Grace is home, praise be to God! Thank you for your support and prayers. Still looking for some immune markers to increase, along with her platelet count, but she has responded great to the treatment and was cleared to return home. Results came back negative for the meningococcus meningitis which is awesome because that would've been the more serious of the two or three possible diagnoses, possibly with some longer-term effects on some of her organs.
Will finish out her oral meds through Sunday, and we will try to keep her away from large crowds and sick people until some of those markers do you return to normal levels. Following up with the pediatrician next week and with the infectious disease doctor in about a month unless we need to follow up sooner for some reason. Great to be home again!
Wednesday, November 4, 2015
Tuesday, November 3, 2015
Tuesday afternoon update
Grace is doing great again today! Had a pretty busy morning doing some stuff around the hospital with me and then also with Michelle's mom who came by for a little bit. She was going full steam ahead and is getting in a nice nap right now. :-)
If blood work is the same or improved in the morning, she will probably come home tomorrow.
They are especially going to look at white blood cells, platelets, etc., that have been on the low side.
A big thank you to family, friends and church for the prayers, meals, childcare help, and overall support! Thank you for walking this journey with us over the past week since Levi was born and then the hospitalization.
If blood work is the same or improved in the morning, she will probably come home tomorrow.
They are especially going to look at white blood cells, platelets, etc., that have been on the low side.
A big thank you to family, friends and church for the prayers, meals, childcare help, and overall support! Thank you for walking this journey with us over the past week since Levi was born and then the hospitalization.
Monday, November 2, 2015
Monday afternoon update - probably going home Wednesday
Inconclusive bloodwork returned today, but that was neither a negative thing nor an unexpected thing.
The doctors have indicated that we may never actually know exactly what the infection was caused by. The important thing is that Grace is recovering.
Most likely returning home Wednesday afternoon.
Grace is doing awesome today praise the Lord!
Lots of energy and good appetite for pasta, salad, and steamed baby carrots for lunch. :-)
She's getting in a nap right now.
White blood cell count and other key markers have improved today.
Platelet count is still lower than they would like and has not changed over the last few labs.
They would really like to see the platelet count trending upward before releasing Grace, but that will not necessarily keep them from releasing her.
The doctors have indicated that we may never actually know exactly what the infection was caused by. The important thing is that Grace is recovering.
Most likely returning home Wednesday afternoon.
Grace is doing awesome today praise the Lord!
Lots of energy and good appetite for pasta, salad, and steamed baby carrots for lunch. :-)
She's getting in a nap right now.
White blood cell count and other key markers have improved today.
Platelet count is still lower than they would like and has not changed over the last few labs.
They would really like to see the platelet count trending upward before releasing Grace, but that will not necessarily keep them from releasing her.
Sunday, November 1, 2015
Sunday night update - things are looking up!
Thank you for your faithful prayers! We are experiencing the fruit of them.
The end of 3 full days at Scottish Rite, probably released Tuesday evening.
Blessings:
Fever totally gone.
Much improved appetite and energy level today.
Much more like herself today. For once, Michelle and I were pleased with Grace's orneriness. :-)
Still no definitive blood work results. The blood culture is being continuously scanned by a machine that aims to identify specific bacteria.
The test for Rocky Mountain Spotted Fever was sent out to a lab in Utah on Friday (maybe it helps to have a lab closer to the Rocky Mountains, heh heh). It takes 4-5 days to get the results, so that puts it at Monday or Tuesday. Grace could go home right away if this is the diagnosis, because she could finish up her 5-day round of antibiotics orally at home. In the meantime, they continue to treat her for that and also the Meningococcal meningitis (the more serious of the 2 possible infections). The later infection HAS to be treated via IV, which is one of the reasons they are keeping Grace admitted.
Been meeting daily with the attending pediatrician here, along with infectious disease doctor and met a couple of time with 2 different hand surgeons who checked out her infected right hand which has had a mark that could be a bite, along with some swelling and the main concentration of the tiny little red dots that are all over her body (hence the possibility of Rocky Mountain Spotted Fever).
Adeline turned 4 today and we had a little birthday party at the hospital, thematically centered around the Frozen movie. We recently moved and our awesome new neighbors Brad and Brooke hired a young lady who plays Elsa for little girl birthday parties. She came to our house this afternoon to surprise Adeline and it was a huge hit!
Adeline is a trooper through all the care and attention Grace has needed over the years related to her developmental delays and various ongoing therapies, and now this happening over her 4th birthday. She is a special little girl that I am extremely proud of.
We have had great peace in the midst of this scary storm. A peace that surpasses all understanding, which is a testament to the power of God, and the prayers of God's people.
Love from Michelle and I and Grace, to all of you.
The end of 3 full days at Scottish Rite, probably released Tuesday evening.
Blessings:
Fever totally gone.
Much improved appetite and energy level today.
Much more like herself today. For once, Michelle and I were pleased with Grace's orneriness. :-)
Still no definitive blood work results. The blood culture is being continuously scanned by a machine that aims to identify specific bacteria.
The test for Rocky Mountain Spotted Fever was sent out to a lab in Utah on Friday (maybe it helps to have a lab closer to the Rocky Mountains, heh heh). It takes 4-5 days to get the results, so that puts it at Monday or Tuesday. Grace could go home right away if this is the diagnosis, because she could finish up her 5-day round of antibiotics orally at home. In the meantime, they continue to treat her for that and also the Meningococcal meningitis (the more serious of the 2 possible infections). The later infection HAS to be treated via IV, which is one of the reasons they are keeping Grace admitted.
