Hospital Updates During Alex and Landria’s Hospitalization

A diagram of the forces on the brain in a coup...

Day of Accident: December 5, 2011

I want to thank all of you for all the prayers, love and support shown during this tragic time. I wasn’t sure if I wanted to write anything on FB about this, but I decided it would be an easy way to update everyone. Landria is improving after having all her surgeries completed. Will start physical therapy tomorrow. Alex is showing signs of improvement, but is still in coma.  She has suffered from a Traumatic Brain Injury.  They will keep her sedated for several more days. It will be a slow process of trying to let her wake up toward the end of next week. Don’t know exactly what will happen… I have faith and hope that she will eventually be restored to health. I am so grateful for all the communities of people who are praying for the girls and our family. I pray for all our friends as well, as I know this has hit everyone really hard. My Dad, Robs’ mom and sister are her. Landria’s dad, wife and grandmother are here as well. Landria’s boyfriend was able to get an emergency flight to be here also. I have the most awesome friends in the entire world! Friends have been showing up and sitting with us just to offer support and love. Friends, who are not already showing up in this group are understanding and only stay for a few minutes. I don’t know if I worded that right? Anyway, My dad has been such a blessing, as he keeps everyone full of humor and laughmer at such at horrible time. Lots of tears and heartache, so it important to have a different kind of outlet as well. I am also grateful for the girls’ dads and their wives, who have been fantastic! We have a very long road ahead of us of recovery for both girls. Thanks again everyone. Will try to let you all know if anything changes.

December 10, 2011

“Landria got the stitches in her face out yesterday. Her face looks amazing. She is continuing to struggle with an incredible amount of pain. Not sure when she will be released. They said something about this coming week. I do not see how that is possible, but we shall see. Alex is still about the same. Her vital signs are good. Brain pressure is good… Not much to report. The CT scan doesn’t show anything new. Monday is still the day they are planning to decrease her medicine, which is keeping her sedated. Rylan got the stiches out of his face. He is staying with his paternal grandfather until his Dad arrives on Tuesday. I am going to arrange for him to come visit us here to see his mom and all of us. I wanted to wait until Landria was doing a little better, so he would not be so scared. He is such a blessing in my life and I am so grateful he wasn’t seriously injured.

Hope is busily crocheting for everyone. I think it helps her cope with all this. Eli wants to eat every 5 minutes in the cafeteria. Grateful for everyones’ support. I am still having my moments of breaking down..but you know me, I just keep marching on and doing what needs to be done. My supervisor at work came yesterday and brought a collection from my work that they gathered for the girls. I was so moved by that..I really appreciate all the support there as well. Thank you to all my co-workers! Post more in a few days.

December 12, 2011

They did not reduce Alex’s medication today as orginially planned. Her pressure went up again on Sunday, so the neurosurgeon decided they needed to give her more time. I tell her how much I love her and she needs to get better so we can take our trip to Boston. I just pray she knows she isn’t alone. I am very grateful the awesome care she is receiving. My Dad and Rob’s mom and sister are all leaving tomorrow. It will be sad to see them go. I have really appreciated my Dad being here durning such a difficult time. I was able to get ahold of my brother Ted in Baltimore. My uncle came to the hospital yesterday. We have continued to have many friends come to support all of us. Landria is doing well. Rylan came to the hospital today to see his mom. He looks great and seems to be doing well emotionally. He may be going with his dad to N.Dakota for a while, not sure though. Post more later.

December 14, 2014

They began decreasing Alex’s medication yesterday, so today she is down to 1mg. Her pressure is maintaining, and I got to see her cough!! Her brain is sending the signal to her body, as the nurse was suctioning out her airway. This is a good sign..I am more hopeful than ever. I know it will be a long journey, but I pray she will come back to us. I miss her so much. I told her if she wakes up, I will buy her the I-Pod touch she asked for! A little bribery just might work. I wish it were that simple. Hope went home early, as she was stressed and tired. Eli went to youth group, as he needed a break as well. I believe Landria will be going to Portland to a rehab facility. She is doing really well with all her PT, even though it is so very painful. Thankfully, she is very tough. She hasn’t lost any of her Moxie, that’s for sure! 🙂
Thank God for my sponsor, friends and family. Thank you everyone! More later……..

