Bouncing and ice chips

Caroline Grace is Mom's speech therapist.  She is a bouncy 20 something that visited Mom this afternoon to assess if Mom was swallowing correctly.  She had to give Mom different things to swallow and then feel the neck muscles to make sure they were working correctly. Mom got to have water, ice chips, and apple sauce.  One bite of each was all it took to conclude that Mom needed more time healing.  Mom was allowed to have a SMALL cup of ice chips, but that is all.  For now, she is still fed with a tube in her nose.  I am sure once that is out she will feel better.  Caroline will come back tomorrow morning around 9 to try again.  If Mom doesn't pass her test, then more extensive evaluations will be done.  

Mom seemed sad today.  Daddy thinks it is because emotionally, she is just now waking up and catching up with us.  We have had two weeks to process the tumor and all that followed.  Tears still leak out of my eyes at the least expected moments - like at Luke's well baby visit to the doctor today.  Ethan says that emotionally, she may have some ups and downs.  

I did get Mom to smile at the nurse today - just once. The nurse today was named Whitney.  This was her third shift.  She was paired with someone else, but I don't remember her name.  They double teamed Mom today.  I loved it!  Whitney was an energetic, happy person.  She bounced as much as the speech therapist.  She asked many questions and for the first day since we have been there - I felt like I knew just about everything.  I was listening to questions about what tubes did what, explanations of numbers and goals for those numbers, and I even got to look at a photograph of Mom's surgery (tumor included).  We thought it was best not to show Mom that picture yet.  After the speech therapist left, Mom was allowed a tiny cup of ice.  Mom loves to eat ice.  She ate the whole cup in just a few minutes.  After a bit, I asked Whitney for more ice for Mom.  Whitney wasn't sure she could go get some, but she did anyway without asking.  I encouraged Mom to give Whitney a smile to show her thanks.  Mom did.  It was brief, but it was a smile.  Ethan reminded me when I told him about this at dinner that Mom is not a bouncy person.  She never really has been.  If the speech therapist, nurse, and I were all around her bedside today cheering and bouncing, Mom could be just irritated.  We will know more when she chooses to talk.  

The nurse in charge of Whitney for today told me that Mom's head looked better.  The liquid was draining and the swelling was going down.  I didn't ask them to remove the bandage so I could look.  I just trusted what she said.  Yesterday, Mom had a gauze bandage over her head.  Today she had a gauze bandage and an ace bandage for added pressure.  This should help the skin stick to the skull.  Her ICP numbers were in the normal range today.   The shunt drained extra fluid off of her brain today.  Tomorrow they will try again to turn it off of draining to see how Mom does.  If it goes well, maybe she will have that out by the end of the week.  The shunt has to be out one or two days before Mom moves to another place in the hospital.

I was glad I was with Mom today at the hospital.  I was able to "snuggle" with her for awhile.  Whitney, the new nurse didn't seem to know the rule for "no chairs for visitors."  Whitney often left her chair right next to Mom's bed unattended.  Tonight, my feet do not hurt thanks to Whitney.  So, with my chair, I was able to lay my head down on the railing of Mom's bed.  Mom was not restrained today either.  I was happy to have her unrestrained.  Her hands held my hand and snuggled with my arm.  Some days all you need is a snuggle to feel better.  I am hoping mine helped Mom.  

I cannot get to the hospital until noon tomorrow.  I have a doctor's appointment at 11 in Mansfield.  I will spend the afternoon with Mom and then Daddy will come up in the evening.  

She speaks!

Mom's first words were not to me, but to the doctor.  I happened to run into him when I left the room to give Mom time to rest.  We ran into each other on the second floor.  He told me he was going to go see my mom right then.  I told him about the breathing tube and he asked if she had spoken yet.  The nurse told Mom and I that I couldn't ask any questions that required more than a "yes" or "no" nod of the head.  She told Mom not to try to talk until tomorrow.  I did remind him that the nurse probably wouldn't make him follow the rules - he was the doctor after all....

He was waiting to get on the doctor elevators.  I decided it would be awkward to ride in the doctor elevators, so I told him I would meet him in Mom's room and raced up the stairs.  I beat him.  

He said hello to Mom and then asked her 3 questions:

What is your name?

What year is it? (Tricky - it is just now February.)

Do you remember where you are?

Mom answered, "Debbie", "2009", and "Baylor."  

Somehow these words were not the ones I thought Mom would whisper after exactly 14 days of silence.  The words were said in whispers that were so quiet they had both the doctor and me leaning over her bed.  Both of us were about a foot from her head and straining to hear.  I think maybe when she chooses to speak she will have some deep philosophical words for us.  Until then, I was happy with these words.  

When I first went to see Mom, the nurse had sedated her.  Mom was very irritated with her breathing tube.  The nurse had given her morphine, but it hadn't helped.  Sedation did help because Mom could just sleep.  I held her hand for awhile and then went to find a place to sit and wait.  I had some work to do, so I did it.  The nurse had promised she would call if she saw a doctor.  I still checked on Mom several times, though.  

