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Hi Mari,

Thanks for giving us an update. I, like most of the forumites, have been wondering what was happening and if you guys were okay. It is great that you both have taken up Zumba. I hear that it is a lot of fun and a great way to get some excercise. I am going to start a workout program soon and am looking forward to the results but not looking forward to the pain that comes with getting to the results you want. :blink:

Please keep us updated on Lauranda's progress.

Donna

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Mari, I just wanted to tell you that you are such a blessing to this community. Your insight and wisdom are so valuable. You always have a level head and loving heart in the words you share, and I ap

Thank you Leah! I'm glad I was able to add to my photo gallery. I was trying to figure out how to post from my phone, since I can't get access to Abrazo website from home computer.. And to borrow

Beth Thank you Beth… I needed the hugs …. Not feeling sorry for myself or anything, it’s just part of the journey and process and those bitter sweet moments that creep up especially during SPECIAL/Me

Continuation….Part 34

When her dad got there, she was asleep again, he sort of tip toed to me and whispered if it was still ok for him to be there, I had to laugh at his expression. I told him it was and for him to be prepared, it would probably be my turn soon. He looked at me and his look was a perplexed one, so while my daughter was asleep, I took the opportunity to fill him in on all that had/was happening, and for him to be careful on how he responded to her, for him to be very cautious she might all of sudden wake up and be angry and no telling whose turn would be next to get blasted, I tried to prepare him as best I could, but it really would be something that he would have to experience to fully understand what I was talking about. I told him she was paralyzed on her left side, though it was temporary, and that her nurse Angela would be there at all times. I waited for her to wake up before I left to go outside for a little while to warm up and eat. She seemed to be in a good mood, but I was still worried, told her dad to call me if I needed to come back up.

While I was outside I called and left messages on phones of four of her friends, then called family to update them. I called my son in law and updated him, my daughter was asleep she had worked over night, but he had already arranged for her to take the night off and he would tell her when she got up. I prepared myself for the call I was going to get from her as soon as she learned what was happening with her little sister. I wasn’t’ looking forward to that call though, I knew she was going to be worried for her sister and upset that she wasn’t there for her or me and yeap, even mad that I hadn’t told her sooner.

As soon as I ate and made those calls I went right back up to her room, as I walked through the doors of the NCCU, my husband was standing outside of my daughter’s room and her room was filled with nurses and one of the doctors, I froze, my first thought was fear for her life, my heart sank like a boulder to the pit of my stomach, what had happened, she was fine when I left her. As I found my senses I rushed up, my husband saw me and grabbed my arms, told me “she’s ok, she’s ok, she had a seizure, the nurses responded quickly, they contacted her doctor right away, they started her on seizure medication, they are now getting her stable”..I just stood there not knowing what I was feeling, thinking, or needing to do, the helplessness and fear were pretty intense, but we could do nothing but wait. I had only been gone half an hour if not less and this happened, I asked him when it happened and he said about fifteen minutes after I had left, he hadn’t called me, he didn’t want to scare me and said everything had happened so quick, he had to leave her room when the medical staff came in to take care of her..Thoughts running through my mind were pretty much out there, was she ok, did this cause any damage or could it, was this something she would have for life, how soon before it was going to happen again, how would this affect her recovery, how would we deal with it if it happened at home? I felt myself trembling and felt the hot tears well up in my eyes, just thinking one more thing for her to have to deal with, but she had her life, we still had her here, we could handle this, we had come this far, God wouldn’t take her from us now.

It seemed like we had been waiting a long time before the doctor finally came out to talk to us, said that they are never sure if a seizure will occur, so they don’t put them on medicine right after surgery so they can monitor, they usually hope it doesn’t happen, but if they had started her on the meds right away they wouldn’t know if she was going to have them or not. It was best to wait; they could be triggered by nerves that are cut during the surgery he said, she would require anti seizure medication which she had already been started on. Once it was all clear we were allowed to go back in, she started having what they called involuntary movement of her limbs on her left side, which scared the heck out of me, not knowing if this was the start of another seizure, but it was the paralysis that was disappearing gradually. A few hours later though, she could move her arm, leg and foot a little when they asked her to move them, there were areas where she still didn’t have sensation.