December 20, 2011

I am sorry I haven’t posted an update for a few days. Landria is in Portland at a rehab facility. They are planning to let her go home next Wed. I guess they think she is doing really well. I think it is way too soon. We have to figure out a plan of who and where she will be taken care of. I thought we had a little more time. I am grateful she is healing so quickly.
Alex is still in a coma. She is running a high fever off and on. She had a bad day on Sunday. She was doing what they call storming. Yesterday she was peaceful with no fever. I got a call at 3AM that her fever was back up. Lots of fear and despair going on inside me. I keep praying constantly. I have been singing to her, which she would laugh at me for. Oh well, maybe one of these days she will wake up and tell me to shut the hell up. That would be welcomed! Hope and Eli are hanging in there. I feel like we are all in a bad movie. Don’t know what to do about work. Thank you to all the women who showed up on Sunday.  I have found lots of hiding places in the hospital. 🙂
December 22, 2012
‘They took the Ventricular drain out of Alex’s head. She did really well with that. Today they took out the brain pressure monitor. Her brain pressure has stayed down for awhile now, so the doc decided it was best to get it out. She is still having episodes of what some call storming. The trauma doctor said what she is doing isn’t really storming. It is scary to watch, but can be part of the process. It will still be awhile before we know what will happen next. We had a meeting with the Neurosurgeon and Trauma doc yesterday. They said because it so early in the process, she is young and the fact that Alex hasn’t had any major complications are all in her favor. It is still very realistic to have a good outcome. If she is still at this same place at 6-8 weeks, then it will be bad. I was able to braid her hair. She will be so mad about her shaved spots. Once it grows out a little, we can put extensions in to cover them. She is still so beautiful. I just don’t want her to be upset more than she will be anyway.
Hope is on her way up to see Landria. She is having a lot of pain in her pelvis. She is worried about where she will be when she gets out. I think the plan is for her to stay at my house for the first leg of her journey. I wish I was closer to her, but right now I am not going any farther than 5 minutes away from Good Sam. hosp. II don’t even know if this post makes any sense. Will post more later…
I have been singing Silent Night to Alex every night..it is the only song I can remember the words to. No time for embarrassment! I am a lousy singer.
December 23, 2012
Well, Alex doesn’t want to be touched right now. Every time I touch her, she twists her arms and her heart rate goes up. She had one of her episodes last night. It is so frustrating. They described this as just chasing the symptoms. Her electrolites and blood sugar are out of wack, so trying to get all of that leveled out on a constant basis. Her temp goes sky high and heart rate goes too high during these episodes. I have to limit the time I am in there..just too hard to watch. I am powerless over anything I can do to help her. I just do what I can to keep her wash cloths cold and reassure her that we love her and that the nurses and doctors are taking good care of her. Rob is still sleeping in her room every night. I worry he will collapse with exhaustion. Eli has been staying with me at Landria’s place. Hope is spending less time at the hospital..too much for her. Landria will be released soon. Have to get the spare room all ready for her at my house. Her boyfriend will be here for the initial part of her release. Eventually I think she would like to move up to Portland by her father. I just want her to be safe and happy. I believe she will have a home health nurse a few times a week. One day at a time..it is hard to project too far into the future. We will spend Christmas here at the hospital. The most important thing is to be close by in case something happens. I know it is hard on all the other kids. I am just babbling now. It helps to write to get all this out of my head. Merry Christmas everyone. More later….
December 24, 2011
Alex is having a better day today. The doctor switched her meds around, so I think it has made a difference. She doesn’t appear to be storming today. The are putting a Pic line in versus moving her central line again. Her nurse today used to work at Doernbeckers Childrens Hospital. It helps us to feel more at ease when the nurse that is assigned to her is caring and competent. Almost all of the nurses she has had have been great. I can’t say that about her nurse yesterday. I realize Alex’s case is very complex, but her Dad and I are very protective and want the very best care she can get. Alex’s stepmom has been very helpful with everything. I am very grateful for her as well. Haven’t talked to Landria for a couple of days. She is going to spend Christimas Eve and Christmas day with her boyfriend, dad and his family. She has to be back by 8PM each night. I think it will give them a clear picture with how ready she is to leave on Wed. I feel torn about not being there for her during this time. If the girls were in opposite positions, I would make the same choice to stay at the hospital. I talked to my Grandson, Rylan this morning. He is so cute! He is talking so well. He gave me smoochies over the phone. Hope baked some goodies to bring to the hospital and is doing some shopping for everyone. Eli is hanging out at his Dads’ for most of the day today.
I want to thank all my coworkers for the fund raiser they did to raise money to help with expenses due to my time off work. A special and huge thank you to Tencha and her family for making the food for the fund raiser. I also want to thank the people in the Dept. who put up the money for the supplies needed to make the food. I so appreciate the love and concern you have all displayed by doing this. Thank you Lisa and Tencha for coming to the hospital to deliver my Secret Santa gift and the proceeds from the fundraiser. I have so underestimated so many people in my life. This tragedy has opened my eyes to so many things. I appreciate so much the concern, prayers and support everyone from my bio. family, recovery family, work family, long time and short time friends. Merry Christmas to everyone. I pray next year we can have a huge celebration for us all to be with Alex. I know Landria and Rylan will be there..I just pray Alex will be too.”
December 25, 2011

“Merry Christmas to everyone. Hope and Jeanne’ made food and brought it to the hospital. We had a little section of the cafeteria with all our family and food. It has been very sad day for me, as it is not the same without everyone here. Alex had a peaceful day yesterday, but a rough night and morning earlier today. She is peaceful right now, so it looks like they are able to keep the storm sessions a bit shorter and get them under control. Some of the nurses check her temp every 30 minutes, so I have requested that this be a standard practice with her. Baby steps of progress is I guess what they meant by this. It will be three weeks Mon morning. It feels like three years. Hope and all their stepsisters are here, along with Kelliann, Alex’s best friend. Kelliann and Leanya are working on a book of all the facebook messages for Alex for when she wakes up.

