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Post by femalebusiness on Jun 6, 2018 16:00:13 GMT
Spencer looks great! It is very apparent that he is much better. I am just thrilled for you both. That puppy is adorable.
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Post by grammadee on Jun 6, 2018 16:07:18 GMT
Yeah, I would say that puppy has found a home! Glad Spencer is getting out and about. Hope they can find a way to repair the nerve so he can enjoy food again. Thanks, canadianscrappergirl, for the update and the photos.
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Deleted
Posts: 0
May 20, 2024 11:04:08 GMT
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Post by Deleted on Jun 6, 2018 16:20:18 GMT
Seeing those latest photos of Spencer bowling and with Boomer brightened my day! It's easy for me to say don't be so hard on yourself, but I think we all tend to beat ourselves up for things we perceive we can change. You did the BEST you could do at that given moment. Sure, you would do some things differently, but hindsight is 20/20. Hoping for Spencer's continued improvement in the days ahead!
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Post by Anne-Marie on Jun 6, 2018 16:59:38 GMT
Awwwww, beautiful photos and amazing update! SOOO glad for some happy news!
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gramma
Pearl Clutcher
Posts: 2,907
Location: Sacramento, Ca
Aug 29, 2014 3:09:48 GMT
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Post by gramma on Jun 6, 2018 18:16:25 GMT
OH MY - He looks so much better!!
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oaksong
Drama Llama
Posts: 6,164
Location: LA Suburbia
Site Supporter
Jun 27, 2014 6:24:29 GMT
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Post by oaksong on Jun 6, 2018 19:50:07 GMT
I’m happy to see Spencer improving so well!
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purplebee
Drama Llama
Posts: 6,734
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Jun 6, 2018 20:56:55 GMT
Happy boy and happy puppy! Glad to see Spencer out and having fun.
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kate
Drama Llama
Posts: 5,517
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Jun 6, 2018 22:10:44 GMT
What a pair! I love these pictures. Thanks for sharing them and for the updates.
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Post by jackietex on Jun 7, 2018 2:36:40 GMT
The new puppy could be Spencer’s twin! Look at Spencer’s gaze in pic #2, it’s the same as the puppy’s. ❤️ I’m glad he’s feeling well enough to get out and bowl. I’m so glad you and Dh are communicating better and considering each other. It’s so easy to forget. I’m proud of you. I thought they looked alike, too! I think it's because they both exude a sweet innocence.
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Post by LavenderLayoutLady on Jun 7, 2018 5:04:22 GMT
Wonderful update!
I love seeing the photos of Spencer at the bowling alley, and with the puppy. He looks great.
Lots of hugs to you. You have handled these 300 days with grace and strength. You continue to amaze me.
As always, you, Spencer, and your whole family will be in my prayers.
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Post by LiLi on Jun 7, 2018 5:10:55 GMT
Oh my gosh, your pictures made me tear up. So wonderful that things are finally moving forward!
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Post by garagesaler on Jun 7, 2018 6:48:15 GMT
So glad to see Spencer out and having fun!
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Post by cawoman on Jun 7, 2018 7:22:38 GMT
I too wanted to say what a great update!! The pics of Spencer are cute and so inspiring. Gosh, you have all come a long way. It’s amazing! Congratulations on all of your hard work.
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Post by canadianscrappergirl on Jun 11, 2018 17:46:31 GMT
Hi everyone sorry for the long post but its been a rough couple of days.
On Friday another neurologist did some more testing on Spencer's jaw/face similar to the testing he had a few weeks ago. He also had an MRI on Saturday he thought it was for his brain but they say it was for his jaw.
I was at home when he called me about the MRI. I told him I needed to talk to his nurse. I said is the unit aware that his valve from his shunt may need to be re-programmed as the MRI may have altered the setting. The valve controls the rate of the CSF drained from the shunt.
She said there was nothing on his chart to that effect I said well I know for the valve prior to having the shunt externalized it was one affected by an MRI. She said she would call Neuro and find out. It did need to be reset ugh seriously!! The nurse said she was so sorry and that she was addressing this with the charge nurse and unit doctors.
This could have been life threatening for Spencer had the valve not been reset!
As I had mentioned in my last update the neurologist who did the first testing on Spencer's jaw said he was referring him to a plastic surgeon. The plastic surgeon called on Saturday and said he would like to meet with me on Sunday and discuss the findings of the latest tests and MRI. I had a gut feeling it wasn't going to be good by his demeanor on the phone.
He sat with Spencer, myself and his dad and went over the last test. He said from this test they saw that the trigeminal nerve on both sides of his face are severely damaged. We initially were told it was just one side of his face. This nerve is for motor function and biting and chewng and to move your jaw from side to side. It's also for facial sensation. Its the largest cranial nerve.
He said only the motor part is damaged not the sensation.
He said that this is unheard of patients normally can't open their jaw He can open it but Spencer is unable to close his. I believe he said there is only one other case of this.
