- E
Hello everyone,
I am Abby Maag, and I am Aliviah's sister. We are from Belding, MI. All of the following funds that are raised will be going towards Aliviah's medical bills and her needs. Due to bank complications, it will be funded to my account, and then all of it will be wire transferred to my parent's account. Below is a small summary of Aliviah's story.
SMALL SUMMARY:
I am Abby Maag, and I am Aliviah's sister. We are from Belding, MI. All of the following funds that are raised will be going towards Aliviah's medical bills and her needs. Due to bank complications, it will be funded to my account, and then all of it will be wire transferred to my parent's account. Below is a small summary of Aliviah's story.
SMALL SUMMARY:
As most of you already know, Aliviah was admitted to the Helen DeVos Hospital on April 11th, 2022 for a cerebral aneurysm that was caused by septic emboli breaking off from her heart (endocarditis) and went to her brain. We are collecting money for all of her hospital bills. Aliviah has had two brain surgeries. One to secure the aneurysm and remove a significant portion of her skull, and another to relieve some intracranial pressure. Aliviah also had open heart surgery to remove infection/vegetation on her mitral valve. Now that Aliviah is more stable they did surgery to put in a trach and a feeding tube. This enables her to move towards rehabilitation.
The updates below from my mom is more detailed. You can follow my mom's Facebook for more current updates. https://www.facebook.com/gail.maag
ALIVIAH the onset: BRAIN ANEURSYM : 1st BRAIN SURGERY
"For the last week or so Aliviah had headaches off and on. These were relieved by taking Tylenol. The headaches were never so severe as to be incapacitating and she never needed Tylenol more than once or twice a day. She still functioned well….attending school, driving, etc.
On Monday she attended school as usual. She has a weight lifting class. On Sunday nights I stay with my father so Steve called me and said the school had just called him. It seems Aliviah had collapsed in weight lifting class. The school had already called EMS and requested that Steve come to the school. Steve headed out immediately after calling me and I headed out from my dad’s house in Greenville. Upon arrival at the school Steve found that EMS had already loaded her on the ambulance to head to the hospital. Although she had regained consciousness, her responses were delayed and she was exhibiting some right side aphasia. Steve and I passed each other on the road and he waited for me to park in the nearest lot so we could ride together to Greenville hospital.
Upon arrival at Greenville hospital we were told that they thought she had either had a stroke, or it was bleeding in her brain. They ordered a CT scan. Upon results of the CT showing significant brain bleeding they decided to transfer her to Helen DeVos Children’s Hospital in Grand Rapids where she would receive more specialized care. She tried to speak to me but was unable to and the right side of her face (including the right side of her mouth) did not move. They transferred her with lights and sirens she was so critical.
Upon arrival at HDCH they immediately did another CT. Those results were pretty much like the ones from Greenville. She became agitated in ER when she could not express what she wanted to say. When they transferred her to a room in the pediatric ICU Steve and I used this opportunity to go down to the main lobby to update Anna, who could not come to Aliviah’s floor and had been completely in the dark. We were only with her a few minutes and returned to Aliviah on the 8th floor.
When we arrived at Aliviah’s room we were met by a crowd of medical personnel. It seems her condition had drastically deteriorated and they were taking her back for an emergency CT. That CT showed the bleed had more than doubled and they took her directly to surgery.
As of now they are trying to find a reason that an otherwise healthy 15 year-old would have an aneurysm. A geneticist is running tests looking for a connective tissue protein but the results won’t be back for 3-4 weeks. It would not help her treatment, but it would certainly help to know WHY and the odds of it happening again.
Aliviah’s agitation in ER was the last time she has had any voluntary movement. She does not blink, she does not swallow, she does not speak, she does not breathe on her own. There is a gentleman with her now fitting her for boots so she doesn’t get foot drop while unconscious.
She is never alone. She has a very large team working on her, for her, and with her first (and foremost) to keep her alive.
I have taken no pictures as I know that is something she would not want. Suffice it to say that she has so much paraphernalia attached to her and around her that her room looks like the set of a sci-fi movie where they are creating a cyborg.
