May 9, 2013 - Moving to Austin & Rehab @ Dell

May 9, 2013 - Day 33

9:43 AM:

This is the card that Brody had picked out for Bella when she got to go home the first time. Inside it says 'tackle it one day at a time'.

2:20 PM
Been sitting on southbound 35 @183 behind the ambulance for 36 minutes now. I understand that Obama is important but ARE YOU KIDDING ME?!!!

3:49 PM:
Thanks to Austin's finest, we finally got a police escort to get us off of 35 after 45 minutes of sitting absolutely still. Police let me follow - sirens blaring on both the police car & ambulance & my hazards going. We jumped the curb to the feeder, ran a couple of red lights, drove in the opposite lane of traffic to get through one intersection. It was both cool & scary! We are finally checked in at dell & going to order lunch. 
Oh and the reason for the delay? Mr Obama - he shut down the freeway - didn't reroute traffic, just shut it down between exits for 5 hours with no warning and no way for others to get off the freeway.

6:58 PM:
I need an adult doctor that can see me first thing tomorrow. Made it to Austin and I have a 101.5 temp :(
They're kicking me out until I'm fever free for 24hours. 
Any suggestions?

10:18 PM:
Doctor says I have a bacterial infection. She didn't swab my throat or nose but said my nose looks infected and since I've been in the hospital so long, it's highly likely. She gave me an antibiotic. Seriously, I cannot afford to be sick!! I just pray I have not already infected Bella. Her body cannot handle fighting something else. So I'm staying away from her until I'm all better. Please God, Please don't let Bella get sicker!

May 8, 2013 - Day 32

May 8, 2013 - Day 32

11:57 AM:
Quick prayers for the insurance idiots to get over themselves! They are talking about adding an 8th plex treatment in Austin to prove medical necessity for the transfer to Dell. I'm a little ticked off that they would unnecessarily make her go through this again just to give them a reason to pay for rehab in Austin. Nurse did say that more plex would actually be a good thing but she's not the one getting poked and drained every 2 days! 

2:59 PM:
God listened to my begging. Maybe it was my statement saying I trust you, God, and I know this will work out. Funny how things just fall into line when you give them over to Him. Bella will get her cath out this afternoon. No 8th plex needed or required by anyone. She's been accepted & approved at Dell and will transfer via ambulance tomorrow @8 Am. Thank you God!

11:41 PM
So much happened today that it is hard to believe that it started with Bella’s 7th and FINAL plex treatment! We were up and ready for PT at 8:30 but plex showed up at 8:45 instead. Bella did very well with this treatment and never did get nauseous. The neuro doc (not Dr Castro this week) had come in just before the plex treatment started and told us that Bella might have to keep her cath in and have an 8th treatment in Austin in order to meet medical necessity for the transfer to Dell. This is where my extreme stress began (as if my stress level was not already extreme). I talked to a therapist at Dell and the case manager here and neither woman mentioned a need for an 8th plex. Neither sounded very optimistic about getting us in Dell tomorrow either. Anyway, as you noticed from my earlier post it has all worked out and Bella will be transferred to Dell Children’s via ambulance tomorrow. We are set for 8 AM but if any kind of emergency comes up, we will get bumped to later in the day. Brian flew up to Dallas tonight so he will ride in the ambulance with Bella and I’ll follow in my car. God is great and He does answer prayers! I just had to release this worry to Him.
Bella never did get her PT session in today but had OT as scheduled. She colored a Mother’s Day card for me while standing and made tissue flowers.
They finally took her cath out at about 5:30. The most painful part of that process was pulling the tape off of Bella’s sensitive skin. She now has a gauze covering the hole and more tape. Unfortunately, she will always have a scar where the vas cath was placed. Hopefully it will become less noticeable as she grows.

While Bella still seems stronger, she has been in so much pain the last 3 days that I must admit I’m very concerned. The doctors are not worried so I guess I shouldn’t be either. Her back hurts so badly that she has trouble pushing through her therapy sessions sometimes. She did so awesome on Sunday and all the days since then have been comparatively disappointing. I hope the transfer to Austin will give her a new motivation and that the rehab center there will help her get stronger faster.

The nurses are all celebrating Bella’s release tomorrow. It’s so cool how excited they get for her to move on. I wish we could take some of them with us – there are some really amazing people here.

This song is so appropriate for today: “I give it to You. I give it to You. All my worries. All my burdens. I give it to You.” – Martina McBride

May 7, 2013 - Day 31

May 7, 2013 - Day 31

Since today was not a plex day, Bella got to sleep in a little bit. In spite of that, she was in a lot of pain and was not ready for PT at 10:30. She had a good attitude about it and made every effort but had to take a lot of breaks. PT found the perfect cure for Bella’s aching back and sat her on an exercise ball. While on the ball, she practiced toe taps and we played volleyball with a beach ball. Since I’m not getting my workouts in anymore, I took advantage of lunging for the volleyball when I had to retrieve it for Bella.
I forgot to mention this yesterday but we’re pretty sure Bella’s double vision is cured! She hasn’t needed her patch the last 2 days and the neuro doc that examined her yesterday did a pretty thorough eye exam with her iPhone. It was the coolest thing! She had both eye charts and the color tests. She said Bella has 20/20 vision. Woohoo!

