November 30, 2005 - Evening

Well, we didn't plan on posting again today, but the princess had other plans. For the first time in 42 (?) days, Mandy spoke. Within 30 minutes of her respiratory therapist capping her trach (and thus being physically capable of speaking), Mandy responded to Kurt's normal question of "What's wrong baby?" with 3 pretty specific responses. "I'm hot", "My stomach hurts" and "My head hurts". Her voice was quiet and Kurt had to listen closely to hear what she's saying, but considering the fact that she hasn't been able to speak for so long, it's a huge home run. (And perfectly understable complaints given her current physical state!) What an amazing feat from an equally amazing woman. Hoo-rah.

November 30, 2005 - Mid-Morning

Princess was pretty tired last night, but perked back up this morning after some sleep and even tried opening her left eye a little bit for Kurt. Before she had to headed home yesterday (Ron had to leave on Sunday), Brenda and Kurt brushed Amanda's teeth for her with a real tooth brush for the first time in a while (they use a special swab on her every day but it's not quite the same as a real brushing). They probably resembled Lucy/Ethel with the suction and the toothbrush, but it seemed to make the princess feel much better. She even responded to Kurt's request to open her mouth up a bit wider so they could brush her tongue for her too!

She's scheduled to have the feeding tube changed from one directly into her stomach (they call it a "peg") this afternoon. She spends a lot of time reaching up to feel the tube in her nose or pick the tape off of it. The inside of her nose is pretty raw at this point, so we think getting rid of it is going to make her a lot more comfortable. It's an at-bedside procedure though so we don't expect any complications.

We're still on track to try and get her home in the next 4-9 days at this point - go Princess!

November 29, 2005 - Mid-Morning

Mandy had a very good day yesterday. Her activity level came back quite a bit. She even "participated in her own health care" by pulling out her feeding tube in the afternoon. [She's not conscious when she does this, she's just exploring the tubes and wires that don't seem to belong to her body.] Her physical therapist swung her legs over and sat her up in bed during the afternoon and she held her head up nice and high for about 3 minutes before she started flagging a little bit. It looks like the reduction in the medications and the change in the valve pressure really helped her become more alert for us.

We spent some time talking to the case manager and doctors about when she'll be ready to make the trip back to the big D yesterday. Providing she doesn't run into any major set backs, it looks like we'll be bringing her "home" in the next 5 - 10 days. She'll need to go to a skilled nursing facility that has experience with neural injuries and Kurt, Kevin and TAnne are hard at work trying to find the best one for her.

November 28, 2005 - Mid-Morning

The princess has been pretty groggy since her surgery on Friday. We're reminded that although having the shunt put in was relatively less stressful than the whole of everything else she's been through, it's still major surgery and would require a healthy person a few days recovery time. So of course our stressed out princess is going to need at least that long! She's doing a bit better today after an unscheduled CAT scan last night. Her nurse was concerned about her pupil reactivity and called in her neurosurgeon. Everything was fine, they were just being cautious (we're thankful that they're watching her so carefully!). They've now set the shunt to the maximum position so as to assist her brain in recovery. She's running a little fever and her heart rate is a little elevated (not to be unexpected after a surgery) but they're double-checking all of her fluids to make sure that she's not fighting an infection on top of everything else. They gave her a little bit of morphine this morning and she seemed to resting peacefully after the morning visit.

The picture above is the view the princess has from her bed. We put all the pictures and cards that have been sent to her in plain view so that she can see them during her more lucid moments. Brenda insists that she's seen her looking at the wall. How much she's comprehending we're not sure, but she does seem to be looking at them. Someone asked whether they should send cards to the hospital or to the apartment where we're staying. Kurt would prefer that best wishes be sent directly to the hospital. Items may be sent to: Amanda Bethke, MSI Unit, No. 11, Memorial Hospital, 4700 Waters Avenue in Savannah, Ga. Remember that flowers are NOT permitted in the MSI Unit.

We do not know when she'll be coming home yet - we're not going to rush her if she's not ready. In talking to her doctors this morning, she'll need to be a bit more stable (no fevers, more stable heart rate, etc) before it can be considered - so everyone send lots of good, soothing thoughts her way so we can bring her home!