We are beyond scared and still shellshocked. We have our good moments and our bad. Generally it is the good things that make us a blubbering mess….for Steve today it was hearing that people from work (whom he thought didn’t care) want to send cards and are praying. For Abby it was learning that Tiffany Summers was making pins of Aliviah and had stated that she was hoping that when Aliviah awakened she would be flooded with pictures of herself and know how many people cared. The biggest part that made Abby cry was the use of the word “when”—-she didn’t say “if”. Mine has come from several fronts…from my sister taking my days to stay with my dad (hers are opposite mine so now she has ALL the days) to Laura Vellanti offering Abby (on the sly) gas money, to my mother-in-law caring for our dogs, to the food my brother-in-law left in our refrigerator, to Heather Jackson reaching out to tell me of an kindness Aliviah had done her child and that I never knew about. Each. And. Every. Single. Thing.
Saying I am humbled doesn’t begin to cover these overwhelming feelings of gratitude and awe.
From the bottom of my heart I thank you.
Love, Gail"
ALIVIAH the onset: BRAIN ANEURSYM : 1st BRAIN SURGERY
"For the last week or so Aliviah had headaches off and on. These were relieved by taking Tylenol. The headaches were never so severe as to be incapacitating and she never needed Tylenol more than once or twice a day. She still functioned well….attending school, driving, etc.
On Monday she attended school as usual. She has a weight lifting class. On Sunday nights I stay with my father so Steve called me and said the school had just called him. It seems Aliviah had collapsed in weight lifting class. The school had already called EMS and requested that Steve come to the school. Steve headed out immediately after calling me and I headed out from my dad’s house in Greenville. Upon arrival at the school Steve found that EMS had already loaded her on the ambulance to head to the hospital. Although she had regained consciousness, her responses were delayed and she was exhibiting some right side aphasia. Steve and I passed each other on the road and he waited for me to park in the nearest lot so we could ride together to Greenville hospital.
Upon arrival at Greenville hospital we were told that they thought she had either had a stroke, or it was bleeding in her brain. They ordered a CT scan. Upon results of the CT showing significant brain bleeding they decided to transfer her to Helen DeVos Children’s Hospital in Grand Rapids where she would receive more specialized care. She tried to speak to me but was unable to and the right side of her face (including the right side of her mouth) did not move. They transferred her with lights and sirens she was so critical.
Upon arrival at HDCH they immediately did another CT. Those results were pretty much like the ones from Greenville. She became agitated in ER when she could not express what she wanted to say. When they transferred her to a room in the pediatric ICU Steve and I used this opportunity to go down to the main lobby to update Anna, who could not come to Aliviah’s floor and had been completely in the dark. We were only with her a few minutes and returned to Aliviah on the 8th floor.
When we arrived at Aliviah’s room we were met by a crowd of medical personnel. It seems her condition had drastically deteriorated and they were taking her back for an emergency CT. That CT showed the bleed had more than doubled and they took her directly to surgery.
As of now they are trying to find a reason that an otherwise healthy 15 year-old would have an aneurysm. A geneticist is running tests looking for a connective tissue protein but the results won’t be back for 3-4 weeks. It would not help her treatment, but it would certainly help to know WHY and the odds of it happening again.
Aliviah’s agitation in ER was the last time she has had any voluntary movement. She does not blink, she does not swallow, she does not speak, she does not breathe on her own. There is a gentleman with her now fitting her for boots so she doesn’t get foot drop while unconscious.
She is never alone. She has a very large team working on her, for her, and with her first (and foremost) to keep her alive.
I have taken no pictures as I know that is something she would not want. Suffice it to say that she has so much paraphernalia attached to her and around her that her room looks like the set of a sci-fi movie where they are creating a cyborg.
We are beyond scared and still shellshocked. We have our good moments and our bad. Generally it is the good things that make us a blubbering mess….for Steve today it was hearing that people from work (whom he thought didn’t care) want to send cards and are praying. For Abby it was learning that Tiffany Summers was making pins of Aliviah and had stated that she was hoping that when Aliviah awakened she would be flooded with pictures of herself and know how many people cared. The biggest part that made Abby cry was the use of the word “when”—-she didn’t say “if”. Mine has come from several fronts…from my sister taking my days to stay with my dad (hers are opposite mine so now she has ALL the days) to Laura Vellanti offering Abby (on the sly) gas money, to my mother-in-law caring for our dogs, to the food my brother-in-law left in our refrigerator, to Heather Jackson reaching out to tell me of an kindness Aliviah had done her child and that I never knew about. Each. And. Every. Single. Thing.
Saying I am humbled doesn’t begin to cover these overwhelming feelings of gratitude and awe.
From the bottom of my heart I thank you.
