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Post by kkrenn on Jan 8, 2018 20:02:59 GMT
I hope you are settling in to the new accommodations and things are still on track for Spencer's surgery today! Prayers for you both!
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Post by canadianscrappergirl on Jan 9, 2018 3:37:24 GMT
UPDATE Hi everyone!
I'm so happy to be living in the house now! Yesterday I took some time to actually cook, it was so nice to cook and awesome to eat some home cooked food!
I made taco salad and a pot of beef barley mushroom soup.
When I was telling a friend I started crying I was so emotional about having a good meal.
Staying here has been a god send I'm so so thankful for this house!
The surgery scheduled for tomorrow has been cancelled for the time being.
His doctor called me on Friday. He said that he feels if he puts a shunt in at this time it will not last and will block.
He said Spencer has low pressure hydrocephalus. It's a rare type of hydrocephalus where he has negative intracranial pressure but extra large ventricles. He said he's only seen 5 or 6 patients with this. His exterior ventrical drain was at -10. He said for his shunt to work it has to be between -2 and +2. He has to be able to maintain a setting within that range for the surgery to be successful.
I honestly wasn't surprised when I saw them dropping the drain lower and lower and yet him not really improving neurologically. I kept thinking this doesn't look good for a successful surgery.
Spencer was really disappointed when I told him.
The doctor had the drain changed to -8. He said each change will be for at least 3 days as it will take a few days to see if Spencer tolerates it. Today they changed it to -6. Tomorrow they will do a CT to check his ventricle size.
The doctor said he hopes by the second OR day he has in January on the 26th with a cardiologist anesthesiologist that Spencer will be ready for the surgery.
If not then it will be in February.
With this delay and with Spencer's regress physically I think we are probably looking at early to mid April before he's home.
On Friday afternoon when I got there he was laying in bed awake and at some point had a bloody nose. He had dried blood all over his nose and cheek. It had ran down behind his neck and all over his fingers. I was a bit ticked. When I walked by his garbage to go to tell his nurse I noticed a glove wrapper in the trash can. It looked like the same type of wrapper from some latex gloves a doctor tried to use when he had to flush his drain on new years day when it stopped draining.
I dug out the wrapper and sure enough they were latex gloves. I took the wrapper to the desk and said how many ways and times do I have to say Spencer has a latex allergy! They deduced someone may have used them to empty his CSF drainage bag. They said he wouldn't have had direct contact with them. I said I don't give a crap I don't want any latex in his room period!!
I said this is the 2nd time in less then a week he's either been exposed or almost exposed. What goes on when I'm not here!?!?!
He has had a ton of absolutely fantastic nurses who have gone above and beyond and I don't think it was done with malice but geez it does get frustrating ugh.
They've posted more signs and better signs.
Spencer's skin has really broke out with acne it looks so painful. I am unsure of what to buy to help clear it up. Any suggestions?
We're having trouble with keeping his mouth clean. Had to really scrub his tongue yesterday. It's constantly coated. His lips are always extremely dry keeping on top of that is difficult.
He still spends a large part of his day sleeping but when he is awake he's fairly alert but still not talking. He did enjoy watching the flames game the other night.
Now it's just a wait and see on how well he tolerates the changes with his drain.
On Thursday a friend of the family stopped by to see Spencer. She told me her mom was in the same hospital for the past few days she had fallen down her stairs and laid there for 2 days before someone found her. They airlifted her here from where she lives. She has a closed head brain bleed. So sad she's such a lovely lady and great family. They haven't been given a good prognosis but she said her mom has rallied a bit over the weekend.
I also read on FB about someone who grew up where we live who died suddenly of a brain aneurysm at age 42. His family donated his organs.
It astounds me how lives can change so quickly and dramatically in a matter of minutes!
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AmandaA
Pearl Clutcher
Posts: 3,502
Aug 28, 2015 22:31:17 GMT
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Post by AmandaA on Jan 9, 2018 4:02:39 GMT
Sorry to hear you don't have a better update on how Spencer is doing, but so very happy for you to see you in a better place. Hope the new accommodations continue to give you the boost you need to keep up the good fight for Spencer!
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Post by kels99 on Jan 9, 2018 4:28:17 GMT
I'm just getting caught up and am so glad to see that you have a place to stay!
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Post by kkrenn on Jan 9, 2018 5:55:33 GMT
I am so happy you have had a touch of normal lately and were able to cook. Sometimes when I've had really horrible pain days just being able to put my own bra on by myself is extremely satisfying so I understand the emotion you felt when you cried.