November 27, 2005 - Mid-Morning

The princess was pretty groggy this morning. She didn't feel like responding to us too much today, but since it's only been approximately 48 hours since her surgery we're going to take that all in stride. Her big medical news today is that they downsized her trach this morning. No plans to begin the intermittant caping of the trach yet, but that will be the next steps in her respiratory recovery.

Kurt is researching (and having some folks help him) facilities in Dallas. At this point, she's not ready for rehab nor is she ready to travel, but we're trying to be ready for that day when it comes. From what we've learned, she'll need to be able to participate in her rehab which she is not ready to do yet. One of the indices used by her medical team to measure her level of cognitive function is the Rancho Los Amigos. According to the scale, she's floats somewhere between a 2 and a 3. Most of the rehab facilities would like to see somewhere close to or at a 4 to begin rehab work. We're absolutely not going to move her until she is medically ready for it, so we'll all just have to continue being as patient as can be while she continues the hard work of healing herself.

PS We checked on the flowers, balloons, etc rules and discovered that everything BUT flowers is o.k. Flowers are a no-no in the MSI unit. Visiting hours remain the same.

November 26, 2005 - Late Night

One of the sweetest images that we could hope for is to your left. The room the princess fought for her life, opened her eyes for the first time and gave us hope for 37 days has been left behind. At 8:30PM tonight, they moved the princess to the MSI unit, the long awaited "step-down" unit. It is still critical care, but it is a private room with a window where she can see the sun shine and maybe even the stars once in a while. We're not sure what the rules are yet re: flowers, cards, balloons etc but we'll ask tomorrow. The visiting hours remain the same so we'll be on the same schedule for the intermediate future. Sweet dreams for everyone checking in tonight and our baby girl most of all.

November 26, 2005 - Mid-Morning

Sweet girl was "awake" this morning for the first 30 minutes of the visit. She was pretty groggy (since they gave her morphine for the surgery yesterday, this wasn't unexpected) and was running a slight fever (again, not unexpected based on her busy day yesterday). The orders to move her to the step down unit haven't come yet, but it's early in the day still and we have no reason to believe they won't come soon. We'll do a one-line post later today if the orders come through - it's special enough news to merit it's own announcement!

We neglected to mention her new "flock of seagulls" hairdo that she's sporting compliments of the shunt surgery. (The shunt was inserted into the ventricles in her head). Actually this has been the subject of some debate. Brenda says it's closest to 1980's red-headed "she-bop" Cyndi Lauper, Ron votes for Wendy Williams and Kurt agreed with Brenda for once (of course, the debate isn't over yet). We figure that if anyone is capable of bringing that particular fad back, it's our princess.

November 25, 2005 - Mid-Day

The princess came through the shunt operation with flying colors. Her neurosurgeon said that her ventricles were still swollen and the shunt should help her quite a bit. We were happy to see her continuing to breathe on her own even after the surgery. And to our surprise, she was even "awake" when we were able to check on her afterwards. She seemed pretty tired (understably), but it was good to see her looking back at us and moving her hands and arms around a bit before she drifted back into a nice, deep restful sleep.

The monkey in the picture above has been a star player since the princess has become more active. (Thank you Brinkerheads!) She spends a lot of time squeezing it and moving it around. We believe that it's a been a big comfort to her. You can see that she has quite the grip on it in the picture above!

Should things go as planned for the next 24 hours, the doctor should give orders to move her into the step-down unit. If a bed is available, she could be moved as early as tomorrow. Even the in the hospital, the princess knows how to effectively use a long holiday weekend!

November 24, 2005 - Mid-Morning

Happy Turkey Day! The princess was "awake" when we saw her in the morning visit. We turned on the Macy's Day parade for her and she did watch some of the images on the screen. They are taking her for her first MRI this morning and a CAT scan tomorrow right before she is scheduled to have shunt put in. Because she tends to "wake" up when they move her and the MRI takes about an hour, we expect her to be pretty tired for the rest of the day. Of course, knowing the little one as we do, we wouldn't put it past her to surprise the heck out of us and be awake later either.