Love, Gail"
4/11/22
"ALIVIAH update. She is out of surgery after five hours. It took them a while to find the aneurysm as it was not in the usual spots. They have put in a couple of metal clips. They are sending her for an angiogram. They removed a significant part of her skull to accommodate the brain swelling but have covered the area with her skin. They said she could be like this a few months. We have no idea about prognosis at this point and would appreciate continued prayers."
4/12/22
"ALIVIAH update: SECOND BRAIN SURGERY
she was not doing well and had to be taken back to surgery to release some pressure. They had put two monitors in her head to monitor, and the pressure was just too high. She came through surgery and her intracranial pressure is acceptable at this time. They have also put in a shunt to help with drainage. The plan is to keep her sedated to give her brain a chance to heal. She is currently having another CT scan. We know nothing. The priority right now is simply survival. I will try to periodically update but may not answer personal texts.
she was not doing well and had to be taken back to surgery to release some pressure. They had put two monitors in her head to monitor, and the pressure was just too high. She came through surgery and her intracranial pressure is acceptable at this time. They have also put in a shunt to help with drainage. The plan is to keep her sedated to give her brain a chance to heal. She is currently having another CT scan. We know nothing. The priority right now is simply survival. I will try to periodically update but may not answer personal texts.
Steve and I are her only allowed visitors at present although her condition was so critical during the night that they allowed her siblings to see her briefly.
We will be grateful for continued prayers."
April 12, 2022 at 4:32pm
"ALIVIAH UPDATE: Aliviah’s intracranial pressure has been steadily rising and they are doing all they medically can to combat this. As you know from yesterday, they removed a significant part of her skull to allow for swelling of her brain. They are keeping her heavily sedated so that her brain does not have to work hard and create more swelling. There is still, of course, the fear of her having a new bleed. She is still critical and her doctor was very upfront with us when he said, “I fear for her life”. I so appreciate his honesty because it is the unknown that haunts us. They have put in an NG tube (nasogastric) with which they will eventually feed her
Anyway, we ARE in the unknown. The doctor said that they are trying to keep things quiet with low stimuli and keep the ICP stable over the next 48-72 hours. The would hope that the swelling will recede some but they are relatively certain in will increase. We are frightened but hopeful. For now we are concentrating on keeping her alive. If we are successful, then we will worry about brain damage and deficits…we will handle these as they come
Things just seem so dark right now. Pippy has always been the color yellow to me. She brings sunshine to our lives, makes us feel warm and makes me smile. It is like the sun has hidden itself behind a cloud and we are anxiously waiting for the sky to clear.
On another note, I am so grateful and completely and totally humbled by the outpouring of prayers, love, and support for our daughter and our family. I may not answer text (I am honestly not trying to be an ingrate or be rude) I am just overwhelmed. Thank you, each of you for every single thing you’ve done. I will update again as things happen…if you hear nothing, it’s probably a positive thing!
Much love,
Gail"
ALIVIAH update April 19, 2022 : OPEN HEART SURGERY DISCUSSION
Aliviah’s day started a week but earlier today. She had an MRI of her brain at 4:00am. They have also done the T.E.E. of her heart (sent a scope down her esophagus to better view her heart). She was sedated for these procedures so we are back to very sparse movements. I attended rounds with her staff and then met with one of her neurologists. The neurologist went over the results of her MRI and, since there are so many unknowns, I begged her to tell me worst case scenario, then I could celebrate every single accomplishment.
Almost the whole left side of her brain experienced damage, and some area on the right. What this entails right now calls for way too much speculation but as she awakens more they will be able to assess her better.
Right when you think one more straw will break you, that straw gets added just to test the limit. Upon speaking this morning with one of Aliviah’s cardiologist she was able to give us a little more detail about her heart. Aliviah has s mitral valve heart murmur. She had open heart surgery at 4 months old and when we brought her home from China we immediately made an appointment with a pediatric cardiologist. He ran tests and released her from his care saying that they had done a great job in China. Although there is no proof, I believe this heart murmur with regurgitation is relatively new. The first time I can recall hearing about the murmur was at the ill-fated doctor appointment in March. Let me just say that I do NOT blame her PA. I felt she had done a good lengthy assessment and ordered an X-ray ( which many would not do). None of us are perfect and she went for the obvious and 99% of the time she would have been correct. I respect her and would see her myself, in fact I DO whenever doctor is unavailable.