My niece is here, as she had her baby two nights ago. Lots of babies born the past week. They are doing well. The nurses brought in a CD player and started playing some of her music. This seems to bring her heart rate down, unless she is storming of course. I am so exhausted that I fell asleep in the ER waiting room. I must say, they need to make the couches longer! I guess everyone would be laying down and going to sleep though. There is a waiting room on the third floor that has a long couch and even has Christmas tree, but someone took it over and had Basketball on…I was so mad! On Christmas!? Oh well, I have to not be so selfish with the good spots here. People in the hospital are very kind, even housekeeping staff is asking me about Alex.. I am grateful for God and the faith that everyone continues to help instill in me that this will all be over someday and she will pull though. Thank you to all of you. Even the FB notes and comments help. I def. couldn’t do this on my own. Hopee has been holding the fort down at home. A friend has been staying there to help out so she isn’t alone. Landria went to church last night and to her Dads’ house today. I think she did okay..I lectured her about over doing it…but you know how that probably went in one ear and out the other. Oh well. More later….”
December 26, 2012

“They are talking about possibly keeping Landria longer to give her a chance to work on stairs. I hope they give her longer to get stronger and heal, with benefit of round the clock care. She is happy with her nurses and doctors. I am very grateful for her safety and Dad’s family for being there to pick up the pieces I cannot be involved with right now. It is so hard to be torn between two of my girls. I know Landria is on a good, positive road to recovery. Rylan is safe with his Dad in North Dakota. This gives me a chance to be here and fight the fight with Alex. It is amazing how both of the girls’ dads and their wives have been through all of this.

I really have gotten to know Rob’s wife, Jeanne’ more and really like her as a person. I am very grateful for Rob and Jeanne’s presence through this tragedy.
Hope is back to crocheting..now it is a Ducks blanket for Eli. She is amazing. She is also working on Landria’s blanket, which is beautiful. Alex had a good night. I am going up to see her now, so I will post more later. Thank you to everyone for continuing to pray for both the girls. More later…”
December 27, 2011
Well, today has been a difficult day. We had a conference with the Trauma Surgeon this morning. The CT didn’t show anything worse, with some reduction in swelling. We had an on-call Neurosurgeon come in and was rather crass and not so compassionate. He then went in to examine Alex, and was an ass. He shook her legs without even obviously reading her chart..she has a fractured sacrum, pubic bone and an additional anterior pelvic fracture. I wanted to punch his lights out! He was very rough and acted like a complete brute. Alex had just received a dose of Morphine (Good thing!) so it was all pointless anyway. Rob let them know that doctor is not allowed in her room anymore. She had a storm this morning, but it didn’t not last as long. She has been resting fairly peaceful for the rest of the day, no thanks to him. We requested a consult with OHSU to make sure the team here is doing everything humanly possible for our Alex. They want an MRI so they can take a look. We were told all this can do at this point is give us more prognostic information, but the Trauma doc is willing to follow their recommendation. I am almost afraid of that kind of information. Occupational therapy is going to start working with her as well as Physical therapy, which has already been happening. We are also getting a consult from Orthopedist at Legacy Emanuel. She needs to be cleared with Ortho. before they can turn her on her other side, PT or move her legs to place a different kind of catheter to monitor her temp. automatically. She will have to eventually to go there to have the sacrum fixed, as they do not do that here in Corvallis. Rob mentioned that he would like the option of just having her transferred there at that point. We aren’t there yet, but it is something to be talking about. Alex has to be more stable before would be less risky to medically transport her to Portland.
Well, today has been a difficult day. We had a conference with the Trauma Surgeon this morning. The CT didn’t show anything worse, with some reduction in swelling. We had an oncall Neurosurgeon come in and was rather crass and not so compassionate. He then went in to examine Alex, and was an ass. He shook her legs without even obviously reading her chart..she has a fractured sacrum, pubic bone and an additonal anterior pelvic fracture. I wanted to punch his lights out! He was very rough and acted like a complete brute. Alex had just received a dose of Morphine (Good thing!) so it was all pointless anyway. Rob let them know that doctor is not allowed in her room anymore. She had a storm this morning, but it didn’t not last as long. She has been resting fairly peaceful for the rest of the day, no thanks to him. We requested a consult with OHSU to make sure the team here is doing everything humanly possible for our Alex. They want an MRI so they can take a look. We were told all this can do at this point is give us more prognostic information, but the Trauma doc is willing to follow their reccomendation. I am almost afraid of that kind of information. Occupational therapy is going to start working with her as well as Physical therapy, which has already been happening. We are also getting a consult from Ortho. at Legacy Emanuel. She needs to be cleared with Ortho. before they can turn her on her other side, PT or move her legs to place a different kind of catheter to monitor her temp. automatically. She will have to eventually to go there to have the sacrum fixed, as they do not do that here in Corvallis. Rob mentioned that he would like the option of just having her transferred there at that point. We aren’t there yet, but it is something to be talking about. Alex has to be more stable before would be less risky to medically transport her to Portland.
Landria is staying in the Rehab. facility until Friday to give her a chance to work on stairs for a few more days. All the therapists gave her a glowing report. They said she is pretty amazing and has worked very hard. After she is released on Friday, she will stay in Portland. She and her Dad have come up with a plan for her to do her outpatient rehab. up there. She would like to make more of a permanent move up there, but for now, she plans to see how it goes. I know she is scared, as I cannot be there to help, and the plan is not very structured as far who will be taking care of her. I am going to suggest making a schedule of who takes what shift to be there so she isn’t ever alone. Her boyfriend has been very helpful and supportive with taking care of her, but he has to leave to go back to work the week after New Years. They have allowed him to stay there with her, which is not usually the case. She is very understanding about why I am here with Alex. I know that doesn’t make it any easier though. I continue to pray for both of the girls. I have never pleaded with God so much in my whole life. More later…
December 31, 2012