And since it's Thanksgiving, we wanted to share some of the things we're thankful for. We're thankful that the princess made it through the darkest days in the first 2 week of her injury and continues to make improvements every day. We're thankful for her amazing husband. His love has been selfless and true - your love for her is an inspiration to us all. We're thankful for the skilled medical team that entrusted us with the truth, allowed us to hope and believe in miracles and opened their hearts to our sweet baby. You never gave up on her and we thank you. We're thankful for Jerry, Diane, little Alex, Jerry's Mom and (step) Dad for treating us like family. You've brought us into your home and hearts and eased our burdens - we love you. We're thankful for the friends and family at home that handle our everyday affairs so that we can truly be present here for the princess. (Special thanks to those who've never even met the princess but are sacrificing your time at home to take us to the airport, send us packages, take care of our babies, and listen to us when we need an ear). We're thankful for our co-workers, you're helping to carry extra load so we can be here with her - thank you. We're thankful for the friends and family that share our love for the princess and post their words of encouragement, their special memories and even give us their pictures. You may not feel like you are doing much, but you have and continue to help carry us through. We're thankful for the friends and family that have never even met the princess but have been touched by our little angel's story and have allowed her life and story to touch you. There is no greater compliment than to have changed another's life for the better. For these things and more, we are grateful this Thanksgiving. We raise our glasses to you all -

November 22, 2005 - Mid-Morning

Not a lot of change from yesterday. Our girl's "awake" periods are increasing in frequency. We should probably explain that Mandy's "awake" periods aren't like when we're "awake". We've learned that comas don't work anything like the movies. Like you can sleep at various "depth" levels, you can be unconscious/conscious on various levels. Mandy is showing all the signs of pre-conciousness and appears "awake" sometimes (eyes open, some levels of limited responsiveness, repetitive head swings from side to side, hand/arm/leg/foot movements), but she isn't "awake" in the sense of conscious. But all the indicators that it's coming and should hopefully arrive soon are there. Her eyes were open briefly for us this morning, but they had tired her out with a linen change and bath before we got there, so she fell right back to "sleep" very quickly. She's moving in the right direction though, so we're all happy if somewhat impatient!

PS If you don't know the pointy eared fella above, that's Chris O. Close friend of the princess and provider of most of the pics that have been posted here on the blog. When we asked him for pics, he generously went through all of his archives and pulled out tons of pics that made us giggle and smile. Thanks for sharing Chris!

November 22, 2005 - Mid-Morning

Joyful news! After her CAT scan yesterday, our princess was tired all day and we didn't get to see her open her pretty eyes for the remainder of the day, but she more than made up for it with today's progress. Her physical therapist, Mike happened to visit during the 9 - 10 visit this morning and since she had her eyes open (for the first time for Ron), her PT decided to try sitting her up. Mandy eyed both Mike and his assistant up as they pulled down the bed rails and began moving her monkey and princess pillow to the side. We all then watched in amazement as Mike (her PT) and his PT student turned her sideways in her bed and sat her up. They supported her back slightly, but she held her head up all on her own for several minutes. Even Mike was impressed with how well she did sitting up for the first time in 30 days. When she caught Brenda's eye, Brenda told her, "Don't worry, you can't talk yet" and Mandy responded by shaking her head no. When they layed her back in her bed, we all gave her a big, happy round of applause before she fell right back asleep. The best news is that now that she's sat up once, they'll continue working on sitting up and helping her get stronger and stronger.

On the medical side of things, she's now gone more than 48 hours breathing on her own. She is scheduled to have the shunt put in on Friday. We're not sure how long the recovery period is, but we believe that it will be (relatively) short. We hope that we'll be looking at bringing her home not much longer after that! Oh joyful day!

November 21, 2005 - Mid-Morning

Congratulations are in order for the little one. As of 2:30 this morning, she had gone 24 hours breathing on her own! Her numbers have been so good, they're letting her continue to breathe on her own as long as she doesn't show signs of distress. We're waiting to talk to the neurosurgeon about where we go from here. We believe that he's going to want to put the shunt in before he releases her to step down and she needs to be fever free for 24 hours before they can do the procedure.