So here’s the scoop as I understand it…
Aliviah has vegetation on her mitral valve and there is always the fear/possibility of it breaking free, becoming an emboli, and creating more damage if it reaches the brain. There is also the regurgitation where her blood is back flowing where it’s not supposed to. And lastly, she has (what is believed to be) an abscess along the area where the valve connects to heart muscle.
If circumstances were optimal, cardio would have taken her to surgery immediately. But, as we all know, nothing is EVER easy. To perform the surgery, they would have to put her on a bypass machine….meaning the machine would be circulating her blood while they fixed her heart. To do this, they would have to give her medication to thin the blood. Along with the risk of the surgery itself on her brain, thinning the blood and make it bleed easier is almost unthinkable.
So, sometime today the cardiologists, neurologists, neurosurgeons, pediatric critical care doc, her care team, etc. will meet to discuss risks and benefits and they will bring their recommendations to Steve and me. This should happen before the end of the night.
That’s it for now."
ALIVIAH update April 20, 2022: OPEN HEART SURGERY
She started out the day with a cranial ultrasound as usual. Many doctors came to see her; each doing the same test—one after the other.
Met with the cardio-thoracic surgeon this morning. He explained all the complications of Pippy’s surgery. She is extremely high risk and we are, of course, frightened. They will try to repair her mitral valve but might not be able to. If this happens, they generally will replace it with an artificial valve. Because an artificial valve requires the patient to be on anticoagulant therapy for a long period of time, this is not an option for Pip. This means she would have perhaps cow tissue. If that happens, these do not hold up as well and she would eventually require another surgery.
Her situation is unique. The surgeon said that usually HE does his surgery FIRST then the neurosurgeon tackles the aneurysm. Because of Pip’s massive bleed this was not an option. Her neurosurgeon will be present during the surgery. They minced no words. They could not fathom a guess about survival.
The one ray of light is that today they changed visitation policy and Pip can now have 4 visitors. We are limited to two at a time/ 4 per day, but what a relief…her siblings will be able to visit!!
The cardio-thoracic surgeon is meeting with all the other cardiac surgeons to get THEIR opinions because her situation is so unique. He knows that some would not bother given the risks and the unknowns related to brain function after her bleed. He will meet with us again later tonight.
Tomorrow morning we sign consents. Tomorrow noon or after she will have open heart surgery.
I could not sleep last night so I spent time n the chapel. I initially begged God to save my baby that He had blessed me with 13 years ago. I pleaded for my ray of sunshine and tried to bargain by offering myself instead. By the time morning came I had laid my Pippy Chicken at His feet and said, “Thy will be done.” I know God can heal her…there is no doubt in my mind.
So, that is where we are at. Although the odds are not in our favor, I believe God IS.
Prayers, please.
Love, Gail
Aliviah's heart surgery was successful. There was less of infection than anticipated, which made the heart surgery easier. They were able to repair the mitral valve. They did not have to replace it.
As of right now they are putting in a trach and a feeding tube as this will help move her towards rehabilitation.
April 12, 2022 at 4:32pm
"ALIVIAH UPDATE: Aliviah’s intracranial pressure has been steadily rising and they are doing all they medically can to combat this. As you know from yesterday, they removed a significant part of her skull to allow for swelling of her brain. They are keeping her heavily sedated so that her brain does not have to work hard and create more swelling. There is still, of course, the fear of her having a new bleed. She is still critical and her doctor was very upfront with us when he said, “I fear for her life”. I so appreciate his honesty because it is the unknown that haunts us. They have put in an NG tube (nasogastric) with which they will eventually feed her
Anyway, we ARE in the unknown. The doctor said that they are trying to keep things quiet with low stimuli and keep the ICP stable over the next 48-72 hours. The would hope that the swelling will recede some but they are relatively certain in will increase. We are frightened but hopeful. For now we are concentrating on keeping her alive. If we are successful, then we will worry about brain damage and deficits…we will handle these as they come
Things just seem so dark right now. Pippy has always been the color yellow to me. She brings sunshine to our lives, makes us feel warm and makes me smile. It is like the sun has hidden itself behind a cloud and we are anxiously waiting for the sky to clear.
On another note, I am so grateful and completely and totally humbled by the outpouring of prayers, love, and support for our daughter and our family. I may not answer text (I am honestly not trying to be an ingrate or be rude) I am just overwhelmed. Thank you, each of you for every single thing you’ve done. I will update again as things happen…if you hear nothing, it’s probably a positive thing!
