mamasbabygirl Posted April 15, 2006 Share Posted April 15, 2006 What a long exhasuting last 30 hours we've had. On Firday morning, I got a call that mom had not awakened all night to go potty, which is beyond unusual for her. She usually goes every half hour with the lasix. I got there immediately to find her unarrousabe with 103 fever. We called an ambulance. We got to the ER and waited while they did the following tests: UA lumbar puncture to check for "meningitis" and as I called them out on cancer cells (thanks LCSC) tons of bloodwork chest xray head CT scan We had family coming in and out and while I was outside, mom had a seizure. My very meek aunt was with her and she was quite shaken by the time SF and I got back in there. It lasted for 15 minutes! Her longest seizure ever was 4 minutes. So they gave 4 shots of ativan and that pretty much kept her knocked out until we got her into a room last night. Mom's BF Hazel and I stayed the night with her. She woke up a few times, despite our efforts to arouse her. While awake, mom stares so deeply into your eyes it is like looking into your soul. She has done it with my aunt, Hazel , my uncle and me. She is unable to speak but has tried a few times. I kept asking the nurse why she did not have an IV since she had a UTI and was not able to drink on her own. Her nurse responded "It did not come with the orders from the ER and her Dr. will be in later", probably about 4 times this happened. This went on until about noon. Dr. still was not there, so i asked the nurse again, same response. THAT WAS ENOUGH! I told the nurse she needed to call the Dr. right away to see if mom needed fluids. I became quite hysterical when I found out that she had also not had any pain meds (probably explains her holding her head the few times she did wake up). Mom then starts having another seizure, it was bad, so damn scary. Her face twitched for 25 minutes or so and there were gurgling sounds and spit. I asked for ativan and was told "We are waiting on a call from the Dr." I was a mess. How could this happen? About this time, the nurses decided it was a good time to give mom Tylenol suppository. Yep, while she is having this seizure, they flip her over and shove it. I am not exaggerating. It was terrible. I was crying hysterically when my uncle suggested we call the Dr. What a grand idea. He called back within 10 minutes apologizing his *ss off. Apparently the ER did not send all of the orders, but he did lie some of the responsibility on the nurses for not recogizing the mishap or at least more appropriately responding to our concerns. I apologized for acting like a crazy person, to which he responded, "You are not crazy. It shows that you are a loving daughter." He will be there this afternoon so my goal is to get a shower and get back to ask some questions like, what the test results and are and is this just a UTI gone really bad or is "this it"? Fever has not broken. In between the long more apparent seizures, she is having focal seizures at all different parts of her body. Can't speak, just stares when woke up a few times About 1/2 bag urine for the last 2 days Did wake up to have me give a few strawfuls of water Mind you, she has not had a seizure since pre-surgery. ER thinks there is a new tumor at the "cerbral padunkel" area of the brain, but that was from a CT scan. I am sure her doc will order an MRI, which they won't do until Monday. What do you think? Please don't be shy or afraid of what others may say to your response. If this is it, I want her to be as comfortable as possible. My love and gratitude, Quote Link to comment Share on other sites More sharing options...
Linda661 Posted April 15, 2006 Share Posted April 15, 2006 OH MY GOD!!! ((((Lori)))) Hugs...... I'll be honest that much of your mom's behavior (the staring, the fever, the long bouts before arousing) is similar to what my dad exhibited within 2-3 days before he passed (dad didn't have the major seizures...small ones though). Now girl, let's not go off the edge here, your mom has gone through alot with her surgery stuff lately, but it's very possible. What's the "official word" on kidney function? The urine output looks to me like they might be shutting down (another possible clue that it's looking not good), but your mom wasn't getting the fluids she needed either from what you said. The gurgling you describe may have been from the seizures......how is her breathing? Does she sound generally like fluids are gurgling around? If she does, I think you've got to go for the comfort, sweetie.....I'm so, so, sorry and let's hope you have a different story here shortly. Praying that I am about to look like a fool with this post and that everything turns around just fine... Linda Quote Link to comment Share on other sites More sharing options...