In the meantime, she was sleepy this morning but woke up a little while. She even managed to stick her tongue out right away when asked (it normally take a bit more cajoling than it took this morning). We've discovered that her most active period tends to be the 4 to 6 PM visit, so we're excited to see what she has in store for this afternoon.

A few people have asked us what we'll be doing for Thanksgiving, so we thought that we'd share that our Savannah angels Jerry and Diane (who not only so generously gave us their apartment and car) but are even feeding us home cooked food whenever they can! They've invited us to Thanksgiving dinner and Kurt is excited about the fried turkey that's been promised. We're all looking forward to having dinner by the water. Mandy's slow but steady improvement has given us much to be thankful for this year.

November 20, 2005 - Mid-Morning

Our little fish continues to breath out of her man-made gill like a champ. She is currently on a 6/4 schedule (6 hours off the respirator, 4 hours of rest with the respirator and then 6 off again). Her numbers are fantastic and we expect them to continue upping the off times as the day progresses.

Brenda returned yesterday and was overjoyed to see Mandy with her eye(s) open (the left eye is still a little swollen and opens only slightly and with effort). She insists that for the first time, Mandy actually appeared to "see" her and focus on her as she moved about the room in addition to squeezing her hand. We also held up the Brinker monkey for her and she appeared to focus on and see it before she drifted back to sleep. This doesn't qualify as being "awake" but these "aware" periods are good signs and hopefully good indicators of things to come.

November 19, 2005 - Mid-Morning

Little miss continued working on that breathing. She's resting right now after a full 7.5 hours off respirator! She gets a 6 hour respite and then she's going to be right back at it strengthening those lungs and working towards getting back to Dallas.

TAnn headed home this morning and received ample reward for the visit with a (cajoled) royal nod from the Princess. Kevin is expected home late this afternoon and Brenda arrived with fresh nail polish in hand this morning. She's looking forward to seeing our princess open her eyes (which Kurt has assured her happens with fair regularity now)!

November 18, 2005 - Mid-Morning

The little stinker surprised us all again yesterday. They did a trial run of having her breathe on her own. The expectation was that she would go anywhere from 30 minutes to 4 hours. Since she's been on the ventilator for nearly a month, we expected to be happy with an hour or so of solo breathing. She did nearly the entire 4 hours before her heart rate and blood pressure began to rise and show some levels of fatigue! They will continue capping the ventilator and expanding her solo breathing times until she can do at least 24 hours in one stretch. She's currently on another 4 hour stretch this morning. She had another CAT scan this morning but results aren't back yet. The fluid is continuing to drain at a good rate. She did open her eyes briefly for TAnn this morning, but is now resting comfortably.

Should she continue to improve at the current pace and not incur any major set backs, the team hopes to send her back to Dallas in the next 2 weeks. Once in Dallas she will go to a neurological rehabilitative unit (depending on her status, she may need to go to an intermediary step down unit there first). We do not expect her to be "awake" before she goes home to Dallas. We hope to see her continue to become more and more reactive and interactive with time and rehabilitation, but we all have to continue being patient and allow her to move at a pace that she and her medical staff is comfortable with.

She has lots of visitors this week rooting her on. TAnn is visiting with her today bringing all the Dallas love. Brenda returns tomorrow and Ron on Monday to celebrate the big turkey day with the Princess and her consort. Kevin has reluctantly headed home to deal with work but is comforted knowing that before long, Mandy should be clicking her ruby slippers together and making her way home as well.

