Wonderful update about granddaughgranddaughter UPDATE 7/5/24
Jun 22, 2024 0:01:43 GMT
mimima, **GypsyGirl**, and 31 more like this
Post by katiekaty on Jun 22, 2024 0:01:43 GMT
UPDATE 7/31/24
Madison has been doing amazing! She is ver far ahead of the goals set by the transplant team! The team has reduced some of hers, changed some and eliminated a few, which has added up a more manageable regimen for her and her mom. Maddy made a chart so she can keep track of when and what times and can check them. Her mom says she could have have a nursing career but the team says she will need to avoid that risky option as a career, so she’s back to thinking of being a computer nerd or artist or architect or maybe even a mom someday if she and her partner gets genetic testing! The life of a teenager when everything is still possible!
But the really good news? They got the go ahead to go back home this weekend, so they packed up and headed home on Sunday!She still has to get lab work twice a week. She will still have precautions as was expected! She has put up all the cards on her wall using some kind of braided cord and tiny clothespins so she can remember all the good wishes and loving thought from everyone on here! Thanks again for everyone, it was and is still so much appreciated!
the team also told she could start school when it starts again. She is home schooled, but has an in class program one day a week for life skills, tutoring, physical education, “social skills “ (she thinks this silly-but it is cool as it includes manners, introductions, table skills, settings and how to properly conduct yourself, respect for others and yourself, how to be a guest, etc) and if they want a class, they can write a proposal and help find a teacher to do it and learn how to make things happen. Last year they talk the admin into a dog training class so they could learn how to train dogs since they all has crazy dogs. And they got it! The only difference is she will have to wear a mask and wash her hands and use lots of hand sanitizer and keep to small groups. She is fortunate they only have 6-7 students per class. She will be a junior this year. And even better, they told she could start driving lessons, which had to be put on hold due to all this craziness!
we are so blessed that life is returning to normal again for her. There will still be many ups and downs. Any slight fever, barely there abdominal pain, hand or foot flushing, paleness that doesn’t go away, etc. will mean a three hour drive to Minneapolis for a ER visit evaluation by the transplant team, lab work several times a week, but she has a good head on her shoulders and really understands what is going on.
we are also thankful and grateful that there people willing to be donors and families willing to follow their family members wishes. So, if you haven’t, please think about checking off donor in the back of your drivers license or letting your family know you wishes! You might just be saving the next 16 year beloved granddaughter or another beloved family members life!
so, thanks again everyone for your support, I will be around a bit more! And I will try to get those photos I promised uploaded! An if you are of a mind, please send a few more cards to Maddy whenever yo get a chance wishing her the best and a continued great recovery!
Thanks,Katie
UPDATE 7/5/24
Just after midnight and I still can’t fall asleep so I thought I would a quick update on Maddy. Early this morning she woke with severe abdominal pain and shortness of breath and anxiety. My daughter gave her her scheduled pain meds a little early and after an our an a half with no relief, called the transplant team who said give another dose and give it another hour or two and if not better to go into the ER. She did take he in and they ran tests, CT and ultrasound and most was clear but labs were elevated. The team has admitted her for dehydration and possible infection. They are monitoring closely for any signs of rejection. Liz and I have talked a few times since they went to the ER and Maddy is scared and filled with anxiety about her new liver! It’s heartbreaking to speak with and try to reassure that the doctors can handle this and will take good care of her. Please keep her in your thoughts and prayers! I am just so glad they were so close to the hospital! I think my new favorite charity is going to be Ronal McDonald house! They even called Liz to see if she needed anything including meals brought to her! How amazing is that? And if you can , please keep sending cards, they make her so happy!