Ry Posted April 15, 2006 Share Posted April 15, 2006 Lori-- Seizures that long are extremely uncommon and I would be so worried that she may not have gotten enough breaths in during them. Long seizures like that can be so dangerous. She should have an order for valium or a diastat (not sure I spelled that correctly) suppository for the seizures. Both are good meds for stopping them. I hope you get some answers soon as to what is going on with your mom. I'll be thinking about you both. Rochelle Quote Link to comment Share on other sites More sharing options...
michelepal Posted April 15, 2006 Share Posted April 15, 2006 OMG! I hate this freakin disease so much.. I'm am so sorry, I will pray for your Mom it so scary how thing can go from being OK to bad within a day.. Try to stay Strong for yourself its such a hard time.. ((((HUGS))) Love, Michele Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 15, 2006 Share Posted April 15, 2006 Oh, Lori, I don't know if "this is it", but I do know this is scary and I can tell you are stressed to the max. One of the hardest things for me during my various family members' illnesses was when they couldn't talk to me. Hang in there as best you can and do a lot of deep breathing and relax your shoulders. You can't stay tense if you relax your shoulders and keep them relaxed. Whether this is it or not, she needs to be comfortable. My prayer is for comfort and calm during this crisis for your mom, for you, and for all your family and your mom's friends. Lori, did you and your mom ever sing songs together, especially silly songs? If so, sing them to her and don't worry what anybody nearby thinks. My mom always loved the song, "Do Lord, oh do Lord, oh do you remember me? Oh, Lordie, do Lord, oh do Lord, oh do you remember me? ....." She would sing that and clap her hands and be so happy. When she was very ill and not talking or responding, we would sing that - cheerfully - and many times she would move her head to the beat or tap her fingers on the bed. At one time when mom was in the hospital, my sister and brother and me were all three singing it and two nurses and the cleaning lady came in and sang with us, clapping their hands and everything! It was really cool to see mom respond a little. Try it! If she responds even a little, you will feel a lot better. Love, Peggy Quote Link to comment Share on other sites More sharing options...
shineladysue Posted April 15, 2006 Share Posted April 15, 2006 Lori, "Is this it?" I don't know. It sounds very scary , but it sounds like you are doing everything you can. You are such a wonderful daughter,Lori. I am praying that God be with you to give your Mom's doctor's the wisdom and your family the strength to carry you through this. Love, Sue Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted April 15, 2006 Share Posted April 15, 2006 Lori, Your poor mom. Poor YOU! This has been such a long road and you have handled yourself so well. I have admired your courage throughout my stay on this site and related to a LOT of what you've gone through. I also think it does sound like the kidneys are shutting down. This happened to my grandpa. Those seizures--how scary. I commend you for making the demands you did to make sure your mom is as comfortable as possible. That is inexcusable. Let's hope it NEVER happens again. Lots of prayers coming your way for your mom and for you. I would imagine it has been a LONG time since you've taken care of yourself, from what I've seen in your posts. You are a fabulous daughter. Never forget that. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 15, 2006 Share Posted April 15, 2006 Oh Lori, This has been such a long, exhausting road for you. I do not know what is going with your mom but it does not sound good. I just want you to know that I am praying for strength to be sent to you and a miracle for your mom. If the man upstairs wants her that you will have to accept that. I just pray she is comfortable and pain free and they can get her seisures under control. My heart breaks for you, I hope you can give us better news. You are amazing and I admire you so much for the way you handle things. Maryanne Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 15, 2006 Share Posted April 15, 2006 Prayers for you and your mom. Don Quote Link to comment Share on other sites More sharing options...
terriep Posted April 15, 2006 Share Posted April 15, 2006 I am praying for you both as well...... Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 15, 2006 Share Posted April 15, 2006 Lori, Prayers for strength for you and your mother, they are needed and they are there. Your poor Mom has all that can go wrong happening to her, she should be comfortable by now and without pain with the medication needed. You are the best daughter for her, hoping that all you did today brings results that are good. Lots of love Jackie Quote Link to comment Share on other sites More sharing options...