November 17, 2005 - Mid-Morning

It's been another big medical day today for our girl. She had a CAT scan early this morning and the results were mixed, but good overall. The swelling has definitely reduced and nearly back to normal (which is good). However, her ventricles (the spaces in her brain) have swollen with spinal fluid. Given that there was a drain in her head for nearly a month removing excess fluid, it's not surprising that her body is producing more than is necessary now that the drain has been removed. However, any excess fluid isn't a great thing to have in your brain. Therefore, they installed a lumbar drain (lower part of her back) to help her remove the excess fluids. If she is able to readjust her spinal fluid production naturally, they'll eventually remove this drain. If not, they will need to install a permanent shunt that will assist her in draining the excess fluid going forward (it's very small and shouldn't impede her normal day to day movements). We've been assured by her medical team that this is all normal and a potential part of the healing process. It also helps to explain why she hasn't been quite as active as might have been otherwise expected for the past few days. We're going to take this all in stride as another one of the slight bumps that are inevitable in the healing process. Mandy has always liked taking the detours every now and then anyway.

November 16, 2005 - Mid-Morning

Mandy is opening her eyes with some frequency this morning. She is moving her eyes back and forth. We're still not sure she's seeing anything and we wouldn't say that she is concious yet, but her overall activity levels are increasing. She appears to be listening to Kurt's voice during her more conscious periods. Her eyes are still closed more than they're open and she's not trying to talk yet, but we're thrilled to see the progression.

They began weaning her off the respirator last night. They turned the dial down so that she is now responsible for intitiating the breaths. She appears to be adapting to it well. We've been told that it takes 1 - 2 weeks to completely wean someone off the respirator and a bit longer to have the trach tube removed. Her neurosurgeon stopped by last night and noted that her response to voice commands is improving. They have an opthamologist coming to take a look at her left eye (it still has some swelling) and they want to ensure that they're doing everything they need to do in order to ensure that heals to the highest degree possible.

Here's to another day of continued progression back to waiting arms of her friends and family!

November 15, 2005 - Mid-Morning

Things continue to look up. Mandy's neurosurgeon decided to forgo the CAT scan yesterday (because her numbers were so good). He removed the bolt and took our girl off of all her medications. No more alien antennae! He's left a standing order for some morphine just in case she needs it, but she seems to be doing really well without any painkillers right now. That leaves her with the ventilator, the IV to keep her hydrated and her feeding tube since she's not awake enough yet to eat or drink.

To leave ICU and move to the step down unit, she's going to need to be able to breathe by herself without the ventilator for a full 24 hours so we expect them to begin capping the ventilator and having her breathe independently for a few hours at a time until she's worked her way up to the full 24 hours. We're not sure how long it will take to wean her off the ventilator. It could be a few weeks. Once she's in the step-down unit, we'll be able to look at timing on moving her to a rehabilitative facility in Dallas. That's probably still weeks away. (The people in Savannah have been a team of angels propping us all up, but there's nothing like home is there?)

November 14, 2005 - Mid-Morning

This was a big medical day for our girl. They turned off the drain this morning and are planning on taking her for another CAT scan this afternoon. Should that go well, they will be removing the 2nd and last bolt head from her head tomorrow. (No more antennae!) The chest tube should also be removed at that time. They're gradually reducing the number of tubes and holes they had to put in our girl to help make her well - thank goodness!

Between the CAT scan and the minor surgical procedures to remove tubes etc., they'll be moving her around a bit so we may not be able to expect any new "swimming near the surface" movements - but it's all in the progression forward to helping her get back on her feet again so we'll cheer it on anyway. Go Princess!

November 13, 2005 - Mid-Morning

Our girl was pretty tuckered out this morning after having her fingers and toes repainted yesterday. She attempted to open her eyes for Brenda before she left (by squeezing her eyes shut even more). She did manage to get one eye open a little bit before she promptly fell back into a deeper sleep. We were excited to see her also make 2 moves that were classic Mandy: she sucked in her lips and pressed her lips together (like she does when she is refreshing her lipstick) and rubbed her thumb and middle finger together in the repetitive way she does when she's thinking about something. She is still sleeping very deeply and her "swimming near the surface" times are short but sweet. Her numbers remain stable and her rash is gradually decreasing (looks like the change in meds is helping). Here's to another week of continued improvement!