I had a friend visit (Susan Walden) and we talked for awhile.  She took me to lunch, too.  The doctor called while we were eating (of course) and I rushed up to Mom's floor.  He told me the breathing tube would come out - right then.  I waited in the hall.  After the breathing tube, Mom got to eat ice chips.  The nurse wouldn't let her have too many at first, but after about an hour the nurse turned the ice cup over to me and Mom ate the whole thing.  We had a system.  If she wanted more ice - she had to squeeze my hand.  She squeezed my hand often.  It was a good day! 

Mom didn't want me to leave.  When I stepped out for just a minute to call Dad and run an errand I told Mom to sleep.  That is when I ran into the doctor and rushed back to her room.  She is doing so well!  

Mom's ICP levels were normal today.  Every time she coughed the alarms went off because her ICP levels would shoot into the 30s.  The nurse assured me this was normal and it was fine as long as her pressure went back down.  If the pressure stayed up for more than 15 minutes - I needed to get someone.  Thankfully that didn't happen.  

Remember - yesterday we turned off Mom's drain from her brain?  Her ICP levels had been great, so the doctor turned the drain off.  Brain fluid still wanted to drain, so instead of going out of her head via a tube, the fluid collected between her skull (on the outside) and her skin.  To fix this mostly "cosmetic problem" (Doctor's words - not mine), Mom's head was bandaged again in hopes that her skin would again stick to her skull.  The shunt will stay in until this problem can be fixed.  The tube was opened again to allow draining.  

All of this is great news!  Mom is getting better!  Thank you for all of your support and please continue to pray for my family!

Bored and Uncomfortable

Well, y'all are stuck with an Ethan update today, but for good reason as you will see below. I spoke with Amy briefly a few minutes ago. Debbie is off the ventilator! They removed it this morning but she is not allowed to attempt talking until tomorrow. Amy says that her mother doesn't want to be left alone and seems very bored and uncomfortable. I told her that this seems fine to me for now. This means she's alert and aware enough to feel this way, so she can be as bored and uncomfortable as she needs to be. So today looks like it's going to be a very good day! Amy didn't pass on any info on last night's CT scan, but if it looked good and her ICP is steady they will "plug" the shunt going into her skull for now.

Debbie seems to be improving steadily and we are all encouraged by the past 2 days. On a side note, forgive me if I ever shift back and forth between referring to Debbie by her first name and by Mrs. Fromm. I've known her since I was 14 and its awkward to transition to something less formal. Sorry, its just how we were raised. Amy will post another update this evening. Please send up prayers of thanksgiving while continuing to petition for healing and patience.

Language of Blink

While I was with Mom today she looked a bit bored. I would be bored too in a room in which I couldn't talk, couldn't watch TV, and couldn't read. I have been trying to find things to read to Mom, but I haven't had much luck. In the latest book "Julia Speaks Her Mind" we are just now to chapter 4. I am not sure if Mom doesn't like it or if we get interrupted by personnel so much she cannot follow the story line. It is a charming book about a lady from the south who finds herself with a deceased husband, more money than she knows what to do with, and an unexpected 9 year old who happens to be the son of her dead husband that she didn't know about.

Mostly, I just held her hand today. She was more awake. She could nod, squeeze my hand, and move both legs. (I hadn't asked her to do this, but the doctor said I should. He wanted to have her show off for me.) Sometimes she still blinks really hard to try to tell me something. I still don't understand the language of blink, but I try.

I also took off her restraints one at a time. She has been restrained since she got to the hospital because everyone is afraid that she will pull out her tubes and things. While the restraint was off I put lotion on her arm, made sure the hospital bracelets were not digging into her skin and just let her move a bit. If it were me, I would want to stretch. Mom didn't move much when the restraint was off. I think she probably knew that I was afraid that if she did pull something out - I would be the one to get in trouble. So, we just sat there. Really, neither of us was sitting. I have to stand. (It is a rule I am not fond of in ICU.) Mom was laying down. Mom didn't move much, just held my hand.

Sometimes when I am with her I don't really know what to say. When this first happened I wanted to tell her many, many things. As this is progressing, I think we will have time for those things later. I want to ask her so many things, too. She cannot talk for now, though. And the little day to day things don't really seem to matter much. I just want her to get better.

I had to leave the hospital today about 3:15 to head back down to pick up the kids. I left my mom with Blake Utley. I was glad that he came to visit when he did. Dropping Luke off this morning was difficult for me -- just as hard as leaving Mom at the hospital tonight. I feel torn between the two.

The kids were wonderful when I picked them up!

I am sure you all want to know - Luke did very well at daycare. (Did anyone expect any less from one of my children??) He stayed on schedule and was sweet the entire day. Avery even got to check on him before her nap today. As always she commented "He's such a cutie!"

We spent the afternoon together like always. Luke had a lot to say to both Avery and me. I was happy to hear every gurgle (from Luke) and giggle (from Avery) as she translated from "baby talk" into kid's speak for me.

Daddy went to the hospital this evening. I called a bit ago for an update on Mom and to make sure he was not staying the night. He promised me that he wouldn't. Daddy and I have decided to sleep at home while she is in ICU. We will sleep up there again when she moves to a regular room and is not as well attended.