They feel the nerves received their damage when he suffered the high hydrocephalus episode on the morning of August 11th where he was found unresponsive. They feel the brain stem was damaged thus damaging the 5th nerve.
He said the nerve on both sides of his face has atrophied.
He said the only way to fix it would be surgery doing a cross facial nerve graft. It is a 6 hour surgery. They do incisions similar to a facelift.
They would take a redundant nerve branch and attach it to the nerve that is damaged.
There are 3 areas they can get the nerve from his cheek, tongue or shoulder. All have their own risks.
The reduntant nerve from his face controls movement of lips, eyes, cheeks etc.
There is a chance he would lose motor function to his lips tongue or shoulder.
It could weaken the strength of these areas as well.
He said with nerve grafts the longer a damaged nerve is left untreated the less likely it will recover. He said because this has gone untreated for almost 10 months the odds are not in our favor for a successful result.
There is a chance Spencer may lose what ability he has to eat. He could lose his ability to speak. He said it would take close to a year to see if the surgery is a success.
He told us that it is a lot to take in but that time is against us and if we decide to do the surgery it has to be done soon.
He feels the risks out weigh the benefits.
He wrote down things I could look up regarding the surgery etc. He was very kind and thorough.
Poor Spencer just sat there looking confused I asked him if he understood what the doctor was saying he didn't.
I had to tell him that he was probably going to have to eat a pureed diet for the rest of his life. It was the hardest thing I've ever done.
He is devastated it was the one thing he wanted more then anything was to eat normally again.
I said to the doctor I tried for months to get them to adress the jaw but there was always more pressing things. Later last night I looked thru notes I had made prior to meetings with Drs and as early as October I had addressed it but I never followed thru to make it happen I failed him.
I feel so responsible for this I should have pushed harder the guilt I'm feeling is unbearable. The devastation in his face killed me. He cried so hard afterwards he ended up vomiting 3 times.
Between the MRI and this I feel like I always have to be on point and even when I am I'm failing him.
His dad tries but honestly he doesn't understand a lot of the medical jargon.
I told him later after we left I'm worried about Spencer now. He said I shouldn't show how upset I am over this in front of him. He feels we have to be positive.
I told him we are grieving and that if it were me being told this I don't know how I would handle it.
Food is such a part of life. Yes he can eat pureed food yes it's not a tube feed but it is very limiting. Everywhere you look you see food, watching tv now is almost unbearable. We went to a fast food resturant on the way home and I broke down because I thought about Spencer.
I feel guilty for all the times Spencer and I would discuss what meals I'd cook for him when he got home and what restaurants he wanted to go to. It was something he talked about a lot. He looked forward to Friday fires with his dad and eating hotdogs and smores and going for beers and wings again.
I guess we thought it was fixable and that was the biggest mistake I made was giving him hope.
As I write this I'm crying because I don't know how to put a positive spin on this for him. I pray he can recover from this latest news.
I will forever feel guilty that I didn't push hard enough to get that looked at sooner.
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Post by kkrenn on Jun 11, 2018 18:18:15 GMT
I am so sorry for this latest news and I wish I could give you a big hug.
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inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Jun 11, 2018 18:30:04 GMT
I wish I could hug you. I'm sorry for the bad news.
My older son was a very difficult baby. He cried a lot. I felt like a constant failure. I couldn't comfort my own baby. One day, my mom hugged me and said, "you are the best person to be his mom. No one can make him feel the way you do."
You are the best person to be Spencer's mom. You have not failed him. You have advocated and fought and worked to be there for him.
I hope you can all take time to process today's news and grieve. I wish things were otherwise.
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Post by kikitwo on Jun 11, 2018 19:39:19 GMT
I'm so sorry to hear this news. You're doing a great job--no one could have done better. My prayers are with you and your family.
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Post by mikklynn on Jun 11, 2018 20:29:28 GMT
I am so sorry to see the latest update.
You are NOT to blame. You are not a neurologist or other physician. Spencer is a very complex patient. I want to assign blame, but sometimes there is no one person to blame.
Hugs, mom.
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Post by jenjie on Jun 11, 2018 20:36:01 GMT
You have NOT failed him! You have been an excellent advocate for him. Are you going to try to get a second opinion of do you feel too much time has been wasted?
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Post by cadoodlebug on Jun 11, 2018 20:36:21 GMT
I am so sorry to hear this latest update. Please do not blame yourself ~ you are a wonderful mom to Spencer and have an incredible advocate for him. Big hugs.
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rodeomom
Pearl Clutcher
Refupee # 380 "I don't have to run fast, I just have to run faster than you."
Posts: 3,661
Location: Chickasaw Nation, Oklahoma
Jun 25, 2014 23:34:38 GMT
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Post by rodeomom on Jun 11, 2018 20:52:53 GMT
canadianscrappergirl I'm so sorry for this news. But please don't blame yourself. This is not your fault. You are doing everything that is humanly possible for a mother to do. You are not a Dr. you didn't go to med school. They are the ones who missed this.