“Landria made it down here. She is staying here for a couple days. She is coming to hospital to see Alex. I hope it goes okay. Landria is very strong, so we were able to get her up the stairs to her apartment. I stayed at the hospital with Alex last night. It was good to give Rob a break from here. I know it is important to do that for short periods of time.

Alex is having an up and down day today. She opened one eye for the second day in a row. Not what it means at this point. The nurse was very encouraging about it. She said Alex is moving forward into the rehab phase, so Rob and I will start being more involved. I got to brush her teeth, which she detests! She had this really sour puss look on her face. Not used to seeing her look like that! I keep talking to her and repeating how much we love her and that she is safe. I also told her what happened and why she is here. I am going up to help wash her hair, as they had to put the EEG electrodes back on her head, so now it is full of paste again. I am very grateful and happy to see some different respones from her. It will be a very long process..like a couple years of rehab. That is an estimated time line that nurse, who worked at Doernbechers Childrens Hospital for years. We are so blessed to have some of the nurses and her Trauma doc. They all are working very hard to do everything they can do to help her.
Landria will head back up to Portland tomorrow. It has been good to see her and spend a little bit of time together. Her stepmother has told her she will bring her down to visit. I wish they lived closer to here.
Happy New Years Everyone. Be safe.
More later…”
Jan. 1, 2012
“Day #3 that Alex opened one eye. It takes a lot out her, so am trying to find the balance with her PT and the storms she continues to have. Landria is heading back to Portland today. She over did it with going up the stairs to get into her apartment, so lots of pain in her knee. I am still amazed with the level of independence she has at this point. Not much else to report right now…”
Jan. 3, 2012
“I hate the meetings with the doctors. They are not very optimistic at this point. The eye opening may not mean anything, as most coma patients do end up opening their eyes, but remain uncousious. I don’t mean to throw cold water on everyone’s hope. I am feeling very discouraged, which is what happens every time we have one of these meetings. It is still early, so we are absolutely not giving up hope. I have heard too many miraculous stories to not believe there is hope. It is just very taxing to hear their clinical opinions based on their experience. I do not know how to get though this right now. I guess just one day at a time, maybe 5 minutes at a time. More later…”
“Thank you for all the love, prayers and encouraging words. It really helps during my darkest days. My heart is full of sadness and grief, but I am not giving up. The doctors did agree to try a different medication to help with the storming. Not sure what kind of results we will get, but we all felt it was worth a try. I am becoming a pro at cooling her down with ice packs and the fan. Poor baby looks like a mummy at certain times of the day, but it seems effective with getting her temp. down. They are not sure Tylenol works all the time because it is caused by a Neurological issue, not an infection. Some nurses think that it does and some don’t. Alex had a new nurse last night who was really anal..he woke poor Rob up every two hours when he wanted to turn her or “anything” and told him to go out of the room. He will be informed not to ever do that again. Landria came down again today. She went and saw Alex for the second time. It is especially hard when you are not used to seeing her. I think she handled it pretty well. Landria is having a lot problems with her knee, so going back to the doctor tomorrow to see what can be done. I don’t know if the steel rod is putting pressure on it, or if it just the swelling from using it more than she had been.
I went and got my hair done and slept through it all. I told the girl I didn’t care what color or how she cut it. Good thing she didn’t do anything too drastic. I almost fell out of the chair. Thank you to the Hams, Cullisons, Sprenkles, Greys and Franklins for the Gift Certificate. I really appreciate not looking so scary. Although, at this point, I really don’t care too much about my appearance. I felt a little guilty having it done, but went ahead anyway.
More later…”
Jan. 4, 2012
 

“Alex has had an okay day today. Only had to ice her a couple of times today. Went to Albany for a quick appointment and then picked up Hope.  My cousin (2nd) came over and brought my Great Uncle with him. It was good to see them. Thank you all for the gift card! Two friends came by to visit with me for awhile. I am thankful for the friends that I have.