UPDATE 7/2/24
Madison has been discharged from the hospital. My daughter and her are staying at the Ronald McDonald’s House just a few blocks away, less than 5 minutes from the hospital. Over the next few weeks she has scheduled appoints for labs, surgeon, doctors, transplant team, social and child life advocacy meetings, X-rays and ultrasounds, and whatever else they deem is necessary. The transplant coordinator has been great in keeping appointments to a minimum of 3 or so days a week and back to back so there is limited contact, hours etc. so she doesn’t get too worn out. There is a therapist that will visit her 3 times a week to help her exercise so she can keep her strength up. She is so disappointed to feel so weak as she is a dancer and it is up in the air if or when she will be able to return to dance classes. The therapist was a dancer as a high school student as says she will work on some exercises so she will still feel like she can dance again. As far as scouting goes, she wants to do something along the lines of writing about her experiences and share with other girls and maybe do some fund raising for R McD Hose as she calls it. They have bee there for a day or so so and she says it’s better than the hospital, friendlier than a hotel, but she wishes she was at home!
she wants to thank everyone that has sent cards and presents and she loves them all so much.
Cards should now be sent to:
Madison Hinz
42740 US HWY 63
Cable, WI 54821-4596
someone from there will be going to see and bring mail, etc. to her and my daughter several times a week and will bring anything sent her. They will be staying in Minneapolis for at least another month.
i will post photos in the morning. I myself haven’t really been feeling that great for that past four or so days-seems to just a sinus infection/allergies.
UPDATE 6/25/24
yesterday Madison slept a lot and was awake mostly for meals and therapy. The doctors and nurses assured my daughter this was normal as the third day kicks in. She was really down yesterday evening getting her days mixed up, thinking it was more like a week after surgery and everyone forgot about her until several nurses showed their phones to her to assure she really only slept most of most Monday not “forever”!
she walked again today but only managed about 35 feet before returning to her room. She has a PCA for pain but doesn’t really want to use it because it makes her too sleepy. She’s afraid of falling asleep for too long and not being able to wake up. Everyone keeps trying to assure her that ont happen and they won’t let it happen. It’s scary to hear talk about fear when she never had any real fears before.
she got her first card today from her great grandmother that was sent on Friday, so she is hoping for more as it made her feel connected outside of the hospital. A package my other daughter sent was misplaced at the post office was delayed but she has two packages that I sent yesterday that Amazon sent and arrived early today. They will be delivered to her in the morning. I should bring her some distraction.
i have had several of the Peas ask about sending some small thins for her and if we could set up an Amazon Wishlist. My daughter really isn’t into setting up a wishlist but isn’t opposed to sending small things to Madison that might help occupy her time. She doesn’t want Madison to learn to play off her illness or use it as personal gain. However, if someone should desire to give her something, keep it small, please and low in monetary value. Madison is a voracious reader and still like paper back books—appropriate age related 16 year old books , girl detective, scientist, explore, computer geek type books. She also loves crafts, latch hook, small embroidery, hand sewn craft amigurami stuffed animals, beading projects, peeler bead projects, etc. Her diet is pretty much unlimited with the exception of low sodium, low fat, no peanuts, no chocolate for now—so any individual type of snacks is fine. Oh, she is also a wonderful artist and like charcoal drawing, pastels. She’s does diamond painting too. Please remember, this is nothing but a list of things she like to do that doesn’t require excess physical activity but keeps her mind occupied. Anything you send can be sent to the address below. Amazon did a great job with my delivery.
And, please send a card or two, she is very excited to receive these!
UPDATE 6/23/24
Madison is improving. She made through the surgery and into recovery about midnight Friday night. Yesterday mid morning PT saw her and she was awake, alert and and the goal was to get out of bed and ambulate to the door and to the chair. She actually made about fifty feet and surprised her mom and my DH in the ICU family waiting room.
The doctors were able to close the incision fully as the liver she received was very healthy and not too big. Late yesterday evening they removed the central line, placed a PICC line for longer use, discontinued her oxygen and got her into the chair after walking about the room again. Her urine is still dark but improving.
please keep sending cards as her spirits are low today and the few she received from friend and family seem to revive her some. Any kind would be welcome from the silly to the pretty. I thank you again in advance. Later today they are hoping to move her to a step down unit room since she is on track or slightly better than expected with the new liver transplant! She is an amazing young girl and we are all so grateful. We know that everyone’s thoughts and prayers have contributed to health improvement!