Her dad left for a while and I sat with her as she slept on and off the remainder of the day, she still was between confusion of things in the past and current time. At one point she was talking to her nurse about Wendy and how she had just walked by to the desk, nurse asked her where she was and she pointed out her glass window to a nurse at a desk directly in front of her room, Angela asked her which Wendy she was referring too, my daughter told her, “Wendy, you know the one from never never land”, “oh I see her” replied Angela and then she just winked at me. Angela told me that they did have a nurse Wendy who had been there earlier and I wondered out loud how my daughter would have known that, we both (nurse and I) figured that my daughter may have heard the name and somehow it made an impression on her and stayed in her mind. A little while later a friend of my husband’s walked in to check on her and ask for him, she told him he had left to let her dogs out and feed them, though that’s not where he had gone, he had been doing that since that previous Friday so it was more of a previous memory. He asked if we needed anything, we advised him that we didn’t and thank him for stopping in; we would let her dad know he had come by. The nurse asked my daughter who he was and she replied by giving her his name and who he was, she(nurse)looked at me for confirmation, I guess to see if my daughter did recognize him and knew who he was and I shook my head yes to confirm she had been given the correct info..Since this was all new to us, the whole thing was really a bizarre experience that would take some adjustments.

As far as we knew, the baby to this point thankfully was doing well; both my daughter and my granddaughter had survived the surgery. This would again, be a wait and see situation, of course we knew neither mother nor child were out of the woods by a long shot, so it was one day at a time for everyone. The anesthesiologist had come by in the late afternoon to check in on her as did her OB, a few hours later her surgeon made his round to check on her. The nurse’s report was good, vitals had pretty much remained stable since the seizure..She was still more groggy then not, but that was expected, after a good night sleep she would/should be more refreshed in the morning..

They still had the bag and tube draining fluid, though her doctor had made a larger secondary opening inside to allow the fluid to drain down her spine from her head to prevent the need for a shunt, the tube would remain until they were sure everything was working properly and to help the fluid drain a bit faster. It was strange to see that bag that in the days before was filled with clear fluid now had a dark reddish brown color to it; of course this was from the blood that was mixed in with the spinal fluid. These were all little things that seemed to magnified all that had happened, not that we were in denial, it just seemed to put in perspective what she had just gone through, how delicate and crucial her situation was, even now after the removal of the tumor that almost killed her, there seemed to be so much more ahead of us that we didn’t understand, we couldn’t understand, as her dad and I sat there with her, the conversations that we were having with her felt so strange, it all seemed so surreal.

Our deacon came by to see her and give her a blessing, she had a very normal conversation with him, he was there maybe five minutes, I walked him out and we talked for a little while, he gave me his cell number to keep him posted on her condition and recovery, by the time I walked back into my daughter’s room, she had already forgotten who had just been there and where I had gone, a little while later one of her dads good friends from high school that my daughter has known all her life, she calls him her uncle s also came by, again just a couple of minutes to check on her, this time her dad walked him out, and I realized that in less than five minutes when I asked her who had just visited her, she struggled to remember who had just been there, I had to give her several hints before she guessed who it was.

Nurse’s rotation was at seven, her new nurse came in to check vitals, and we were now at a point that the nurse no longer had to be in her room all the time, as far as we knew the most critical period after surgery was now behind us, though she would be coming in every half hour. Both my husband’s and my phone were pretty active with calls and text messages, though unless it was someone that I really needed to talk to (family), I let my calls go to voice mail, once my daughter fell asleep I would reply back. A couple hours later my son in law called, my daughter was in the shower and he was going to tell her as soon as she was out, she still thought she was going to work..Ugh, I felt my stomach tighten, told him that I was ready for her call (not really, I thought, but wanted to get it behind me) and reminded him to please be gentle with her when he told her, nothing left for me to do but wait for her call. My daughter seemed to be out for the night, other than when they would come in to check on her that she would wake up for a bit, but she wasn’t staying awake for long. Her dad had arranged for her brother to go by the house to feed and let the dogs out so he wouldn’t have to leave. We decided to once again take turns staying up with her, he would take the first shift, I tried to settle into the lounge chair to rest and try to relax a bit, replied to texts and closed my eyes for a while, and waited for my daughter to call me.