I started reading to Alex from the Chicken Soup for Teenage soul books. I don’t know what she say if she could..maybe, “that is really corny mom?” Possibly, but I thought it was safe reading material..I wouldn’t want to put anything weird in her head. I have heard stories of people in comas that had nighmares and couldn’t tell if they were real. I hope that isn’t happening to her. I keep repeating
the same things to her..like, “you are safe and we won’t let anyone hurt you”, etc.
Last night Rob and Jeanne’s home group from church came to hospital..over 50 people. They all prayed for Alex. It was an uplifting, encouraging experience. I am grateful for all the prayers that are being said for her all over the world. I hope I am not depressing everyone with my posts. I saw a therapist today, and the one thing this situation has been teaching me is that my life has really been pretty good, and I didn’t realize it until this happened. It is so easy to get depressed or unhappy when things just seem hard, but when it really hits the fan, then it puts it into perspective. I hope I never have to be reminded of this again.
Landria has to have an MRI done on her knee. They are suspecting it was actually damaged during the accident. I wish they would have known about it sooner. I am not sure when this will take place. Hopefully sooner than later.”
Jan. 5, 2012

Today has been a constant storm. I started off this morning getting reallly upset and angry at one of Alex’s nurses. I won’t go into all of the details, as it would just make everyone feel how I felt. Alex is resting peacefully right now, and if her temp. goes up again, I will come right back to help Rob ice her down again. Her Neurosurgeon came in today and said how important it is to not let her temp. go to even 101. I was glad he said that in front of the nurse. I am not afraid to speak up, but I also don’t want it to become a power struggle. Luckily, the lady who is part of Trauma Services came and addressed it all. The only thing we know how to do is her temp. control…so if someone tries to take that away, it isn’t a good thing. Lack of communication I believe was the issue.
“Sorry, I got distracted when I wrote the last post. I was just going to say there is a specific list of what to do with Alex when the storms start. There is a pretty consistent pattern…Thank you.”
Jan. 7, 2012
“I appreciate all the concern about the girls. I would like to ask that people give us space right now so we can take care of what needs to be done. It is very draining to do what we are doing right now, so it would be best if we don’t get distracted with visits. I am feeling very tired, with a lack of energy to answer questions, etc. Alex cannot have visitors except her family right now. After she gets out of ICU, we will revaluate that decision, but until then, please do not attempt to go in to see her. I know this pretty much unnecessary for me to say, but there are the few…I just don’t have the energy to say it directly, hence this post. Thanks for understanding and not taking offense to what I am saying.
Alex is having an okay day. Nothing out of the ordinary for the condition she is in. I do have to say that when she opens her eye, she appears more focused when she looks at me. Wishful thinking? Maybe, but I don’t think so.  More later…”
Jan. 9, 2012
“I appreciate all the concern about the girls. I would like to ask that people give us space right now so we can take care of what needs to be done. It is very draining to do what we are doing right now, so it would be best if we don’t get distracted with visits. I am feeling very tired, with a lack of energy to answer questions, etc. Alex cannot have visitors except her family right now. After she gets out of ICU, we will revaluate that decision, but until then, please do not attempt to go in to see her. I know this pretty much unnecessary for me to say, but there are the few…I just don’t have the energy to say it directly, hence this post. Thanks for understanding and not taking offense to what I am saying.
Alex is having an okay day. Nothing out of the ordinary for the condition she is in. I do have to say that when she opens her eye, she appears more focused when she looks at me. Wishful thinking? Maybe, but I don’t think so. More later…”
Jan. 12, 2012
“Alex’s temp. is still staying down, which is a huge improvement. I just french braided half her hair, and she got very upset..heart rate went way up. I have been keeping it braided so it doesn’t get matted..but I took it out for a few days..what a mistake that was. Her dad thought we would have to cut it with all the paste in it. Hopee said no way! So with a collaborative effort, we have gotten it out twice now. In the whole scheme of things, her hair is a minor point, but I know she would be upset if she woke up with no hair!
Hopee is in pre-term labor in Albany General. I can’t talk about all the details, as she is a more private person..she thinks I blab way too much. I probably do! I am saying even too much at that. Anyway, hopefully they will be able to stop it. Not sure though at this point. Musical hospitals now…
We are still waiting to hear back from OHSU with their reccomendations of what they would do differently for Alex’s treatment, if anything…
More later…”
Jan. 13, 2012
“I am back in Corvallis. Stayed the night at River Bend Sacred Heart Hospital in Eugene. Hope is still there and will be for a week or two, unless her contractions stop. Landon weighs a little over 3 1/2 lbs. Tia, my Stepdad’s wife, who is a Godsend is with Hope right now.
Alex’s temp. hasn’t been as stable the last two days as it was. She has fluid in one of her lungs, but it doesn’t display the same pattern on the X-Ray as Pneumonia
so the doctor believes it is just excess fluid from what they have given her. I hope that is the case. She still struggles a lot with being touched, which sets off the automonic brain dysfunction symptoms, which is posturing, etc. The plan is to continue decreasing the sedative and give her brain a chance to find a new norm that is within an acceptable range.