I hope to include a photo or two next update. I will keep the Peas informed of her progress.
6/21/24My granddaughter suffered irreversible liver failure this past weekend from previously undiagnosed Wilson’s Disease. Wilson’s Disease is a rare genetic disease where the liver doesn’t produce an enzyme that binds with copper preventing it from building up in the liver and other organs in the body. By Monday she was beginning to have issues with her kidneys also. The doctors managed to get the kidneys working better and get her stabilized and she was put on the National Liver Transplant list with the highest status of 1a. A liver became available this morning and she is still in surgery. She will be heavily sedated over the next week once the transplant surgery is complete pending more surgeries to close the abdomen as the liver shrinks to fit itself in her body. She is a tiny little thing for being 16, just like my daughter and her aunt! Doctors are so positive for her outcome but healing will be long and arduous for her, especially as she is a teenager as this occurred in the matter of just 72 hours!
Prior to that, she spent the first week of June hiking and camping with her mom, my son and her brother in the Wisconsin Dells. The next week was off to Girl Scout camp and last week was Computer Camp. This girl gets around. She will have to pass on a further to weeks of scout camp and more scheduled activities over the rest of summer.
So if you can, would you please be so kind as to send a card with words of encouragement, wishes of getting well, etc—she isn’t too religious as she is still exploring those options open to her but I don’t think she would mind anything thing religious at all!
By the way, her brother was diagnosed with Wilson’s 18 months ago and he is doing well with first and medications.but they had not yet did very in deep test on Madison as yet because she was so healthy and her lab work always tested fine.
Here is the address where to send the cards:
Madison Hinz
University of Minnesota Fairview Masonic Children’s Hospital
2450 Riverside Ave
Minneapolis, MN 55454
United States
Thanks in advance for all your thought, prayers and all cards that you may send! It would be so wonderful for to wake in a room filled with cards! Thanks again!
(Please note this has been hard to ask and hard to share as sharing anything so personal is hard for and this whole thing is just tearing me up! I would just give y live for any of my grandchildren. She is just such a beautiful soul in this world!)
PS: believe it or not, she can read cursive!😁
Madison has been doing amazing! She is ver far ahead of the goals set by the transplant team! The team has reduced some of hers, changed some and eliminated a few, which has added up a more manageable regimen for her and her mom. Maddy made a chart so she can keep track of when and what times and can check them. Her mom says she could have have a nursing career but the team says she will need to avoid that risky option as a career, so she’s back to thinking of being a computer nerd or artist or architect or maybe even a mom someday if she and her partner gets genetic testing! The life of a teenager when everything is still possible!
But the really good news? They got the go ahead to go back home this weekend, so they packed up and headed home on Sunday!She still has to get lab work twice a week. She will still have precautions as was expected! She has put up all the cards on her wall using some kind of braided cord and tiny clothespins so she can remember all the good wishes and loving thought from everyone on here! Thanks again for everyone, it was and is still so much appreciated!
the team also told she could start school when it starts again. She is home schooled, but has an in class program one day a week for life skills, tutoring, physical education, “social skills “ (she thinks this silly-but it is cool as it includes manners, introductions, table skills, settings and how to properly conduct yourself, respect for others and yourself, how to be a guest, etc) and if they want a class, they can write a proposal and help find a teacher to do it and learn how to make things happen. Last year they talk the admin into a dog training class so they could learn how to train dogs since they all has crazy dogs. And they got it! The only difference is she will have to wear a mask and wash her hands and use lots of hand sanitizer and keep to small groups. She is fortunate they only have 6-7 students per class. She will be a junior this year. And even better, they told she could start driving lessons, which had to be put on hold due to all this craziness!
we are so blessed that life is returning to normal again for her. There will still be many ups and downs. Any slight fever, barely there abdominal pain, hand or foot flushing, paleness that doesn’t go away, etc. will mean a three hour drive to Minneapolis for a ER visit evaluation by the transplant team, lab work several times a week, but she has a good head on her shoulders and really understands what is going on.
we are also thankful and grateful that there people willing to be donors and families willing to follow their family members wishes. So, if you haven’t, please think about checking off donor in the back of your drivers license or letting your family know you wishes! You might just be saving the next 16 year beloved granddaughter or another beloved family members life!
so, thanks again everyone for your support, I will be around a bit more! And I will try to get those photos I promised uploaded! An if you are of a mind, please send a few more cards to Maddy whenever yo get a chance wishing her the best and a continued great recovery!