To be continued......

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Mari thank you again for sharing this very personal story with us. I can't beleive how much you all have been through and your strength and faith amazes me.

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Continuation…Part 33

We finally received the call we had eagerly been awaiting, my daughter was doing well, surgery was complete, doctor had already started closing her up and he would be out to talk to us as soon as he was done. I was so grateful that every time they called us the nurse started by telling us my daughter was doing well, even though I didn’t want to think that something could go wrong and that would be the next call, it was always there, in the back of my mind. We all gave thanks to God, and I could see the relief in everyone waiting with us. Now we waited for the doctor to come out, we still didn’t know nor were sure what would come next, would she be taken up or would she be kept there in recovery, would the tumor be malignant or benign, was he able to get it all and clear the passage for the fluid or did he have to insert a shunt, and the baby, was she ok, did she make it through. It was so noisy in my head, one step at a time, don’t get ahead of yourself and make yourself crazy, were things I kept trying to repeat to myself to stay calm and positive. Shortly before noon the doctor came out to talk to us, she was on her way up, they were taking her back to her room in the NCCU, he felt confident that he had gotten all the tumor out, part of the tumor had collapsed when he tried to remove it with the scope which would have been much less evasive then the full cut, but once part of it collapsed due to lack of blood supply he had no choice but to open her up. He told us how much hair he had to take which amounted to approx. a little less than three inches wide, the incision was eight inches long across the top of her head to above the ears, though he had thought at first he knew what type of tumor she might have, he found that the texture and coloring were different, he hadn’t seen one like hers and he didn’t want to guess, the tumor was being sent to the Mayo Clinic for biopsy and once he had the results of type of tumor it was, he would know if further treatment would be needed. For now we needed to wait on results. He said it would be a little while before we could see her, but we could go up to the waiting room of the NCCU and they would come and get us.

Our family moved up to the waiting room, my husband paced back and forth wanting to go see her, I sat with my mom and sister, trying to patiently wait, which was a tough task to accomplish. About a short time later the anesthesiologist came into the waiting room to see us, he went over the surgery as had her surgeon, he also told us that her surgeon was one of the best in his field and he had worked with him for twenty five years. She was in good hands he said, she did amazingly well, “she will be ok”, as soon as they had her settled in her room, a nurse would come and get us he assured us. I really hadn’t experienced an anesthesiologist follow up with the family after a surgery and spend as much time with us as he had, it was very comforting to know that he had taken the time. Once more on this leg of our journey, we were met with yet another compassionate doctor. I felt like God was truly embracing us with his robe and assuring us things were going to be ok by sending these special people into our lives.

There seems to be something there with some people, men really, who are part of the Catholic ACTS community, that I have noticed and encountered. The reason for this I should mention, or at least in my view, is that while we were waiting for my daughter to go into surgery and her anesthesiologist was talking to us, I noticed he was wearing the ACTS fishers of men bracelet, I glanced at my husband’s wrist and he was also wearing his. Both my husband and the doctor also noticed that they each were wearing them, after he (doctor) was done talking to us about the medication, he went over to my husband and shared some commentary about ACTS and they exchanged information about their perspective church communities, my husband asked him to take care of his little girl and the doctor assured him he would do just that. I am not saying that the doctor took better care of my daughter because of this, I am sure and it was obvious that he really cared about his patients, but I saw it as another one of God’s interventions, another sign he had sent our way.