Much love,
Gail"
ALIVIAH update April 19, 2022 : OPEN HEART SURGERY DISCUSSION
Aliviah’s day started a week but earlier today. She had an MRI of her brain at 4:00am. They have also done the T.E.E. of her heart (sent a scope down her esophagus to better view her heart). She was sedated for these procedures so we are back to very sparse movements. I attended rounds with her staff and then met with one of her neurologists. The neurologist went over the results of her MRI and, since there are so many unknowns, I begged her to tell me worst case scenario, then I could celebrate every single accomplishment.
Almost the whole left side of her brain experienced damage, and some area on the right. What this entails right now calls for way too much speculation but as she awakens more they will be able to assess her better.
Right when you think one more straw will break you, that straw gets added just to test the limit. Upon speaking this morning with one of Aliviah’s cardiologist she was able to give us a little more detail about her heart. Aliviah has s mitral valve heart murmur. She had open heart surgery at 4 months old and when we brought her home from China we immediately made an appointment with a pediatric cardiologist. He ran tests and released her from his care saying that they had done a great job in China. Although there is no proof, I believe this heart murmur with regurgitation is relatively new. The first time I can recall hearing about the murmur was at the ill-fated doctor appointment in March. Let me just say that I do NOT blame her PA. I felt she had done a good lengthy assessment and ordered an X-ray ( which many would not do). None of us are perfect and she went for the obvious and 99% of the time she would have been correct. I respect her and would see her myself, in fact I DO whenever doctor is unavailable.
So here’s the scoop as I understand it…
Aliviah has vegetation on her mitral valve and there is always the fear/possibility of it breaking free, becoming an emboli, and creating more damage if it reaches the brain. There is also the regurgitation where her blood is back flowing where it’s not supposed to. And lastly, she has (what is believed to be) an abscess along the area where the valve connects to heart muscle.
If circumstances were optimal, cardio would have taken her to surgery immediately. But, as we all know, nothing is EVER easy. To perform the surgery, they would have to put her on a bypass machine….meaning the machine would be circulating her blood while they fixed her heart. To do this, they would have to give her medication to thin the blood. Along with the risk of the surgery itself on her brain, thinning the blood and make it bleed easier is almost unthinkable.
So, sometime today the cardiologists, neurologists, neurosurgeons, pediatric critical care doc, her care team, etc. will meet to discuss risks and benefits and they will bring their recommendations to Steve and me. This should happen before the end of the night.
That’s it for now."
ALIVIAH update April 20, 2022: OPEN HEART SURGERY
She started out the day with a cranial ultrasound as usual. Many doctors came to see her; each doing the same test—one after the other.
Met with the cardio-thoracic surgeon this morning. He explained all the complications of Pippy’s surgery. She is extremely high risk and we are, of course, frightened. They will try to repair her mitral valve but might not be able to. If this happens, they generally will replace it with an artificial valve. Because an artificial valve requires the patient to be on anticoagulant therapy for a long period of time, this is not an option for Pip. This means she would have perhaps cow tissue. If that happens, these do not hold up as well and she would eventually require another surgery.
Her situation is unique. The surgeon said that usually HE does his surgery FIRST then the neurosurgeon tackles the aneurysm. Because of Pip’s massive bleed this was not an option. Her neurosurgeon will be present during the surgery. They minced no words. They could not fathom a guess about survival.
The one ray of light is that today they changed visitation policy and Pip can now have 4 visitors. We are limited to two at a time/ 4 per day, but what a relief…her siblings will be able to visit!!
The cardio-thoracic surgeon is meeting with all the other cardiac surgeons to get THEIR opinions because her situation is so unique. He knows that some would not bother given the risks and the unknowns related to brain function after her bleed. He will meet with us again later tonight.
Tomorrow morning we sign consents. Tomorrow noon or after she will have open heart surgery.
I could not sleep last night so I spent time n the chapel. I initially begged God to save my baby that He had blessed me with 13 years ago. I pleaded for my ray of sunshine and tried to bargain by offering myself instead. By the time morning came I had laid my Pippy Chicken at His feet and said, “Thy will be done.” I know God can heal her…there is no doubt in my mind.
So, that is where we are at. Although the odds are not in our favor, I believe God IS.
Prayers, please.
Love, Gail
Aliviah's heart surgery was successful. There was less of infection than anticipated, which made the heart surgery easier. They were able to repair the mitral valve. They did not have to replace it.
As of right now they are putting in a trach and a feeding tube as this will help move her towards rehabilitation.
Anything is appreciated! Thank you, everyone, for your thoughts, support and prayers.