Don M Posted April 15, 2006 Share Posted April 15, 2006 Hi Lori: no one knows for sure, but since you asked, I think the end may be near. I don't know, maybe I am not supposed to say that here. My brother and a friend from work both had lc and had siezures near the end. They both finally died after a siezure. If it were me, I would be going all out to make sure your mom has the comfort drugs. Try to connect with her as much as you can. It is hard to know when to quit fighting. For me, I will draw the line when and or if I reach a threshhold in terms of quality of life. You and your mom have my prayers. Don M Quote Link to comment Share on other sites More sharing options...
ma's kid Posted April 15, 2006 Share Posted April 15, 2006 Oh, Lori...lighting a candle and saying lots of prayers for you and your mom. Blessings and love, Libby Quote Link to comment Share on other sites More sharing options...
adela Posted April 15, 2006 Share Posted April 15, 2006 Could be towards the end. Just try to make her comfortable and know you have been there for your mother. You will have strength for what ever comes your way. Take care of yourself. Adela Quote Link to comment Share on other sites More sharing options...
dchurchi Posted April 15, 2006 Share Posted April 15, 2006 Lori, I have no answers for you. However, I continue to admire the strength you have in taking care of your mom. You are a wonderful daughter. I will keep you and your mom in my prayers Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted April 15, 2006 Share Posted April 15, 2006 Dearest Lori. You and your Mom have both had your share of ups and downs. I read all of your posts. I just wish I had answers to help you through. But, I don't. I just feel so helpless. I don't know if this is the end for your Mom. If it is, God bless her and give her and all of you comfort. On the other hand, if someone can have another life after being so sick, it would be your Mom. She has shown so much strength in the past when the odds have seemed so stacked against her. You can tell that I just don't know, Lori. I don't have the experience to help you. I can offer my care, my love, my concern, my hope and prayers for her and you. You are the best daughter ever. The absolute best. lovingly, Cindi o'h Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted April 15, 2006 Share Posted April 15, 2006 Lori, I'm sorry about your mom. I don't know anything about the seizures. Prayers going up for a miracle of healing for her. You continue to be a great advocate for your mom. Keep fighting for her. Take care. Quote Link to comment Share on other sites More sharing options...
RandyW Posted April 16, 2006 Share Posted April 16, 2006 The only symptom that matches is the Gurgling. That was how the nurses on the Floor knew Deb was breathing. They walked by and did not hear anyhting. By the time they had noticed it, She had passed and they could get no vitals. Will Say prayers on this holiday weekend for you and your family. Going to a sunrise tomorrow morning at cemetary and taking flowers.Much love and Joy to you this holiday. Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted April 16, 2006 Share Posted April 16, 2006 Dear Lori, I pray that the Doctor is able to make your Mom comfortable and find some answers for you and your family. If "this is it" please take comfort in knowing that your Mom could not have asked for a more loving and supportive daughter. I pray for strength and peace for you. Denise Quote Link to comment Share on other sites More sharing options...
karenl Posted April 16, 2006 Share Posted April 16, 2006 Dear Lori I understand only too well what you are going through. The level of care your Mom is receiving sounds similar to that which we encountered when Mum was admitted to a palliative facility for a couple of weeks. Pretty appalling, and makes an already heartbreaking situation that much more difficult. I wish I had some answers that might help you. All I can do is echo what has been said before - be there as much as you can, and know that you have done, and are doing, as much as is humanly possible. Talk to your Mom, and reassure her that you will be with her as long as she needs you. Touch her and hold her hand. Insist that her pain is kept under control at all times. I think it must be very frightening for someone who is non-communicative to be in pain and unable to tell someone (I think you are right about when she holds her head - that is how we knew that Mum was in pain when she was awake). I hope that an explanation for your Mom's condition can be found and something done to restore her to you. I wish strength and courage for you both. Love, Karen Quote Link to comment Share on other sites More sharing options...
jduenges Posted April 16, 2006 Share Posted April 16, 2006 Lori, It is so awful to watch someone you love go through so much. Your Mom is lucky to have you there for her. Most importantly, I would make sure that she is not in pain and she is comfortable. Jackie Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted April 16, 2006 Share Posted April 16, 2006 I'm very sorry Lori for everything your mom and you are going through. Prayers for the both of you. Rich Quote Link to comment Share on other sites More sharing options...
trish2418 Posted April 17, 2006 Share Posted April 17, 2006 Lori So sorry for all that your mom and your entire family are going through. My prayers are with you. Trish Quote Link to comment Share on other sites More sharing options...
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