10 replies to this topic

[PaulaMommy]

Just an Update.
Bryson's Grandmother has the paper work filled out and talked to the head SCI nurse at Shriners in Phili, as well as the discharge nurse at ACH-I believe the discharge nurse and SCI nurse talked as well, to coordinate paperwork (his records for Shriners doctors to review for acceptance). He has to get on the smaller vent first, but the wheels are definitely in motion.
He's doing well, in good spirits. He's growing a "new bug" in his trach, I assume they are treating that now. Anyway, he's still having desats every once in awhile, seems to be when they move him to his chair, it happens more often.
Thanks again for all of your advice and thoughts. I will keep you informed on the possible/hopeful transfer.

[Theresar360]

PaulaMommy, on Mar 20 2008, 08:21 PM, said:

Just an Update.
Bryson's Grandmother has the paper work filled out and talked to the head SCI nurse at Shriners in Phili, as well as the discharge nurse at ACH-I believe the discharge nurse and SCI nurse talked as well, to coordinate paperwork (his records for Shriners doctors to review for acceptance). He has to get on the smaller vent first, but the wheels are definitely in motion.
He's doing well, in good spirits. He's growing a "new bug" in his trach, I assume they are treating that now. Anyway, he's still having desats every once in awhile, seems to be when they move him to his chair, it happens more often.
Thanks again for all of your advice and thoughts. I will keep you informed on the possible/hopeful transfer.

Paula, Where is Bryson now? I think I asked you before but have forgotten where you all live. I pray for him everyday. We went to see Victoria yesterday and she was one unhappy little girl. I think she is just plain sick of being away from her home and family. They are there everyday but it is not the same. She is due to go home next Thursday March 27 if everything goes as planned. She will be 2 on April 20 it just seems like yesterday when she was born. Things are still the same for her she is still on the vent and not showing anymore improvement. She still can't move from the neck down. If we tickle the bottoms of her feet her toes curl and sometimes her fingers move when you hold her hand but thats about all. I have to run and take my daughter too school will write more later.....Theresa

[PaulaMommy]

Thats great about her going home. Sorry to hear she isnt moving much yet. We are kinda the same here.

Bryson is at Arkansas Children's Hospital. Its a great pediatric hospital, the best in the state...but probably not so good SCI care/rehab. They are pushing him to go to 2 weeks of rehab and go home. Kimla (and me) just want to give him the absolute best shot at regaining function. At ACH, he gets good care, but he just sits there and gets sick over and over-lots of dangerous bugs going around that place, as most hospitals. SCI in Phili has a SCI pediatric vent weaning program, for example. Bryson also might be a candidate for a pacer. He might not get accepted, but its worth a shot. His grandmother would be going with him. I have been keeping Bryson's newborn baby sister the last few days-she is so precious! Anyway, family will help out in keeping her as well as Kimla's 2nd grade daughter.
Thank You for your continued prayer. I think and pray for Victoria often and check her page regularly. Hugs to all of you...
Paula

[Theresar360]

PaulaMommy, on Mar 21 2008, 01:56 PM, said:

Thats great about her going home. Sorry to hear she isnt moving much yet. We are kinda the same here.

Bryson is at Arkansas Children's Hospital. Its a great pediatric hospital, the best in the state...but probably not so good SCI care/rehab. They are pushing him to go to 2 weeks of rehab and go home. Kimla (and me) just want to give him the absolute best shot at regaining function. At ACH, he gets good care, but he just sits there and gets sick over and over-lots of dangerous bugs going around that place, as most hospitals. SCI in Phili has a SCI pediatric vent weaning program, for example. Bryson also might be a candidate for a pacer. He might not get accepted, but its worth a shot. His grandmother would be going with him. I have been keeping Bryson's newborn baby sister the last few days-she is so precious! Anyway, family will help out in keeping her as well as Kimla's 2nd grade daughter.
Thank You for your continued prayer. I think and pray for Victoria often and check her page regularly. Hugs to all of you...
Paula

OMG! I didn't know that Bryson had a newborn baby sister too! How sad. How old was she when the accident happened? This situation is as tragic as baby Victoria's just absolutely totally heartbreaking. I still cry at the drop of a hat. I can't help it! I look at her and think this year she would be having her first easter egg hunt and having so much fun. But instead she is still in the hospital and will only be able to search for eggs from a wheelchair if at all due to not being able to go far because of the vent. I know I sound awful and morbid but I just can't stop thinking this way lately. I know how lucky we are to have her and I would not trade her for the alternative but my God how does one deal with this. I love this baby with my whole heart and soul and just can't deal with what has happened. Some days I do better than others. I took care of her everyday while her mom worked from the time she was 3 weeks old until the day before the accident. I remember chasing her around the house and looking for her when she would hide from me and my mom her great-grandmother. She would giggle and scream and run from us. These days will never be again and it is so hard for me to deal with. I would trade places with her in a second but that can't be either. How does one learn to deal with a situation like this? I know that I am lucky to still have her with us she was seriously injured in fact when she was pulled from the car she had no heartbeat and was not breathing and according to the paramedic it took a while to revive her. She is also completely fine in her brain no damage at all which is unusual for the sever damage she had. She has a completely transected spinal cord, severe brain stem swelling and broken C-5, 6 and 7 vertebrae. I thought that it was 3,4 and 5 but my daughter informed me yesterday I was wrong. These are horrible injuries to sustain and still be alive with totally normal brain function so I should be more positive and count my blessings but I feel so bad for her sometimes it is so hard! Sorry for going off on my rambling she is sick again and I hate seeing her like this. I will write more later give Bryson a kiss and I will keep praying for him......Theresa