November 12, 2005 - Mid-Morning

Brenda drove back down to Savannah this weekend to see all of the excitement for herself and was amazed to see how much more active and interactive the princess appeared to be in only 7 days. She is moving her arms and legs and lifts her hands frequently. She is moving her head and gave us a all a few nice yawns. When reading her the blog comments, Brenda took off her Circle bracelet and placed it in Mandy's hand explaining to her that lots of people were wearing them and thinking of her. She appeared to attempt to hold onto the bracelet. She didn't open her eyes and we still don't know how much she's comprehending, but we're continuing to assume that she understands and comprehends it all until proven otherwise.

She looks better with one less bolt. She has a slight rash that they believe is caused by her dilantin (anti-seizure medication given to anyone with serious head trauma) so they are switching her to a different anti-seizure medication. They'd like to eliminate or reduce the rash prior to closing the drain to the bolt. They are gradually attempting to wean her off of all her medications. The neurogsurgeon said that she's not out of the woods yet but she is continually progressing in the right direction. We are all caustiously optimistic and looking forward to the good surprises the princess must have in store for us all.

November 11, 2005 - Mid-Morning

Not much to report this morning. The princess was having her bedding changed this morning so we didn't get to spend too much time with her. She gave us a nice yawn during the visit though and it was nice to see her looking peaceful and asleep. They're beginning to lie her back in a more prone position (she's been in a sort of half-sit to assist her in keeping the ICP's low) and rolling her from side to side and she seems to be enjoying the change(s) in position. Her most active periods seem to be in the 4-6 time slot, so we look forward to seeing if she has any new surprises for us tonight.

November 10, 2005 - Mid-Afternoon

It's nice to have continued good news to report. Around mid-day today, Mandy attempted to sit up in her bed for her nurse Marianne. (She hasn't used those muscles in a while, so it wasn't a full sit-up, but she did make the attempt!) She continues to oblige the command of "stick out your tongue" and follow the sound of voices with turns of her head. (They don't think she's seeing anything yet because her eyes are still so swollen, but her eyes are now open for the brief periods when she's awake). When Marianne finished "brushing her teeth" and removed the "toothbrush", Mandy turned her head and attempted to grab back at the brush after it had been taken away. (True to form of course, we've never known her to like having things taken away from her until she's good and done with them...)

They are reducing the drainage level of the bolt in the first steps towards removing the last bolt and have warned us that her waking times (which are 15 minutes at a time max and tend to leave our girl pretty tuckered out) may diminish slightly as she re-adjusts to taking on more of these functions herself. But for right now, we'll take all the eye opening, tooth brush grabbing, tongue sticking outing, squirming around we can get.

November 10, 2005 - Mid-Morning

The princess continues to keep up the activity level and surprise all of us. Last night she had her most active period yet. She appeared to be opening her eyes and looking around, sometimes at Kevin and sometimes at Kurt. (It's difficult to say she's actually seeing anything at this point given the morphine, the swelling around her optic nerves and the fact that she's not truly "awake" yet. Think of this more like moving around in your sleep.) At one point, Kurt thought she was choking because she was making sounds in the back of her throat. After getting a nurse, he learned she was just trying to talk! (She cannot talk yet because she is still on the respirator.) In the words of Kristen (Reggie's daughter) "she was really trying hard to say something, so her little lips were moving and moving!! Whatever it was, it was obviously of urgent importance to Mandy." We can only imagine what she trying to tell us. She was also moving her arms a lot, and on a couple of occasions her entire body moved as if she was trying to shift her position in bed.

She was pretty tuckered out by that movement in early evening yesterday and was in deep sleep for the night visit and more subdued this morning. [Although she did open her eyes half-mast when Kurt came in the room and greeted her. She then nodded back off while he was talking to her.] We hope she was just resting up for the next big push. The doctors have told us that they are going to begin weaning her off the drain in her head (based on her ICP's remaining stable). This is the first step in removing the last bolt from her head. She's making progress that we could only dream about only this time last week. Go Princess!

