything her class does. Last year she felt very left out. It was very hard for her to watch her classmates run off and play without her, especially when she would try to participate as much as she could. It honestly broke her heart (and mine when I witnessed it at an end of the year party) and Phoebe didn't want to go back to school at all.
But this year has been different! She has made some amazing friends who go out of their way to include her. These friends will even choose to sit with Phoebe when she cannot participate in the activities.
This birthday party was extra special because Phoebe got to celebrate with some of these friends from school!
The past couple of days have continued to be rough for Phoebe. Her fever has continued to spike over 103, with motrin only being able to bring it down just a little and only temporarily. We have been able to keep her hydrated just enough to avoid needing more IV fluids, but it is not enough for us to eliminate the possibility of going back to the ER with this illness.
But it was overnight last night into today that this illness officially hit the one system we dread any illness hitting....her lungs. Phoebe has been coughing a lot and she having difficulty catching her breath. Sleeping was very rough for her, as she couldn't breathe well. Yesterday morning her lungs sounded clear, but with these new symptoms we headed back to the doctor where they heard crackles in her right lower lobe. Her right lung....the weaker lung...the lung that experiences atelectasis...
All of Phoebe's doctors had hoped today would have been the turning point for Phoebe getting better. But unfortunately she turned in the opposite direction. After receiving a nebulizer treatment in the doctors office we were able to go home with more medications added to her daily regiment and strict weekend instructions. If her fevers do not begin to break and stay down without medication by Monday or if her breathing/coughing does not improve, she will need to be seen in the office again. And if gets any worse than she is today, even a little, we are to go back to the ER.
As of this moment her frequent nebulizer treatments appear to be helping with her breathing and coughing. She still needs to alternate tylenol and motrin for temperatures going over 103, but we are praying since today is the first day with new medications tomorrow will be the turning point we have been hoping for since this illness began.
Thank you all for your continued prayers!
I am so thankful to have been able to be at the ER with Phoebe last night/early morning. I was at work for the overnight shift when her temperature started to spike. She hadn't been eating or drinking enough throughout the day, so we knew something was brewing. But with a temperature, especially as high as hers can go, Phoebe can go downhill very quickly. So my family was keeping me updated throughout the entire first part of my shift and doing their best to manage it on their own. It was when her temperature spiked to 103.7 that we knew there was no way we could avoid going into the ER. Blessed with the amazing coworkers I have, I was able to leave work and rush to be by her side.
Her nurses and doctors were amazing. Each one of them took her extensive health history seriously, researched what they needed to, approached her care in an all encompassing "covering every base possible" way, and even yielded to her primary doctors for all final decisions.
True to Phoebe form, her labs showed an array of levels that ranged from normal to very concerning. Not surprising to us, as we are used to these multiple variations of levels making it difficult to connect them all to one thing, leaving doctors scratching their heads saying "I don't know". In an effort to not leave us with an "I don't know", these doctors ran more specific detailed tests to see if we can pinpoint any reason for even one of her levels being too high or too low. (We are still waiting on these results and hoping to have them by the end of the week at the earliest.) While there is a very good chance of these tests not giving us any new information, because they never do with Phoebe, we still hold out a little hope that one day they will.
There was one lab level that was most concerning to the ER staff and had them contemplating admitting her to the pediatric floor. But, again like we are used to with Phoebe, the decision to admit is not always an easy one. With her compromised immune system and already being sick, admitting her could become very dangerous for her. To make the decision the doctors yielded to her immunologist, who said no. He did not want to risk admitting her when tests, images and symptom management could be done at home and through her doctors offices.
Symptom management. Something we are all too familiar with when it comes to Phoebe's care. Being undiagnosed and rare leaves very little treatment options available. In the ER symptom management includes IV fluids and fever reducing medication, with the hope the combination can break her high temperature and get us a few steps ahead of this thing. So when the IV finished, the fever came down, and the results of the routine tests, respiratory panel and urinalysis came back, the call to the immunologist was made. And with her immunologist declining admission, we began the process of discharge from the ER.
Our time home has been filled with trying to maintain Phoebe's hydration level while battling her temperature that continues to spike to over 103. It is not the easiest of tasks, and means little to no sleep for either of us. We have spoken to and seen a few of Phoebe's doctors, with more scheduled for tomorrow. (it is not as easy to get same day "hey my daughter was just in the ER" appointments as it should be). While we don't have a definitive answer, we do know some information.
What we know...
-What Phoebe is experiencing, her doctors call "her body shutting down". When she gets sick, her body doesn't do what it is always supposed to do. While she will exhibit some "normal" immune responses, they are not always for the reasons she should be experiencing them. And they are not always doing what they should be doing. Her body begins to attack itself instead of fighting off whatever is going on, which results in her entire systems becoming overwhelmed and her body just starts to cave into whatever illness(es) have taken ahold of her.
-She does have a virus, they just don't know which one. Her respiratory panel came back negative for all the test encompasses, but that just rules out the most commonly tested for ones.
-She is beginning to do her grunting and head bobbing breathing. This is an indication that her lungs are being affected and something we have to watch very closely since her right middle lobe collapses.
-Her lymph nodes are still enlarged (her normal), but they are beginning to grow into one another and there are more of them. We would need more imaging to check the size of the enlarged lymph node on her trachea and to check the rest of her body.
-Her liver and spleen, which they thought she had "grown into", (they were enlarged for many years) are in fact still enlarged.
-Her CRP is very high, showing there is inflammation in her body, but further testing needs to done to identify what, where and why.
-We need to add a 17th specialist to our list of doctors, to give not only her history a new pair of eyes, but to also see if they can make sense of her all of the place lab levels.
-She is still receiving all her regular daily medications, they are now more strictly regimented while we support her through this.
So round the clock temperature checks, alternating tylenol and motrin, and waking her up every thirty minutes to drink fluids, we hope to avoid another trip to the ER. Which, unfortunately, if we cannot keep the temperature "controlled" (keeping it from going to high or staying too high) and we cannot keep her hydrated enough, another trip to the ER will be inevitable.
So while she is curled up next to me in "that" blanket, I'm waiting for the alarm to sound to signal our 2:30 checks and medication administrations. Maybe after that I'll be able to get a couple hours of sleep before the alarm sounds again.
As one of the kids representing Jack's Kids, Phoebe got to throw out a first pitch at the Somerset Patriots game!
Phoebe was scheduled to throw out a first pitch at one of Jack's Kids 26th Annual Jack Gardner Memorial Tournament Games again this year. Unfortunately she had a very rough night last night. She was experiencing a lot of swelling, pain and difficulty catching her breath (heat related flare up) and by the time she was comfortable, stable and asleep it was 5 am in the morning. Our hope of being at the field at 7:30 am for the first pitch was not going to be a reality.
Participating in this event has become of Phoebe's favorite activities and she looks forward to it every year. She even counts down the days until she can throw out a first pitch. But we knew everyone involved in Jack's Kids, including the teams playing, would understand why we were unable to make it to the field.
Thankfully we were able to make it to the lodge just before 1 pm to enjoy the rest of the days activities, which were equally inspiring, humbling and full of joy! To witness the time, dedication and love every one of Jack's Kids committee members puts into all the Jack's Kids families is inspiring. It is a true blessing that Phoebe, our family, is a Jack's Kids family.
Getting brand new fishing poles and mommy getting her fishing license for the year can only mean one thing! Early morning fishing before the heat kicks in and we have to stay in doors!
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.