[PaulaMommy]

Your feelings are well justified. My son is the same age as Bryson and its hard to look at all the things he is doing and know Bryson wont be able to do them. For example, Tucker (my son) will climb something and it will pop in my head-Bryson cant even do that. That being said, Bryson himself is such a happy, spirited little boy. He can brighten anyone's day with his smile....and now that he is talking, he's so funny. All people are different. He might not be able to run, but can still do many other things. Life isnt always about what we can do physically. In fact, I think the mind and spirit are so much more influencial and important. Bryson and Victoria didnt deserve this, but with everyone's love and support, perhaps they can simply make the most of their injury. Its all about their *attitude* which will stem from everyone else's attitude.
My friend has a little girl with spinal bifida. They knew from the first ultrasound of her disability, so unlike you- they had time to prepare. Their little girl is now 5, in a wheelchair. She takes dance class (for kids in wheelchairs) and has the most positive, sweet spirit. Her dad told the story of one day he was trying to get her out of the van and into her wheelchair to go into school...it was raining and cold and in his mind he was thinking "this really is aweful!!" Obviously if it wasnt for her disability, she could have just ran in the school with her sister. Anyway, as her dad was frantically trying to get her out, while keeping her from getting wet, Katie (the little girl) looked up at him and said "Dad...its a SUNNY day!!" Her daddy said "What are you talking about-its raining and cold and miserable!" She said "That might be true-but I can see the sun behind those clouds!" This is a perfect example of a child given terrible circumstances and overcoming it with her positive outlook.
That being said, this is all still so new. Time will lesson the pain, I pray. Hang in there. Try to have a good Easter. Tell Victoria we said HI!!!

Paula

[Theresar360]

PaulaMommy, on Mar 22 2008, 06:46 PM, said:

Your feelings are well justified. My son is the same age as Bryson and its hard to look at all the things he is doing and know Bryson wont be able to do them. For example, Tucker (my son) will climb something and it will pop in my head-Bryson cant even do that. That being said, Bryson himself is such a happy, spirited little boy. He can brighten anyone's day with his smile....and now that he is talking, he's so funny. All people are different. He might not be able to run, but can still do many other things. Life isnt always about what we can do physically. In fact, I think the mind and spirit are so much more influencial and important. Bryson and Victoria didnt deserve this, but with everyone's love and support, perhaps they can simply make the most of their injury. Its all about their *attitude* which will stem from everyone else's attitude.
My friend has a little girl with spinal bifida. They knew from the first ultrasound of her disability, so unlike you- they had time to prepare. Their little girl is now 5, in a wheelchair. She takes dance class (for kids in wheelchairs) and has the most positive, sweet spirit. Her dad told the story of one day he was trying to get her out of the van and into her wheelchair to go into school...it was raining and cold and in his mind he was thinking "this really is aweful!!" Obviously if it wasnt for her disability, she could have just ran in the school with her sister. Anyway, as her dad was frantically trying to get her out, while keeping her from getting wet, Katie (the little girl) looked up at him and said "Dad...its a SUNNY day!!" Her daddy said "What are you talking about-its raining and cold and miserable!" She said "That might be true-but I can see the sun behind those clouds!" This is a perfect example of a child given terrible circumstances and overcoming it with her positive outlook.
That being said, this is all still so new. Time will lesson the pain, I pray. Hang in there. Try to have a good Easter. Tell Victoria we said HI!!!

Paula

Paula, Thanks you made me feel better. I don't know why but lately my days haven't been so good and I will find myself crying in the middle of the grocery store or any other unappropriate place. I think that this is all finally starting to really become reality. I know it is real but the closer it gets to her coming home the more real it gets. It is also scary bringing her home and hoping that everyone will be able to handle caring for her, after all she is leaving the comfort zone we all have this being the hospital. I am sure my daughter will do fine. Her being a nurse sure helps but she is still human and has to get her rest. She has her other daughter, who just turned 8, and her husband all to care for too. I worry about her because she feels she has to carry the weight of all this on her shoulders. I have tried numerous times to take some of the responsibility off her shoulders but she won't let me. I told the hospital chaplain about this the other day when we were talking and I told him how hurt I feel that she won't let me help her. He told me that beings she was the one that was driving the car she feels tremendous guilt for what happened to her children especially the baby. She feels that all the things that need to be done are her responsibility and that this is her"cross to bear". I felt just awful when he told me this and cried some more. I wish I could get her to listen to me and let me take some of the load off. She told me the other day that she knows I have enough to handle as my mom has been having problems with her heart and has needed my assistance lately. I explained to her that she is my daughter and love her just as much as she does hers and to see her struggle under the weight of all this is more than I can stand. I can and want to help her and I also told her if I couldn't I wouldn't ask her to let me. She still is being very stubborn about this. Hopefully as time goes on she will calm herself and let me in more. Isn't it just awful how tragedies can cause a family to just about completely fall apart. With us we have grown closer in some ways but in other ways I am waiting for someone to crack and have a breakdown. Paula thank you so much for being there to listen to my ranting and raving. When I get off the computer after writing you I usually feel better! God Bless you and Bryson.....Theresa