Thanks,Katie
UPDATE 7/5/24
Just after midnight and I still can’t fall asleep so I thought I would a quick update on Maddy. Early this morning she woke with severe abdominal pain and shortness of breath and anxiety. My daughter gave her her scheduled pain meds a little early and after an our an a half with no relief, called the transplant team who said give another dose and give it another hour or two and if not better to go into the ER. She did take he in and they ran tests, CT and ultrasound and most was clear but labs were elevated. The team has admitted her for dehydration and possible infection. They are monitoring closely for any signs of rejection. Liz and I have talked a few times since they went to the ER and Maddy is scared and filled with anxiety about her new liver! It’s heartbreaking to speak with and try to reassure that the doctors can handle this and will take good care of her. Please keep her in your thoughts and prayers! I am just so glad they were so close to the hospital! I think my new favorite charity is going to be Ronal McDonald house! They even called Liz to see if she needed anything including meals brought to her! How amazing is that? And if you can , please keep sending cards, they make her so happy!
UPDATE 7/2/24
Madison has been discharged from the hospital. My daughter and her are staying at the Ronald McDonald’s House just a few blocks away, less than 5 minutes from the hospital. Over the next few weeks she has scheduled appoints for labs, surgeon, doctors, transplant team, social and child life advocacy meetings, X-rays and ultrasounds, and whatever else they deem is necessary. The transplant coordinator has been great in keeping appointments to a minimum of 3 or so days a week and back to back so there is limited contact, hours etc. so she doesn’t get too worn out. There is a therapist that will visit her 3 times a week to help her exercise so she can keep her strength up. She is so disappointed to feel so weak as she is a dancer and it is up in the air if or when she will be able to return to dance classes. The therapist was a dancer as a high school student as says she will work on some exercises so she will still feel like she can dance again. As far as scouting goes, she wants to do something along the lines of writing about her experiences and share with other girls and maybe do some fund raising for R McD Hose as she calls it. They have bee there for a day or so so and she says it’s better than the hospital, friendlier than a hotel, but she wishes she was at home!
she wants to thank everyone that has sent cards and presents and she loves them all so much.
Cards should now be sent to:
Madison Hinz
42740 US HWY 63
Cable, WI 54821-4596
someone from there will be going to see and bring mail, etc. to her and my daughter several times a week and will bring anything sent her. They will be staying in Minneapolis for at least another month.
i will post photos in the morning. I myself haven’t really been feeling that great for that past four or so days-seems to just a sinus infection/allergies.
UPDATE 6/25/24
yesterday Madison slept a lot and was awake mostly for meals and therapy. The doctors and nurses assured my daughter this was normal as the third day kicks in. She was really down yesterday evening getting her days mixed up, thinking it was more like a week after surgery and everyone forgot about her until several nurses showed their phones to her to assure she really only slept most of most Monday not “forever”!
she walked again today but only managed about 35 feet before returning to her room. She has a PCA for pain but doesn’t really want to use it because it makes her too sleepy. She’s afraid of falling asleep for too long and not being able to wake up. Everyone keeps trying to assure her that ont happen and they won’t let it happen. It’s scary to hear talk about fear when she never had any real fears before.
she got her first card today from her great grandmother that was sent on Friday, so she is hoping for more as it made her feel connected outside of the hospital. A package my other daughter sent was misplaced at the post office was delayed but she has two packages that I sent yesterday that Amazon sent and arrived early today. They will be delivered to her in the morning. I should bring her some distraction.