Mom MAY get her breathing tube out tomorrow. It has been bothering her all day. It is quite a discomfort. She will go for a CAT scan about 3 am to see a clear picture of her brain. Since she had the valve on her brain shunt closed today (skull pressure was normal or below), the doctors wanted to see how her brain handled it. If her brain looks like it can handle the pressure well, they will take out the breathing tube because they will no longer need it.

I feel this could really help Mom.

Thank you all for the calls, blog posts, e-mails, gifts, cards, and prayers! I find that God takes care of us in many ways - and for now, he is using all of you. Thank you all so very much! Please continue to pray for my family.

As for people who will stay with Mom next week during the day - I will get the list together by Wednesday at the latest. I will let everyone know then. Thanks!

The doctor smiled

"Why is this long train taking my time?"  This is what my 3 year old exclaimed this morning as we waited for the 122 car train to go by about 1/2 a mile from her daycare.  I tried to get the kids up, get myself ready, and get the kids to daycare before 8 am.  We actually made it to daycare by 8:30 and after unloading the pack and play, a huge box of diapers, and countless bags - I got in my car to leave at 9:00.  This morning was Luke's first day in daycare.  Luke will stay at a teacher daycare in Midlothian.  Avery is there and she promised to "look in on him" through out the day.  He is only starting 4 days sooner than we thought.  I took pictures of both Avery and Luke this morning.  I know Mom will want to see them when she can.

I didn't get to the hospital as soon as I would have liked.  I really wanted to meet with the doctor.  I got to meet him today shortly before noon.  When I saw him, he was smiling!  He talked to me about how Mom moved her right and left legs and arms.  He said that she had moved her left leg more than he had seen before.  I asked him about her breathing tube and when he wanted to remove it.  He said he would like to leave it in a couple of days.  This gives him an extra option for treatment if her skull pressure (ICP) gets too high.  Today her ICP level is between 0 and 2.  The normal range is between 6 and 15.  Mom's is low.  They have stopped draining any fluid off of her brain and have closed the draining tube.  They are reducing medications and we will wait and see if her ICP levels stay at a good level.  She should be here in ICU for at least a few more days.  Before leaving ICU they will take out the breathing tube and also the shunt in her head.  

Mom is alert today.  She can nod, squeeze hands and even gave Max Harper a "thumbs up!"  It is really nice to be here at the hospital today visiting with her.  Today is so much more hopeful to me than yesterday.  I will update again before I go to sleep tonight.  (Unless I hear any other news.)  For now, I will be here until around 3:30 visiting my mom!

Thanks for your prayers! 

 

One step forward, two steps back

Today Daddy and I disagreed on the word to describe Mom. We all went to church this morning. I would hear Daddy being asked about Mom and Daddy would say, "Debbie is doing great!" or "She is fine."

Somehow, my mom in ICU for 12 days doesn't seem "great" or "fine" to me. If she were "great" or "fine" she wouldn't be in ICU. She would be with us complaining that I made her get up for early service.

Maybe the words would be "Mom is better than she was last Sunday." Last Sunday Mom had a HUGE tumor in her head. The tumor is all gone. Mom is better.

She didn't have a great day today. After so many positive signs yesterday, it was discouraging to me. Mom nodded only once. She would open her eyes sometimes and focus on me. She seemed unable to squeeze my hand or hold up two fingers. One time I asked her to hold up her fingers and Mom just stared at her hands like she wanted to make them move, but couldn't.

Ethan, my husband, thinks that maybe yesterday just wore her out. She needed to rest.

Maybe I will see more tomorrow.

Tomorrow, I will be at the hospital until around 3pm. I will then go home and take care of Luke and Avery. Daddy will mostly be at the hospital in the evening. I am not sure when he is going to be able to get there.

Thank you all for your prayers and thoughts today. I am sure my mom feels your love.

Go Cardinals!

Happy Super Bowl Sunday! Amy asked me (Ethan) to update the blog. She's doing a lot of running around today.  Heidi is flying back to Nashville today and will return next Friday. She's still a little under the weather.  We came to the conclusion last night that since Debbie was much more alert and very stable medically, everyone would get a good night's sleep at home last night.  We are hopeful that a move out of the ICU is on the horizon and obviously there won't be a half dozen medical personnel 10 feet away once she leaves. So, we'll all try to rest up so one person can stay overnight once Debbie is in her own room.

Dick and Amy went up to the ICU this morning and Debbie was sleeping. She had experienced a "coughing fit" and had to have her airway suctioned. This is somewhat understandable since she has been on a respirator for 12 or so days. Afterwards, they gave her some morphine so she was sleeping soundly. Amy came back home to pick up Heidi and they are on their way back up there now. Her ICP was between 9 and 18 through the night and all her vitals are strong. Other than that there isn't much to report. We are all so thankful for all the prayers, visits, cards, food, etc.  through this ordeal. We know our journey isn't over but you all make it more manageable as you travel it with us. Thank you. We'll have another update this evening.