[PaulaMommy]

Well for the record, I dont think there are any "inappropriate places" to cry in a situation like this!
I just hate that for your daughter, her feelings of guilt. My heart just BREAKS for her. Being a mommy too-I could so see how that could happen. We put so much pressure on ourselves as it is---ugh I can only imagine how she feels. But she has to realize that some things are simply not in our control. I'm so very sorry you and your family are going thru this. And if someone does crack and have a breakdown-just let it be....its bound to happen under this tremendous pressure and thats OK. In the end, you will all be stronger and bigger/better people and be able to give this sweet girl a wonderful life full of happiness.
Hang in there....

[Theresar360]

PaulaMommy, on Mar 24 2008, 07:32 PM, said:

Well for the record, I dont think there are any "inappropriate places" to cry in a situation like this!
I just hate that for your daughter, her feelings of guilt. My heart just BREAKS for her. Being a mommy too-I could so see how that could happen. We put so much pressure on ourselves as it is---ugh I can only imagine how she feels. But she has to realize that some things are simply not in our control. I'm so very sorry you and your family are going thru this. And if someone does crack and have a breakdown-just let it be....its bound to happen under this tremendous pressure and thats OK. In the end, you will all be stronger and bigger/better people and be able to give this sweet girl a wonderful life full of happiness.
Hang in there....

Paula, Sorry for taking so long in getting back to you. I have been really busy helping my daughter Angela get ready to bring baby Victoria home tomorrow. We are really excited. Her dining room looks like a hospital! There is more supplies and equipment I think at her home than in her hospital room.
She brought something up to me yesterday that is concerning. She said that Victoria is getting bald spots on her head. Last night she said she was brushing her hair and a big clump of hair just came off of her scalp and into the brush. She said it reminded her of someone having chemo and their hair falling out. She said she brought it to the attention of the doctor and he did not know what to make of it. I suggested a vitamin deficiency or maybe just plain depression and stress. This poor baby I just want things to get as good as they can for her and have her happy. I think her coming home will be the best medicine that money can buy!
There was a home nurse at the house yesterday and he brought all the equipment and supplies she needs to get settled at home. He told me that he has seen kids like her go home and flourish. He said I wouldn't be the lest bit suprised if she loses her ventilator eventually. Gosh wouldn't that be something.
I have to go and get the girls in for dinner. I will let you know tomorrow how things went with her homecoming. How is Bryson? Have they heard anything from the hospital that they applied to? Give him and kiss and I am praying for him......Theresa

[PaulaMommy]

Well I'm anxious to hear how she does when she comes home!! I bet she'll be so happy. Thats so great what that nurse said. I think thats one thing Kimla and I have talked about-is will Bryson get better or worse once he goes home or does he need to go to rehab at Shriners and hopefully get off the vent there. Basically is there a better chance for him to get off the vent there or at home? So looks like we are in the same boat-wanting the babies to get off the vents!
Regarding the hair loss, have they checked her thyroid? And I'm assuming a dietician is checking her intake to make sure she's getting what she's supposed to, nutrition wise.
Maybe a SCI knowledgeable person will chime in on that.

here is an update on Bryson via email from Kimla to me today: (he has been desating quite a bit and they are trying to figure out why):

update on Bryson, we had a good day today. They are doing a scan tomorrow or Friday to check the lower part of his left lung. Is it filled with mucous or permenantly bruised from the accident? The next step after that is a procedure to put him to sleep and go down his trach and suck the mucous out and see if it puffs out again. If it is bruised from the accident Wendy (main nurse) said there is nothing that can be done. This is what they are doing to figure out why he is desating.

[PaulaMommy]

They are trying to figure out why Bryson keeps desating, thus why they cant get him off the big Servo vent and then to rehab....
Anyway, they did a scan and the bottoms of his lungs are collapsed. RT told Kimla this was "nothing new," that it had been this way for awhile. But maybe they'll go in now with a scope? and see if they can get the mucus out and fix them.
Kimla is having a big meeting in the morning with all the doctors. So I'm anxious to hear what the plans are.

[Theresar360]

PaulaMommy, on Mar 30 2008, 07:37 PM, said:

They are trying to figure out why Bryson keeps desating, thus why they cant get him off the big Servo vent and then to rehab....
Anyway, they did a scan and the bottoms of his lungs are collapsed. RT told Kimla this was "nothing new," that it had been this way for awhile. But maybe they'll go in now with a scope? and see if they can get the mucus out and fix them.
Kimla is having a big meeting in the morning with all the doctors. So I'm anxious to hear what the plans are.

Paula, Please let us know! I pray for little Bryson daily.....Theresa