Landria seems to be doing better walking. I saw her briefly last night, as she went to see Hope. I am torn between which hospital to go to. I am just going to play it by ear…
More later…”
Jan. 17, 2012
“Well, I am back in Corvallis. I just visited with one of Alex’s friends from school. He came to see her, and was pretty upset. I felt so badly for him. He was someone Alex spoke very highly of.
Alex had another MRI today. We have a big meeting tomorrow with all the doctors, with the Neurologist being the newest edition. His role is mostly for prognosis purposes. I am not sure I want to hear what he has to say. He already gave a short summary of what he thinks. We are going to seek a second opinon to be sure that the information we have is accurate, as that will influence our future decisions for Alex’s care. Alex’s main doctor is supposed to be contacting a trauma center in Chicago and one in New Jersey for advice about treating the Autonomic Brain Dysfunction. I have done more reading, and made a list of the most common medicines used for this. There are so many different things this is called, “storming” is what a lot of people refer to it as. I have to tell you that I saw her smile for the first time today. This doesn’t mean she was happy, as it isn’t uncommon for coma patients to do things like that. I have been seeing the same expression for a while now..sour puss! So it was nice to see her smile, even if it didn’t mean what I wanted it to mean. I am hoping we can figure out a new medication to replace the sedative she has been on. It is not as effective, as she could be building a tolerance to it. I feel better when I am reading all I can to bring something to the table for them to either try or tell me no, that isn’t a good idea. It is important to maintain HOPE, and not get into so much despair that it feels like it is all for not…That is why those meetings absolutely suck..it takes a few days to find a renewed hope from what they tell us. I know the odds are against us that Alex will wake up or be the same..but Miracles do happen. I am grateful God entrusted such a beautiful human being to me, as her mom. I have prayed and prayed for God to not make her suffer through this for no other reason but for us to be ready to let her go. She deserves more than that. No matter what happens, I will always cherish Alex, and be grateful I have been and always will be her mama’.
Hope is still in Eugene..Rob is staying the night with her, and then we will swap back tomorrow. She may get to go home on Friday.
Landria got her casts off today, but has to have surgery on her hand, where she was burned by the airbag. I am sure she is very happy to be rid of the casts, and be able to hopefully use her hands better. I believe her plan is to reside in Portland on a permanent basis. Rylan will be coming home within a few weeks, I think.
Eli has a surprise for me at my house. He stayed there with Bob and Tia after I let for the hospital..I think he did some home improvement project(s). Not sure. I know he took the X-Mas lights down..I don’t even think we turned them on more than a couple times. Hope everyone is doing well.
More later…”
Jan. 14, 2012
“Well, I am back in Corvallis. I just visited with one of Alex’s friends from school. He came to see her, and was pretty upset. I felt so badly for him. He was someone Alex spoke very highly of.
Alex had another MRI today. We have a big meeting tomorrow with all the doctors, with the Neurologist being the newest edition. His role is mostly for prognosis purposes. I am not sure I want to hear what he has to say. He already gave a short summary of what he thinks. We are going to seek a second opinon to be sure that the information we have is accurate, as that will influence our future decisions for Alex’s care. Alex’s main doctor is supposed to be contacting a trauma center in Chicago and one in New Jersey for advice about treating the Autonomic Brain Dysfunction. I have done more reading, and made a list of the most common medicines used for this. There are so many different things this is called, “storming” is what a lot of people refer to it as. I have to tell you that I saw her smile for the first time today. This doesn’t mean she was happy, as it isn’t uncommon for coma patients to do things like that. I have been seeing the same expression for a while now..sour puss! So it was nice to see her smile, even if it didn’t mean what I wanted it to mean. I am hoping we can figure out a new medication to replace the sedative she has been on. It is not as effective, as she could be building a tolerance to it. I feel better when I am reading all I can to bring something to the table for them to either try or tell me no, that isn’t a good idea. It is important to maintain HOPE, and not get into so much despair that it feels like it is all for not…That is why those meetings absolutely suck..it takes a few days to find a renewed hope from what they tell us. I know the odds are against us that Alex will wake up or be the same..but Miracles do happen. I am grateful God entrusted such a beautiful human being to me, as her mom. I have prayed and prayed for God to not make her suffer through this for no other reason but for us to be ready to let her go. She deserves more than that. No matter what happens, I will always cherish Alex, and be grateful I have been and always will be her mama’.
Hope is still in Eugene..Rob is staying the night with her, and then we will swap back tomorrow. She may get to go home on Friday.
Landria got her casts off today, but has to have surgery on her hand, where she was burned by the airbag. I am sure she is very happy to be rid of the casts, and be able to hopefully use her hands better. I believe her plan is to reside in Portland on a permanent basis. Rylan will be coming home within a few weeks, I think.
Eli has a surprise for me at my house. He stayed there with Bob and Tia after I let for the hospital..I think he did some home improvement project(s). Not sure. I know he took the X-Mas lights down..I don’t even think we turned them on more than a couple times. Hope everyone is doing well.
More later…”
Jan. 20, 2012