November 9, 2005 - Mid-Morning

Lots of good and new things to report this morning. The biggest news is that when they took the princess for her CAT scan this morning and were moving her around, she opened her eyes. Now, it doesn't means she "awake" (because she's not) and she can't see anything, but opening your eyes (even briefly) in response to stimuli is supposed to be a Very Good sign. Her left pupil is also (finally!) reactive now. It's sluggish, but reactive. As well, her neurosurgeon (after reviewing the CAT scan) reported that the swelling is showing slight improvement. And finally, they removed the left bolt in her head so she only has one antennae left. Our girl has been working very hard! Thanks to everyone that continues to post their love and best wishes for her here - it's all working!

November 8, 2005 - Mid-Morning

Our girl continues to hold steady this morning. They are now letting her listen to CD's. Kurt left the stack of CD's that the Brinkerheads were so kind as to bring so that her nurses could change them out throughout the day. (Thank you Marianne! You guys are our heroes!) He left the Bare Naked Ladies, "If I Had A Million Dollars" playing for her when he left the last visit period. It's been sort of the theme song that we kept humming and singing to her during the first two weeks (you know the last line, "I would buy you a monkey? Haven't you always wanted a mon-kee?").

They are planning on taking her for another CAT scan tomorrow morning so that they can see what's going on in our girl's head. Even more exciting is that they plan on removing one of the 2 bolts in her head tomorrow! They're also discussing moving the feeding tube directly to her stomach (versus through her nose) as it will be better for the health of her throat etc.

We've attached a picture of the tiara that her wonderful team in the hospital found for her. She couldn't ask for a better royal court!

November 7, 2005 - Evening

There IS joy in Mudville tonight! This evening as our nurse Heather (her nurse on her first day in the ICU) was talking to our girl (telling her what she was doing) she thought that Amanda was turning her head to listen to her. So she stopped and asked her if she was trying to look at her and our princess nodded her head. Not to be outdone, another nurse Joy (the bringer of the tiara) than asked her to stick out her tongue. She did so. [You can just imagine it can't you?] Unfortunately for us, she was pretty tuckered out by the time Kurt got there for visiting and she wasn't as responsive by that time. But we're all celebrating "purposeful movement" and "responses to commands" and hoping that we'll see it later when she's more rested. We're trying to be cautious since these head injuries seem to move forwards and backwards at a sometimes unpredictable pace and we still don't know the extent of brain injury, but tonight we're going to celebrate this big step and call it an amandericle.

November 7, 2005 - Mid-Morning

The princess had a restful night after a little procedure late yesterday afternoon. When her doctor was changing her arterial line (they have to change them every few days to prevent infection etc), he left her in the sitting position for her comfort. As a result, he accidentally punctured a sac around her lung creating an air pocket. (It was an accident and he was trying to make things easier for her. He felt terrible about it.) The "air pocket" would be something that would make healthy, concious people uncomfortable but we'd be able to absorb in our system. Because she has so many other things that she's fighting right now, they decided to insert a chest tube for the next few days to ease the discomfort and eliminate the "pocket". The silver lining in this little episode is that the "air pocket" appeared to make her uncomfortable. This is good because it shows that she is aware enough to process and react (even subtly) to discomfort.

She was back to resting more comfortably this morning. Her ICPs bounced between the single digits and teens (the lower the better, with the ideal being below 20). We believe that this will primarily be a "waiting" week while the swelling continues to diminish and her body heals.

November 6, 2005 - Mid-Morning

Our girl continues to hang in there. She ran a fever of 104 degrees last night (we're discovering that fevers are a constant theme with anyone in the ICU), but they were able to bring it down with Tylenol and cold blankets. Her fever is back to normal ranges this morning. Her last reading of phenobarbital in her system is slightly under 2. We hope to see it completely leave her system sometime within the early part of the coming week. All of her other numbers and her physical responses remain about the same, with no increase or decrease. Until the swelling is fully eliminated from her brain, we may not be able to ask for more movement than we currently receive. There just isn't enough known about the brain to determine how she'll progress, but we know that making it this far has been a miracle. Keep cashing in those chips for favors owed everyone and we'll update again tomorrow.