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Post by scrapmaven on Jun 11, 2018 20:59:29 GMT
You are absolutely not to blame for anything. This is a medical issue not a bad mom issue. You're a great mom and you have been there for your son at every single turn. You are a great advocate for Spencer and you will get through this stuff w/him. Finding out that you won't be able to eat normally is a huge blow. I won't lie. It's bad news, but you adjust and learn to cope w/it.
Tube feeding is abnormal until you're the one doing it and are used to it. Pureeing stuff is something that Spencer will also get used to. Pureed food tastes the same as regular food, it's just pureed. Sometimes it is hard to not be able to eat normally; however, most of the time he'll be so used to it that it will be 2nd nature. Give Spencer time to process this news and he'll adjust to it. Allow him to feel robbed, angry, sad and hungry. That is part of the process of giving up regular eating. It does get much easier to accept and do, over time. It's just a huge punch in the gut when he's already suffered so much. I feel for Spencer and you. There's no way to make this easier or less punishing. However, your boy will find happiness in his life despite the food limitations. He will.
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Post by jenjie on Jun 11, 2018 21:03:04 GMT
scrapmaven have I told you lately that I love you?
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Post by scrapmaven on Jun 11, 2018 21:06:47 GMT
scrapmaven have I told you lately that I love you? Awwww. Hey, I'm a major foodie, who loves to cook and bake and I can't eat any of it. If I can get used to this anyone can. It just takes getting used to.
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Post by 5peanutsnana on Jun 11, 2018 23:11:36 GMT
So sorry for your latest update. You are in no way to blame for this situation! You have been Spencer's champion through every step of his journey and your devotion to him is palpable. Please treat yourself kindly. You are an amazing mom are to be admired.
Continued prayers for both you and Spencer.
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Post by Lexica on Jun 11, 2018 23:13:28 GMT
Once again, you are beating yourself up for something that isn’t your fault. You DID ask the doctors about this back in October. Did you know the ramifications of delaying any treatment? No. If you did, you would have pushed harder. From all that you have posted in your updates, I personally think Spencer wouldn’t be alive right now had you not been advocating for him so diligently all these many months.
Look at your first paragraph of this last post. Once again, you saved your boy’s life! You did that! The hospital staff should have known to check him after an MRI, but they were negligent, not you. I can absolutely understand the pressure you are under to be on point constantly because they are missing things that you are catching. This isn’t fair to you and I wish it was different.
Your dedication is beyond amazing. We tell you and staff has mentioned it. And you have been spot on time after time. With all the complications your son has, I guess there will be times that some things are left to slide while other lifesaving things are happening. Yes, this nerve situation is distressing. But Spencer is still Spencer. And that is to your credit. Please don’t let your exhaustion let you believe anything else.
Please remember that you are Spencer’s best advocate and that you are doing a fantastic job. And no one can perform miracles and magically make him whole again. His body has been through a lot, and I suppose there are some areas that are going to be different. But that isn’t due to your lack of care. Hugs.
And as a little side note: I had to eat puréed food for a time when I was in high school. My mom would just take what she was serving everyone else, purée some for me, and serve it just as she did for the rest of the table. Believe me, it does taste the same! She even puréed a homemade taco, shell and all, and I can attest that it was awesome. Of course, I am not trying to compare my short term situation to Spencer’s, but I want you to know that taste buds don’t care. He will be able to enjoy the same foods as before, unless he has dietary restrictions.
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Post by tkdmom on Jun 12, 2018 0:45:19 GMT
You are not to blame. As you said there were more pressing medical matters to deal with such as preserving his brain function and his life. You have been a wonderful advocate. If you are interested I have two cookbooks on preparing pureed food I can send you. I was doing this for my mother prior to her moving into assisted living.
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Post by sunnyd on Jun 12, 2018 6:34:51 GMT
I believe 100% that if it weren't for you, your Spencer wouldn't even be here. You've literally saved your boys life more than once while he was in a hospital being treated by medical professionals. You are not responsible for this in the least. The initial shock must be such a heavy burden but you two are fighters and will overcome this. I'm praying for you both & sending hugs your way.
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valincal
Drama Llama
Southern Alberta
Posts: 5,637
Jun 27, 2014 2:21:22 GMT
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Post by valincal on Jun 12, 2018 6:44:06 GMT
Aww, sorry to hear your update. Poor guy! Please don’t beat yourself up! This is not your fault in any way! You’re the greatest mom and advocate Spencer could ever have. Big hugs.
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uksue
Pearl Clutcher
Posts: 2,500
Location: London
Jun 25, 2014 22:33:20 GMT
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Post by uksue on Jun 12, 2018 7:42:11 GMT
I'm so sorry - liftimg your fsmily in prayer .
I think as parents - as a mum - we are hard-wired to feel guilty . My youngest is currently feeling the ramifications of things that weren't completed for him when he was younger ( special needs ASD) and now at 16 we are finding it impossible to put that right.
We can't go back - we can only do our utmost best to support our children as well as we can going forwards x
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