My husband couldn’t wait, he went to check on her and a little later came out to get me, he told me my daughter was asking for me, he advised me that she was paralyze from her left side, but they had told him it was temporary. As I walked through the doors of the NCCU, we were met by a nurse, there were still several nurses and one of her doctors in her room, the nurse told me that my daughter was asking for me, and If I could go in first, as we walked she stopped me at the door and advised me that my daughter was very angry at her dad, and it would probably be better if he waited a while to see her, in order not to agitate her further. I was not sure why, how or what was going on, so I went in to see her. I was totally unprepared for what I saw and heard and it scared the heck out of me.. She was moving her right hand and reached for me, as she talked the left side of her face did not move and the nurse was touching her left arm and leg and asking if she could raise her limbs or felt the touches, she couldn’t do either. She seemed to be fully awake, but was talking about things that had happened a year to over three years prior, she was saying that she hated her father, he was mean, and when I asked her why, what had happened, I found that the anger she was expressing for him, was due to an argument/fight they had over a year before due to her boyfriend, but she was talking as if it had just happened. I just looked at her nurse, and I knew she could tell and sense that I was completely confused and worried; she assured me that it was normal for this type of surgery; it would take some time for the distortion in her mind to clear up. She was dozing off and on, I stepped out to tell my husband what was going on and asked him to tell our family that they would have to wait until the next day to see her; she was in no condition to have company, I asked him to thank them for us, and we were sure they would understand, but it was best that she not have any visitors that day. We would keep them posted via phone for now. He was pretty upset that she didn’t want to see him even though I explained to him the situation, and I knew it was more the fact that he was hurt and not really anger on his part, but it was really hard to tell by his actions. He was going to go tell our family, and then go get something to eat and go home for a while, told me to call him whenever she wanted to see him and left. Well, couldn’t worry about him, I had my daughter to go to..I walked back into her room, and sat by her bed for the next three hours. As she talked about events we had been a part of over the last three and a half years, I was amazed, each time it was as if they had just happened, the clarity with which she talked about them made me also feel like they had just happened. It was a very strange feeling, almost like one of those time travel scifi movies, where people travel to the future, but we were traveling back in time and reliving events. It was almost as if the things she was remembering were things that had left the biggest impressions on her. She would drift off to sleep for very short periods of time, then all of sudden she would wake up and be angry at her dad all over again, how she felt about him at those particular times were pretty intense, each time her blood pressure would shoot up and heart rate would accelerate..I learned very quickly to change the subject gingerly, and in some cases just go along with what she was talking about..I noticed and learned that if I tried to correct her or tell her what she was talking about wasn’t’ the case, she became more agitated..Because to her at that moment and in her mind, what she was thinking about was her reality, it was to her the current time and place where she found herself. She talked about her best friend, all of a sudden she would say that L had just left her room, “mom L said she will be right back”, then she would jump to “boy that was a lot of fun at the carwash” and when I asked her what car wash, she told me, “yesterday, the eighth grade carwash, you forgot already?” (which we had in April 2006), or something else completely different, she had just talked to a friend on the phone, or she had talk to her aunt that morning. .I found that I had to also be as quick on my feet with responses and thoughts to keep up with her, I was just never sure what we would be discussing next or what her mood was going to be, she took us through those last several years in quick flashes. I started to picture us as a ball in a pinball machine.

She finally fell asleep for a good thirty minutes, and when she awoke, she was still somewhat confused, but was also more aware of her current surroundings..The nurse kept checking for movement on her left side, she had all these tubes in her, each connected to a different bag of something or other, or going to two large monitors. She finally asked where her dad was, I told her that he had gone to get something to eat, I still approached the topic of her dad gently, the big proceed with caution sign popping up in my head, and asked her if it was ok to call him to come sit with her so I could go walk a little, I braced myself not knowing what her response was going to be, but she said “sure, you need to get something to eat too”. So I called to tell him, he had the green light to come back and see her, he was going to pick up something for me to eat and be on his way.

To be continued….

First of all, Mari, maybe God will lead you to write a book. You have the gift of writing and drawing everyone into the unfolding story of your daughter. Thank you for sharing.

I too have a fishers of men bracelet. I hold my "WALK" very special with many Christian communities. I am forever changed. I wear my bracelet daily as a reminder of HIS love for ME and whatever trials comes my way I WILL CHOOSE JOY!!! AMEN!!!

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Hello forum family,

Just a short update….my daughter and I are doing well, most of the time…..