i have had several of the Peas ask about sending some small thins for her and if we could set up an Amazon Wishlist. My daughter really isn’t into setting up a wishlist but isn’t opposed to sending small things to Madison that might help occupy her time. She doesn’t want Madison to learn to play off her illness or use it as personal gain. However, if someone should desire to give her something, keep it small, please and low in monetary value. Madison is a voracious reader and still like paper back books—appropriate age related 16 year old books , girl detective, scientist, explore, computer geek type books. She also loves crafts, latch hook, small embroidery, hand sewn craft amigurami stuffed animals, beading projects, peeler bead projects, etc. Her diet is pretty much unlimited with the exception of low sodium, low fat, no peanuts, no chocolate for now—so any individual type of snacks is fine. Oh, she is also a wonderful artist and like charcoal drawing, pastels. She’s does diamond painting too. Please remember, this is nothing but a list of things she like to do that doesn’t require excess physical activity but keeps her mind occupied. Anything you send can be sent to the address below. Amazon did a great job with my delivery.
And, please send a card or two, she is very excited to receive these!
UPDATE 6/23/24
Madison is improving. She made through the surgery and into recovery about midnight Friday night. Yesterday mid morning PT saw her and she was awake, alert and and the goal was to get out of bed and ambulate to the door and to the chair. She actually made about fifty feet and surprised her mom and my DH in the ICU family waiting room.
The doctors were able to close the incision fully as the liver she received was very healthy and not too big. Late yesterday evening they removed the central line, placed a PICC line for longer use, discontinued her oxygen and got her into the chair after walking about the room again. Her urine is still dark but improving.
please keep sending cards as her spirits are low today and the few she received from friend and family seem to revive her some. Any kind would be welcome from the silly to the pretty. I thank you again in advance. Later today they are hoping to move her to a step down unit room since she is on track or slightly better than expected with the new liver transplant! She is an amazing young girl and we are all so grateful. We know that everyone’s thoughts and prayers have contributed to health improvement!
I hope to include a photo or two next update. I will keep the Peas informed of her progress.
6/21/24My granddaughter suffered irreversible liver failure this past weekend from previously undiagnosed Wilson’s Disease. Wilson’s Disease is a rare genetic disease where the liver doesn’t produce an enzyme that binds with copper preventing it from building up in the liver and other organs in the body. By Monday she was beginning to have issues with her kidneys also. The doctors managed to get the kidneys working better and get her stabilized and she was put on the National Liver Transplant list with the highest status of 1a. A liver became available this morning and she is still in surgery. She will be heavily sedated over the next week once the transplant surgery is complete pending more surgeries to close the abdomen as the liver shrinks to fit itself in her body. She is a tiny little thing for being 16, just like my daughter and her aunt! Doctors are so positive for her outcome but healing will be long and arduous for her, especially as she is a teenager as this occurred in the matter of just 72 hours!
Prior to that, she spent the first week of June hiking and camping with her mom, my son and her brother in the Wisconsin Dells. The next week was off to Girl Scout camp and last week was Computer Camp. This girl gets around. She will have to pass on a further to weeks of scout camp and more scheduled activities over the rest of summer.
So if you can, would you please be so kind as to send a card with words of encouragement, wishes of getting well, etc—she isn’t too religious as she is still exploring those options open to her but I don’t think she would mind anything thing religious at all!
By the way, her brother was diagnosed with Wilson’s 18 months ago and he is doing well with first and medications.but they had not yet did very in deep test on Madison as yet because she was so healthy and her lab work always tested fine.
Here is the address where to send the cards:
Madison Hinz
University of Minnesota Fairview Masonic Children’s Hospital
2450 Riverside Ave
Minneapolis, MN 55454
United States
Thanks in advance for all your thought, prayers and all cards that you may send! It would be so wonderful for to wake in a room filled with cards! Thanks again!
(Please note this has been hard to ask and hard to share as sharing anything so personal is hard for and this whole thing is just tearing me up! I would just give y live for any of my grandchildren. She is just such a beautiful soul in this world!)
PS: believe it or not, she can read cursive!😁