I hope the nurses and staff pay better attention to the new signs and that the changes the doc is making will help get him to his surgery date.
Hugs and prayers!
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Post by garagesaler on Jan 9, 2018 10:55:45 GMT
So glad you are able to be in the house, and are able to cook for yourself while you are staying there. That must be so wonderful after all of the hospital food! Praying for Spencer and you.
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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 Jan 9, 2018 13:27:48 GMT
Glad to hear that you have a place to stay. Hugs and continued prayers for you and Spencer.
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Post by garagesaler on Jan 13, 2018 21:34:56 GMT
Thinking of you and Spencer, and praying for you both.
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moodyblue
Drama Llama
Posts: 6,179
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Jan 13, 2018 21:48:11 GMT
I'm so glad you have a better place to stay now. That should be one huge stressor lifted. Your soup sounds delicious!
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Post by LavenderLayoutLady on Jan 14, 2018 1:10:28 GMT
Just checking in to let you know that you and Spencer are in my thoughts and prayers.
Hopefully, staying at a house, with real food, you've had a few moments to regroup and get a little rest (though I know it's only a drop in the bucket of what you really need).
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Sue
Pearl Clutcher
Posts: 3,234
Location: SE of Portland, Oregon
Jun 26, 2014 18:42:33 GMT
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Post by Sue on Jan 14, 2018 1:20:46 GMT
Hope Spencer is doing okay. Glad you've found a better place to stay. Still praying for Spencer and you.
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Post by canadianscrappergirl on Jan 14, 2018 1:47:30 GMT
UPDATE HI Everyone!
On Thursday they ended up doing the CT not Monday or Tuesday.
I had hoped the Dr would come around later that day to discuss it but he was unable to. On Friday night the charge nurse was able to speak with him and he said he was very pleased with how his ventricles were looking. He raised the drain to - 4 last night. They will do another CT on Monday or Tuesday. If it looks good they will raise it to -2.
Spencer does seem much more awake the past few days and today was able to say a few sentences! It was so great to hear his voice!
So several days ago they had removed a bunch of staples from the top of Spencer's head. I noticed that someone had also sniped a few sutures his Dr had used to tie down the drain catheter to stop it from moving. They insisted no one cut them.
Last night the resident I don't really care for said he was going to put in some more sutures. I stayed in the room to make sure it was done right.
He brings in the supplies and OMG what does he bring in but latex gloves seriously WTH!!
I said you can't use those. He says oh right sorry ugh really?!?!?
So right before he is going to do the sutures the charge nurse says did he answer your questions about the CT. At that point I was still waiting to hear the doctors read on it. I said no i prefer to talk to his Dr. I probably sounded like a bag but I'm done with residents.
I come in today and the sutures are gone again seriously WTF. I said to his nurse someone must be snipping these. I said they just resutured these yesterday. He's not pulling them and if it's the way they are handling him they need to be more careful!
Thankfully he didn't have any discomfort as they did the sutures yesterday but gosh it makes me cranky!
So a few days ago I was grabbing some water in the hallway and a family member I've gotten to know says you should come to my fitness class. I looked at her and said do I look like I do fitness classes. She says well it could be your new years resolution. Ugh I was thinking hmm is that dig about my weight. Yeah on top of being here I'll start exercising lol.
So this same family but different member was asking me how long I stay each day. I said I try to stay at least 8 hrs and that I was at first staying at least 12 hrs but I was getting exhausted. He says well you really have to be here all the time to catch stuff. I said well unlike your family who spells each other off thru out the day I'm here by myself all the time. Seriously some people just need to shut the heck up lol.
I was telling you about the friend whose mom was here in the same hospital. Several days ago she texted me and said they've had some really encouraging news and what she called a miracle. Am I awful for just wishing we'd get one ugh.
In one of her texts she was telling me her husband was bringing her a home cooked meal and doing her wash. She asked if mine came often I said no lol!
Tomorrow is my birthday ugh hate them lol. He usually comes on Sundays I'm going to skip coming here until the evening birthdays are sucky enough without dealing with all that. I think I might take in a movie. Told my oldest I was going to treat myself to The Keg I got a GC to it. He thinks it's sad i am celebrating it on my own. It is what it is.
I'm really encouraged by how Spencer has perked up the past few days! It is the best birthday gift I could ever get!!
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Post by cadoodlebug on Jan 14, 2018 3:48:42 GMT
Great update that Spencer is perking up a bit. Boo on whoever is snipping his sutures. You need a nanny-cam in his room!