She had her appt. w/endro and after a slew of test, we rec’d diagnosis at her follow up a few days ago.. Doc was looking at three possible reasons for her symptoms/health concerns; it was one of the three. Unfortunately she has been put on meds that have some not so pleasant side effects.. It is sort of strange, out the three possibilities one really had us concerned, thank goodness it wasn’t that one, though none were very good, so even though what she has seems to have some sever repercussions in the future if not taken care of, it seemed to be better then the other possibilities. I am still doing research on what she has been diag with to better educate both she and I, the good thing or bad thing (glass half full or have empty) is that we are finding out this seems to be a very common thing, so lots of info out there.

We continue to travel new territories; sometimes I picture this road we are on like the ground after an earthquake, with cracks that spider out in all directions…Staying positive and looking at the brighter side, has no doubt been a challenge this last year, but we can not, I can not allow either one of us to give up or let everything thrown at her/us to beat us down, there are so many more positive things in the world for her, for us that outweigh the negatives, sometimes we just need to keep reminding ourselves.

Good news though, she has remained focused on her studies, has earned another credit in the last few weeks, she is close to earning one more, which she should get in the next couple of weeks, then will have one more to go to finish her senior year.. She is slated to take her ACT later this month. I think this focus has also helped keep her sane sometimes..

Your prayers for her continued courage and strength physically, spiritually and emotional greatly appreciated and needed..

Dyna, congrats on your ACTS journey, my daughter also has hers, attended her first retreat in 07 and was part of a team in 08…

Blessings to one and all,

Mari

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Praying for your daughter's continued health. I too, want to be on a TEAM. That is a goal of mine in the near future. :D

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Mari

You all are an inspiration. Your faith and strenght are amazing. Keeping you all in my prayers and hoping that Lauranda feels better soon.

Char

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  • 1 month later...
  • 2 weeks later...

Thank you for the B-day wishes... Paula, Heidi same to you my fellow November b-days and anyone else I may have missed..

Wishing everyone a wonderful and blessed Thanksgiving in the company of your family and friends.

Sending special prayers to ALL BIRTHFAMILIES everywhere, may you find yourself surrounded by an abundance of family and friends who will embrace you with warmth and love to help ease the void in your life during this holiday season.

The Ship of Life

Dear Lord, steer the ship of my life to your quiet harbor, where I can be safe from the storms of conflict, show me the course I should take.

Renew in me the gift of discernment, so that I can see the right direction in which I should go to find much needed solace. Give me the strength and the courage to choose the right course, even when the sea is rough and the waves are high. Knowing that through enduring hardship and danger, in your name I shall find comfort and peace. Amen

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Mari,

Trusting that your family is doing better & healing.

Just a note to say that I've missed loving post.

Come back when all is well.

xoxo, Amy

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  • 4 weeks later...

Mari,

Trusting that your family is doing better & healing.

Just a note to say that I've missed loving post.

Come back when all is well.

xoxo, Amy

Thank you Amy... We are trugging along...Blessing to you and yours..

Wishing everyone a very Merry Christmas in the company of all your loved ones...And thinking of all who need special prayers during this holiday season, holding you in my thoughts, prayers and heart..

Thank You, Lord, for Your healing love. We ask You this holy night to please heal us, in our hearts, wherever we are lonely, empty, fearful, proud, or resentful. Heal this brokenness in us, dear Jesus. Give us Your deep inner peace that we might impart joy, hope, and courage to all whom we encounter.

This Christmas, dear Lord, please open our hearts to see You more clearly, to receive You more deeply, and to follow You more willingly. Increase our ability to give Your love to others, and to receive Your love from others. May this Christmas Day warm our hearts all year, and only increase. Thank You for coming to us, Lord Jesus.

Amen

blessings,

Mari

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Mari, so glad to see your post this evening! I've been thinking of you and wondering how you and your precious daughter are doing. (Thank you so much for the lovely framed photos you brought by, for our gallery. Come see them "up" sometime!) I know the holidays can be bittersweet when we are unable to have all our family around us; please know I am lifting you in prayer this Christmastide. Big hugs!