November 5, 2005 - Mid-Morning

The CAT scan showed some slight improvement yesterday, but her brain tissue still has swelling. Her left pupil remains non-reactive (but has slightly diminished in size) and the right pupil is reactive but sluggish. Her neurosurgeon believes that he has seen have some "localization" movement. (for example, pinching the right arm causes the right arm to react vs pinching the right arm causing the entire body to pull back). We haven't seen any purposeful movement yet (for example, pinching the right arm and the left arm reaches over to pinch the nurse back). We are reminded that this is the beginning of the longest phase of her injury. Mandy is going to set the pace and we're just going to have to be patient and let her set the pace for the rest of us.

In the meantime, Ron and Brenda are reluctantly headed home with plans to regroup on the home front and return mid-month (providing she continues to remain stable). It's not easy to leave the battlefront when you're so attached to the prize. However, they take comfort in leaving Kurt and Amanda in Kevin's (Kurt's brother) capable and steady hands. Brenda and Ron will continue to update the blog and field the phone calls from home so as to allow Kurt the required down time he needs.

She's not yet at a stage where's she's interactive with visitors and seeing her in the ICU can be upsetting. However, a few people have expressed a desire to see her. Please bear in mind, that as much as visits and good wishes are appreciated, visits can be exhausting to both Kurt and Amanda. You don't have to visit to show your love - you'll be needed in the future back in Texas when we believe our girl goes home and begins recouperation. However, if you feel like you need to see her before then, please coordinate your visit through Kurt at akbethke@comcast.net.

November 4, 2005 - Mid-Morning

Our princess continues to increase her activity level. At the nurse's direction, Kurt wiggled her feeding tube and the little one squinched up her face and pulled back from him. We can't describe the exhiliration her little squinching gave us after spending 2 weeks of near non-responsiveness. TAnn and Brenda were also both lucky enough to feel her squeeze (not a true squeeze, but a bit of finger pressure) while holding her hands. [TAnn felt it this morning, Brenda felt it last night]. She's not squeezing on command yet, but we're hoping that's just around the corner. We are optimistic but realize that we still don't know the extent of damage her brain suffered. It's too early to tell whether the interaction is voluntary or involuntary. She's scheduled for another CAT scan late this morning so we hope we have more to share tomorrow morning.

PS After weeks of telling the nurses of what a little "princess" our girl was, her wonderful nursing team found her a little gold tiara and surprised us with it yesterday. Our girl is really holding court in the ICU now!

November 3, 2005 - Mid-Morning

Our little princess gave us a nice little gift this morning. The nurse said that she pinched our girl's arm this morning and she curled her fingers in response. She wasn't able to respond to similar stimuli on her legs yet. She also received some blood this morning as her hemoglobin count was a low. Otherwise, her numbers remain stable, her black eyes are almost history and she is hanging tough like the fiery red head she is. Hoo rah.

November 2, 2005 - Mid-Afternoon

Just a quick one to let everyone know that the little one went through her surgery with no problems. The screen is in place and the cold catheter has been removed. (They will not reinsert it if she is able to maintain good body temperatures without it.) Her ICP's stayed in a good range despite the field trip to the OR and back again. Otherwise, her condition remains unchanged and stable. Some of the Brinkerheads (Lori, Terri, and Jess) arrived and visited with our girl this morning. They brought with them all of the hugs and best wishes sent by those holding down the fort at home. As always much thanks and love from the front line to those supporting us all back home.

November 2, 2005 - Mid-Morning

Not much to add this morning. Our girl's numbers remained in the normal range. She's still hooked up to a plethera of drugs to help her heal and there's no time table on removing them at this stage. She has a blod clot in her leg and they are taking her into surgery this morning to install a "screen" to prevent the blod clot from travelling to her lungs. As she stablizes, there will not be as much to add in posts. We'll post at least once a day (more frequently if there's a change). If there's no new post, assume that there is no significant change from the daily post. Thanks to everyone for keeping the faith in the our princess.

November 1, 2005 - Mid-Morning

No changes for our girl today. Her numbers are about the same and we're taking the view right now that no news is good news and continuing the vigil. Our fellow trench members showed us how to post pics on the blog, so we thought that during this wait period, we'd show the amandaspirit and share some of our favorite pics of our girl with our posts - everyone think good thoughts today!