“Alex had a quiet day. I washed her hair and rebraided it. She also had accupressure to help loosen up her limbs. She responded fairly well to it all. Landria had her second surgery, which went okay. Sunday she will have the grafts done. Nice to have both girls back in the same hospital. Hope was released today, and she came to see Landria and Alex for awhile. Rob and I sat down with Eli to update him on what the Neuro docs told us. Even though they gave us a grim prognosis, we are still praying and doing all we can to ensure her health and comfort. There is a group of people in her room praying for her healing tonight. Don’t know what or if that will help, but I am not giving up Hope. I am realistic, but not without a belief that God isn’t done in this situation, just don’t know what his plan is, and that is scary. We want her healed and brought back to us. The reality to is that she may not be healed in the way we want her to be. It may be that her healing will happen in another place. That is so hard and painful to accept. Either way, it will be a process of acceptance and letting go of the illusion that we have any control over the outcome. Eli is an amazing guy..we asked him for his input..he has a way of looking at things that I know is how Alex would want to be represented. One never thinks to ask their kids what they would want their parents to do in this kind of situation. I pray for wisdom and direction to help us know how and what to do from this point. People may have their opinions, but how do you know until you are faced with any given set of circumstances. Not all Traumatic Brain injuries are the same..people have their miraculous stories they hear, but very rarely do people know any of the details about where the brain is injured and to what to extent. Brain stem damage is not something that can be recovered, and we have to have those functions to survive. I just pray that God will heal her. I sound like a raving loon. Sorry!