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Mari-

You have been missed by many around these parts. May the holiday season be joyful for you and all those you love. May the New Year bring you your dreams fulfilled.

xoxo

Heidi

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Indeed missed... Merry Christmas Mari!

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Mari- The new photos are amazing!!!! The girls look so picture perfect!

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Mari thank you for that beautiful prayer. You have been missed. I love the pictures. Wow what a beautiful little angel your granddaughter is. I hope your Christmas is filled with love and happiness.

Merry Christmas,

Char

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  • 3 weeks later...

Hello everyone,

Thank you ladies so much for your kind words.. Elizabeth, glad you like the pics, hoping we can get by there in the near future to see them up.

Our family has been hanging on..this has been a difficult year to say the least, and the last several months have been a little tough, but we keep plugging along. Thank you also for the nice comments on the pics I added to my album, my girls are lovely if I do say so myself. ;)

We had the opportunity to see my beautiful grandbaby in Oct and then again in Nov which was awesome..We are so grateful to have been given the opportunity to have the portraits done of my daughter and granddaughter, these certainly made the holiday season more bearable for my daughter, her dad and I.

My daughter had her follow up with her neurosurgeon in Nov and even though her EEG from Oct came back abnormal, she is still in remission, her doc weaned her off the anti seizure meds which she is happy about, but that made me a little nervous, hopefully she won’t have any more need for it, but we will have to wait and see. Her next MRI is scheduled for Feb, she also continues to take the meds the endocrinologist prescribed, there wasn’t much change in her lab work in Dec, and she was feeling a bit discouraged, but I reminded her she had only been taking the meds since mid Oct so to give it some time, the nurse advised that it may take up to six months to see improvement, hopefully when she goes back in Feb. there will be at least a little so she can get at least some encouragement.

Trusting all of you had a good start to the New Year and that God has many blessings in store for the remainder. Once again thank you..

blessings,

Mari

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Mari -

Hugs to you and yours. May 2010 be the year of restored health for your daughter. Again the photos are amazing.

Hugs

Heidi

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Mari thank you for the update. I love the pics they are so beautiful. I hope the New Year is filled with healing in health and heart for you and your family.

God Bless,

Char

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Continuation….Part 35

As I expected my daughter’s call came in around 10:45 that night, I explained what had occurred to her little sister, and walked her through the events of the previous weeks, then spent another half hour reassuring her that her sister was doing well so far. Then I prepared myself for the emotional rollercoaster that my daughter was obviously going through as I heard her cry, the concern and fear in her voice on the other end of the phone, it took great inner strength to maintain my own composure, the last thing I wanted to do was frighten her even more if I became emotional, and I feared she would think her sister was not doing as well as I had told her. Once she had the opportunity to release many of her emotions, she seemed to be calmer and assured me that she had no plans in going into work, she was going back to bed, she needed me to assure her that if anything happened I would contact her immediately, and I promised I would. Once we were off the phone, my husband and I talked about the events of the day, we both sat next to my daughter’s bed and just watched her sleep. Once again we took turns keeping vigil, as I sat there I thought back to my oldest daughter so far away, I wondered if she was sleeping or laying awake thinking of her sister, I so wished I could have been able to hold her, offer some comfort with my arms around her and sooth her fears. I knew once she learned of what had happened, she was going to be terrified for her sister and feel that she should have been there for her sister and for me, after all__ this was so much more crucial and delicate then a few months prior when she learned her sister was pregnant and flew into town to be with her. I thought of how ironic, well not really sure if ironic is even the right word, of all that had happened within the last few months, the dips on this rollercoaster ride we were on kept getting steeper the turns somehow seemed more ferocious with these major life changing events that we had been through to this point. I prayed for strength and courage for all of us to continue to plow ahead, we couldn’t give up now; we couldn’t allow ourselves to get discouraged and lose our faith.