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Post by ScrapsontheRocks on Jan 14, 2018 4:12:06 GMT
May your alone birthday ( no judgement, I know exactly what you mean) be peaceful and recharging. May Spencer be chatting more and more.
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Post by scrapmaven on Jan 14, 2018 4:33:33 GMT
A birthday alone, although sad is much better than a birthday w/your horrible stbx. I think a movie and dinner is a great idea. Also, why not take yourself to the mall and buy yourself a present? If anyone is entitled to celebrate her birthday it's you.
Also, we can celebrate your birthday on this thread. I wish you an early Happy Birthday. May this year start to turnaround for the better for Spencer and you. For now, may your day be fun and fulfilling as you try hard to enjoy a movie, dinner and I hope the mall.
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Post by newfcathy on Jan 14, 2018 4:37:04 GMT
Happy, happy birthday, 🎶🎉🎂🎉🎶
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Post by donna on Jan 14, 2018 5:13:00 GMT
Happy birthday!
I think you need to go see The Greatest Showman. You will leave the theatre with a smile on your face.
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RedSquirrelUK
Drama Llama
Posts: 6,744
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Jan 14, 2018 7:49:19 GMT
Happy birthday!
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Post by cawoman on Jan 14, 2018 8:26:31 GMT
Happy Birthday!! I hope you have a nice dinner and see an uplifting movie that makes you feel happy! xoxo
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Post by Lexica on Jan 14, 2018 10:12:58 GMT
Happy birthday!
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Post by gar on Jan 14, 2018 10:37:59 GMT
Happy birthday. I'm sure seeing Spencer being a little more chatty is a great present. I hope you manage to have a nice day
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Post by LavenderLayoutLady on Jan 14, 2018 12:07:07 GMT
Happy birthday ! 🎂
More than anyone else, you deserve to go see a movie, have a dinner, and have a moment of rest.
I'm glad to hear Spencer was able to speak a few sentences. Must've been great to hear his voice.
Sorry one hand doesn't know what the other one is doing at the hospital.
(((((Hugs)))). And prayers.
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Post by ss on Jan 14, 2018 12:29:20 GMT
Happy birthday! You so deserve dinner and a movie! Prayers continue.
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Deleted
Posts: 0
May 19, 2024 15:04:43 GMT
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Post by Deleted on Jan 14, 2018 16:29:53 GMT
So glad to hear that Spencer is showing signs of improvement and that the place you are staying at is going well, but dang that hospital is just begging for a lawsuit with those latex gloves!!! It's almost like you need a video camera in that room with Spencer! I hope you you can take this further up the chain so that they can establish better protocols. Seems like the glaring mistakes with the gloves and sutures are acts of negligence. With regards to the exercising, the person was likely throwing it out there as a suggestion to relieve mental and physical stress (ie from sitting tense in a chair all day) vs you needing to lose weight. If not, let us peas know and one of us will come and set that person straight! . I hope you have a wonderful birthday today. You deserve a WONDERFUL day!
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Post by scrapmaven on Jan 14, 2018 17:48:47 GMT
Happy Birthday. Hopefully, you're off waiting in line at the movie by now.
Can you just make a big note that states that he is allergic to latex and pin it to the wall or tape it to the glove boxes?
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Post by grammadee on Jan 14, 2018 18:00:06 GMT
Happy birthday! I hope you can have a relaxing meal and movie. Knowing Spencer has been making improvements lately may help you do that.
Try not to let other people--especially strangers--get under your skin. I suspect that family is dealing with their own dynamic and simply making random comments to you. The exercise class lady probably feels it really helps her to deal with the stress. Her invitation to you was prob just a way she thought she could share her positive experience in a negative place. And the guy is right: that staff needs to be held accountable. But he didn't factor in that you are trying to do this alone.
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Post by anniefb on Jan 14, 2018 18:59:14 GMT
Happy Birthday! Great to hear Spencer is showing signs of improvement.
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Post by LisaDV on Jan 14, 2018 19:07:47 GMT
Glad Spencer has some improvement and hope that continues. Maybe your miracle will come today on your birthday! Happy birthday!
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Deleted
Posts: 0
May 19, 2024 15:04:43 GMT
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Post by Deleted on Jan 14, 2018 19:31:06 GMT
At this point you are allowed to tell people screw off.
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Post by jenn on Jan 14, 2018 19:32:17 GMT
Happiest Birthday Wishes to You!!!
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