More later…”
Jan. 22, 2012
“What a day..Alex had a fairly quiet uneventful day. They are doing another MRI tomorrow. She has fluid around her brain, so they want to check and see if it has changed. They may want to put another shunt in, but not sure. We have a different Neurologist treating her for specific things to help her with range of motion issues. Ironically, she was my Grandma’s doctor when she had Alzheimers. She seems to not be so quick to think that 99.9% of her opinion is the end all. I would like to believe that as well.
Landria had her skin grafts done today. The procedure went well, and are fairly sure her finger can be saved. I know she is in a horrible amount of pain. I just hope this is the last big procedure or problem she faces with her injuries. She is walking really well, and using her left hand really well. Her pelvis is still painful when she walks.
I wish I could go to school with Eli to make it easier for him. He doesn’t want to answer more questions about Alex. It is just too hard and painful. Hope is doing well being at home. She drove over with me to the hospital today. She has to be in a wheelchair while at the hospital, as she is supposed to be on bedrest. As we were walking in the door with the wheelchair, the lady at the counter tried to stop me because she thought Hope was in labor. It was kinda funny. I couldn’t figure out why she was freaking out. Hope had to explain it to me. I was on a mission, just not the one she thought!
More later…”
Jan. 24, 2012
“Alex had a pretty good day, considering…We had the meeting with all the doctors, with the chaplain and social worker. I guess they felt we needed more support for this one. Very hard news to keep hearing over and over again. I really liked the Neurologist..he was very compassionate, and stated that he does not go by percentages or numbers. The Neuro doctors have added some medications to regimen to help her, so I hope that she will be more comfortable than she has been. I finally decided to clean up her eyebrows (poor thing has my bushes) she opened her eye and gave me the real stink eye. If only it signified what I wanted it to mean. We actually had to put the heating blanket on her, which is such a switch from freezing her out all the time. Her storming is less severe, and the length of time appears to be shorter. I know this is a good thing, but it doesn’t change the prognosis. I am not ready to throw in the towel..we are working toward removing the sedative, but have to do it slowly for it to be safe. This will give her brain a chance to be more aware if that is going to happen. Right now, it is really not possible for us to have a clear picture of how Alex is going to present herself to us. I know the doctors have their opinions based on their experience and knowledge. I am not underestimating their expertise, just not ready to underestimate the power of God either. I know the answer may be and probably be no, but I pray we will be able to endure that if it comes to that. We are all praying so much for the best outcome possible.
Landria is at her apartment in Corvallis until her follow up appointment on Thursday for her skin grafts. I took her over to see Alex today. Eli is staying with me at her place so she isn’t alone tonight. Rob is staying at the house with Hope tonight. I am going to plan to go back to work next week. I don’t know if I can actually handle it, but am going to give it a try. I have a mortgage to pay, and am thinking about the stacks of paper work I must have waiting for me. I miss it, and think it might actually help to distract myself..not sure though.
Hope everyone is staying dry in this sucky weather. I am grateful for all the prayers and support our family has gotten from all of you. I miss my friends and family I don’t get to see very often. I know my posts are full of a lot of reality and can probably be very sad. I do not mean to bring anyone down. I appreciate the feedback I get from my friends, and even people I don’t know. I will always remember how you all helped me through this.
More later…”
Jan. 25, 2012
“Today has been difficult, as it reminds of when this first happened. Acceptance is not always a joyful experience, as it means letting go of any semblance of hope or control over changing the unchangeable. I don’t know how to make through the next phase of this horrible journey that we are all on. I suppose the same way that we have thus far..with God’s help and one minute at a time. I feel frustrated with God for not giving us the answers we seek…God didn’t do this, but I wish he would undo it. I think about all the things Alex will not get a chance to do in her life. I am a natural pessimist..so it doesn’t come naturally to think of the things she has gotten to do. I do want to honor her with celebrating her life and being grateful I have gotten the chance to be her mom. I just wish so much that this wouldn’t have happened. It seems so cruel to her and to all of us. I pray that Rob, Jeanne’ and all the kids can be okay through all of it. There has been restoration and healing of a lot of relationships in my family. I just pray this continues as we walk down the road of this journey.
Alex has had another peaceful day. We have an appointment with another type of doctor tomorrow. We will be making some more decisions about her care.
Landria has appointment with doctor for her hand tomorrow. I am still in Corvallis with her, and Rob is with Hope. Eli became one of the managers for the swim team. He was so late in the season so they offered that to him. He is planning to do track, and I think that will be good for him.
More later…”
Jan. 28, 2012
“Just a very quick update..Alex has not passed yet. She is on the last phase of her journey on Earth. I am heartbroken and do not know how to let her go, but she needs and deserves to be at peace and with God. She has fought every step of the way to come back, and we have fought with her. Now, it is time to let her go, and be with God and his Angels. I will be forever grateful for all the love and support we have received. I felt the need to say this right now, as there rumors that she has already gone.
More later…”
Jan. 30, 2012
“Alex is still hanging on. She has a very strong heart..the doctors are amazed that she has been able to stay this long. We keep bathing her, brushing her hair, and trying to make her as comfortable as possible. There have times througout the last few days that I thought I might die right along with her. ( Or hoped) I know she would want me to stay strong, and not dishonor her memory. She always pushed me to be the best Nina I could be. When a person’s heart breaks, it keeps on a beating…I have never imagined this kind of pain. Some of her closest friends have come to say goodbye. I am sorry but we aren’t allowing anyone else to come in to see her. It wouldn’t be right for her anymore. I will let everyone know when this part of the journey comes to an end, and we all move into the next phase. I know this is very painful for everyone. I just hope I am not making it worse by some of the things I have said.
More later…”
Jan. 31, 2012
“I am very sad to say that Alex left us today at around 2:45PM…same time she was born. She went peacefully, and we could not ever have been prepared for her departure. I don’t know what the future holds without my Alexandra Makenzie. Her service will tenatively be this coming Sunday at the Scouts Lodge in Philomath, Oregon.
More later..”

I lost my child today.
People came to weep and cry,
as I just sat and stared, dry eyed.
They struggled to find words to say
to try and make the pain go away.
I walked the floor in disbelief,
I lost my child today.I lost my child last month.
Most of the people went away,
some still call and some still stay.
I wait to wake up from this dream,
This can’t be real, I want to scream.
Yet everything is locked inside.
God help me, I want to die.
I lost my child last month.I lost my child last year.
Now people who had come, have gone.
I sit and struggle all day long
to bear the pain so deep inside.
And now my friends just question, Why?
Why does this mother not move on?
Just sits and sings the same old song.
Good heavens, it has been so long.
I lost my child last year.Time has not moved on for me.
The numbness it has disappeared.
My eyes have now cried many tears.
I see the look upon your face.
“You must move on, and leave this place.”
Yet, I am trapped right here in time,
The song’s the same, as is the rhyme.
I lost my child… today!!!–Netta Wilson, written in memory of her daughter Caprice Cara Wilson

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5 comments

  1. ninaemalcomb · February 19, 2012

    I need advice…with or without comments?

    Like

  2. adriana · February 24, 2012

    Maybe no comments for the ones you had on FB?

    Like

  3. grannyscolorful · June 5, 2012

    My heart is touched more deeply than you know.

    Like

    • ninaemalcomb · June 18, 2012

      Thank you.

      Like

  4. Nina E Boone · March 5, 2016

    I might add the comments.

    Like

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