Before we knew it, it was five am, her vitals had been good during the night, they would be in shortly to check her again, she had already started to stir and I was anxious to see if the left side of her face had relaxed and returned to normal. I was also both anxious and hopeful, if that makes any sense, as to what this new day would bring; we waited for her doctor to come by. My daughter’s face was still not back to normal, but she was able to move her arm and leg a lot easier then she had previously. She wanted a mirror to see what she looked like, she didn’t seem to remember much of the previous day, I silently thank God for that, but she did have a lot of questions, especially after she saw the bag of spinal fluid which was still the reddish brown color that was still hooked up with the drip from her head. She didn’t seem to be alarmed when we explained that it was due to the surgery and some blood that was mixed with the fluid.. Within a few minutes she asked about it again, it seemed like every few minutes we were having the same conversations, her doctor explained that she would be experiencing short term memory loss, the paralyzes on the left side of her face, as well as numerous other side effects she was having would eventually clear up, they were all temporary. Over all she was in good spirits, seemed calm and relaxed, her dad and I took turns quizzing her on events and people, though it was still somewhat a bit alarming that she didn’t remember things, events or people, even though we knew why. Each time the nurses or the doctor came in they would check the strength of her legs and arms as well as her grip.. She has always been physically a pretty strong person, pretty solid, don’t know if that was due to her workouts and playing sports or if her strength made her the good athlete she was, but she had some awesome power in knocking those balls, whether in volleyball, basketball, softball, golf, or tennis from the time she was a tiny tot, so we knew it was only a matter of time that her strength would be back, of course as long as there was no nerve damage that prevented it.

Some of her aunts were going to stop by, as was my mom, I had asked my brother and sister not to bring my niece and nephew just yet, I wanted them to see her first. Both of her cousins are sensitive individuals and I was afraid they would be needlessly frightened at how they saw her. She had developed what seemed like a nervous twitch around her mouth and she kept biting the right side of her lower lip, her hair was also extremely matted with dry blood, I would let my sister and brother decide when the time was right for my nephew and niece to see their cousin.

We called her previous high school to get her previous years year book, we wanted her to have something that would help her with some of her memory blanks, she seemed to remember things from two years prior, but didn’t really talk much about more recent times, people or events, my sister in law would get it and bring to her, she also brought her a small photo album that contained pictures of my youngest niece and nephew, my daughter’s two pride and joys. We asked another one of her aunts if she could bring her a spiral notebook to keep a journal of the daily events. Her sister called and spoke with her for a while several times, but not long after she was off the phone she didn’t remember she had spoken to her much less the conversation, the same was true with her visitors, while they were there, she had normal conversations, but shortly after they left, she didn’t remember they were there, so keeping her journal became almost a life line for her. I had made the phone calls she wanted me to, and all were told that we would contact them when she was up for visitors outside of the family.

Five am Thursday morning they took her for a ct scan, she had awaken once more in a good mood, she had a slightly busy day Wednesday, but we vigilantly monitored who came to see her and how long they stayed, we limited visits to no more than ten to fifteen minutes and only one to two people at a time, with either her dad or I remaining in her room at all times, we made sure no one mentioned the brain tumor, she was still referring to it as “a blockage”, we also made sure that anyone who came to see her knew ahead of time what to expect when they saw and talked to her, well we tried to convey it as best we could, but__ some things just have to be seen for themselves.

They had been taking her vitals every two hours throughout the night and after her cts, her doctor made his morning rounds, her ob had also been coming by to see and check on her daily, she had breakfast was talkative, and then something changed, luckily she had nurse Elizabeth, the same nurse she had the day before and twice prior to surgery. We noticed that she had become pretty quiet and lethargic, Elizabeth watched her carefully and kept checking in on her every few minutes, my daughter was certainly different then she had been the day after surgery, Elizabeth kept asking her questions, her speech became sluggish, she couldn’t keep her eyes open for long and she started getting headaches, she was getting disoriented once more, I knew her nurse didn’t want to alarm us, but we could see she was concerned. It was barely eight am, and after we all tried unsuccessfully to keep my daughter awake for even five minutes, nurse Elizabeth said that something wasn’t right and walked out of her room straight for the phone and was calling the doctor.

to be continued......

Edited by 1st x grandma
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Nurses love having the same pts to care for because it helps us "catch" things. I am glad to see that you are ready to continue writing the story. Yours is an amazing journey

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