Been meeting daily with the attending pediatrician here, along with infectious disease doctor and met a couple of time with 2 different hand surgeons who checked out her infected right hand which has had a mark that could be a bite, along with some swelling and the main concentration of the tiny little red dots that are all over her body (hence the possibility of Rocky Mountain Spotted Fever).
Adeline turned 4 today and we had a little birthday party at the hospital, thematically centered around the Frozen movie. We recently moved and our awesome new neighbors Brad and Brooke hired a young lady who plays Elsa for little girl birthday parties. She came to our house this afternoon to surprise Adeline and it was a huge hit!
Adeline is a trooper through all the care and attention Grace has needed over the years related to her developmental delays and various ongoing therapies, and now this happening over her 4th birthday. She is a special little girl that I am extremely proud of.
We have had great peace in the midst of this scary storm. A peace that surpasses all understanding, which is a testament to the power of God, and the prayers of God's people.
Love from Michelle and I and Grace, to all of you.
Saturday, October 31, 2015
Saturday night update
Staying overnight again tonight. Lots of poking and prodding today. Grace is being a champ.
She wants to go home really bad and is missing the family. Visits today from Mommy, uncle Zach, Grandmommy and Poppa.
Staff here is being very communicative and great to work.
Grace was able to get out of the room today and go on a wagon ride around the hospital and play some games in the playroom and in her bed.
Her appetite is still pretty much nonexistent.
She has had flu-like symptoms for several days but the Great news is that she had no fever all day long, which is a huge praise.
She has tiny red dots all over her body and redness around the eyes, which would be in keeping with a diagnosis of Rocky Mountain spotted fever, although that is still not confirmed as the official diagnosis. Another possible diagnosis is meningococcus, which would be the more serious of the two.
The palm of her right hand is where a possible insect bite occurred and around the bite area is very blotchy. The good news though is that the blotchy area is much lighter than it was yesterday. It was dark red yesterday and today was more pinkish.
Specific prayer requests:
That a diagnosis would come to light as soon as possible, and being treated quickly and effectively. Out of the two possible diagnoses, we would want to Rocky Mountain spotted fever, as it Has the better prognosis, and can be treated just as effectively at home as at the hospital. The other diagnosis would need to be treated at the hospital which could mean several more days here.
She wants to go home really bad and is missing the family. Visits today from Mommy, uncle Zach, Grandmommy and Poppa.
Staff here is being very communicative and great to work.
Grace was able to get out of the room today and go on a wagon ride around the hospital and play some games in the playroom and in her bed.
Her appetite is still pretty much nonexistent.
She has had flu-like symptoms for several days but the Great news is that she had no fever all day long, which is a huge praise.
She has tiny red dots all over her body and redness around the eyes, which would be in keeping with a diagnosis of Rocky Mountain spotted fever, although that is still not confirmed as the official diagnosis. Another possible diagnosis is meningococcus, which would be the more serious of the two.
The palm of her right hand is where a possible insect bite occurred and around the bite area is very blotchy. The good news though is that the blotchy area is much lighter than it was yesterday. It was dark red yesterday and today was more pinkish.
Specific prayer requests:
That a diagnosis would come to light as soon as possible, and being treated quickly and effectively. Out of the two possible diagnoses, we would want to Rocky Mountain spotted fever, as it Has the better prognosis, and can be treated just as effectively at home as at the hospital. The other diagnosis would need to be treated at the hospital which could mean several more days here.
Another Journey of Grace
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Posted by Derek:
Posted by Derek:
Dear friends,
Grace and I stayed at the hospital overnight last night and will do so once again tonight. We don't know exactly when she will be released, but are hoping to be sent home tomorrow, which is also Adeline's fourth birthday. We are missing being home, being with our family, and seeing our brand-new baby brother Levi who was born on the couch at home Tuesday morning.
5 years ago, my beloved firstborn Grace Elizabeth was admitted to Scottish Rite Hospital in Atlanta, facing a life threatening illness at only 5 months of age. Today, at 5 1/2 years of age and now as the oldest of four, she finds herself in that same place again.
Having experienced persistent fever and other symptoms for several days, Grace was admitted to Scottish Rite yesterday and has been undergoing testing and treatment for what appears to be a bacterial infection in her blood, possibly tick borne. Still awaiting exact diagnosis, the Doctors are treating her for the 2 most likely suspects, both of which are are fatal when untreated.
Her prognosis is good and she is receiving world class care and medicine. But much more importantly, we have a mighty God that says that when we walk through the valley of the shadow of death we should not be afraid, because he is right there with us. (Psalm 23.) Additionally, Psalm 91 says "You shall not be afraid of the terror by night, nor of the arrow that flies by day, nor of the pestilence that walks in darkness, nor of the plague that destroys at midday. A thousand may fall at your side, and 10,000 at your right hand, but it will not come near you." We are trusting our Heavenly Father, in the name of His Son Jesus, by the power of His Holy Spirit, for Graces's healing.
Grace and I stayed at the hospital overnight last night and will do so once again tonight. We don't know exactly when she will be released, but are hoping to be sent home tomorrow, which is also Adeline's fourth birthday. We are missing being home, being with our family, and seeing our brand-new baby brother Levi who was born on the couch at home Tuesday morning.
Grace has been in the valley of the shadow of death before. Michelle and I have been there before with her. Most importantly, the Lord has been, and is once again, by her side.
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