We’ve been having some difficulties getting the right people at Dell Children’s to talk to our case manager. I’m not sure how hard our case manager was trying before yesterday. Brian toured Dell today and found out that because they just opened the new tower, they are busy transferring the patients that are already inpatient and have not been admitting new patients. Now that they know how serious and interested we are, I’m hoping that they will be able to work things out. Doctors are still talking about Thursday or Friday but all of that depends on Dell and insurance.

I managed to escape for an hour today but had to leave Bella alone. I really needed to get out – needed some more k-cups, some vegetables, Bella’s end of plex and surviving EMG gift AND I needed a good cry. What Bella is going through just sucks! Being in the hospital for one month today (minus 4 home free days) sucks! I miss Brian, Faith and Brody terribly and I’m not sleeping well. Mainly my heart just hearts so much for Bella that sometimes I have to allow myself a little breakdown so that I can be strong for her again.
Fortunately while I was out Bella’s good friend Avery stopped by for a visit. Bella really needed to see her friend, and I came back to a happy rather than frustrated child.

During Bella’s OT session, she painted a ceiling tile. We had decided that Bella would leave her mark on this hospital since we've spent so long here. OT had to make it difficult so she put weights on Bella’s wrists and made her sit on the rubber disk while she painted. Bella is a perfectionist and loves art so she was not pleased with the results. She got pretty frustrated with herself in the middle of the session but then took a break and finished strong. I think her tile is awesome (will post a pic in a few minutes)!
We were able to go outside for a little sunshine before they locked us in tonight. Security closes the doors to the courtyard at 6 every night. With Bella’s busy schedule, it is hard to get outside before 6. I think it helped her a lot to get outside and breathe some fresh air and it helped me to thaw out. Not sure if I've mentioned this but one symptom of GBS is being very warm all the time. Hospitals are already cold but then we keep the air all the way down and I shiver all day. Bella, however, is always hot.

Tomorrow is the final plex treatment and then Bella will get her vas cath out! She’s nervous that it will hurt and I must admit it scares me too but I cannot wait for her to get rid of that thing!

“Even on my weakest days, I get a little bit stronger”

May 6, 2013 - Day 30

May 6, 2013 - Day 30

Plex days are hard days. Apparently when they extended Bella’s plex to a 6th and 7th treatment, they did not extend the order for the IV team to do the early morning lab work. You should have heard Bella question the poor nurse who came in to draw her blood! She was sound asleep but that didn’t matter. When that nurse tried to stick her without first numbing the area, Bella whined loudly and asked if she was from the IV team. We sent her away and said only the IV team is allowed to poke her. About 45 minutes later, a girl from the IV team did come in but unfortunately her j-tip (the numbing rocket they use) didn’t work well enough because Bella still felt the poke. Poor baby has so many bruises on her hands and arms from all the needle pricks!
We got up and ready for her PT session. Bella was ready to work today – very motivated from yesterday I think. PT put her on the stationary bike first. Bella did about 2 minutes there and did really well but was getting very tired at the end of the 2 minutes. She walked with the walker from the bike over to the mat (about 30 steps or so). PT put ankle weights on her and attempted to play standing kick ball with Bella holding onto the parallel bars. The ankle weights made that a bit too hard plus I think Bella’s muscles were fatigued from yesterday. She sat in her wheelchair and played kickball instead (with the ankle weights on). PT wanted Bella to do some work on her hands and knees on the mat but Bella was not able to support herself that way. Instead she laid on her stomach, supported herself on her elbows and hung plastic monkeys from a little plastic tree. I’d say today’s session was about half as successful as yesterday’s. She tired out so quickly and we hadn’t even gotten to plex at that point!
Bella is getting very good at rolling herself around in her wheelchair. She finally has enough upper body strength to last about halfway from the room to the therapy gym on the same floor but in a different tower. And she seems to enjoy having some control in her chair to roll herself around the room.
The plex nurse (another new one today) came at about 11:30. We were expecting her between 9:30 and 10. This treatment is the sort of thing that you dread yet want to get over with so we were not happy about waiting. However, Bella handled it like a pro once again. She didn’t get sick at all today – just ate her lunch and watched The Tooth Fairy. Brian and Bella had discovered that having peppermints on hand during the last few minutes of plex is essential. When they flush the vas cath after stopping the treatment, Bella says the taste is horrible. I don’t quite understand how that causes a taste in her mouth but I believe her. So peppermints help not only with the taste but also with the nausea that tends to be the worst at the end of the treatment.
We got a visit from the clowns again today. One (Dr. Knock Knock) we’ve seen multiple times but the other was new. They sang her a song and brought a big smile to her face. We haven’t seen the therapy dogs yet this visit. I really hope they return because Bella misses Zuzu a lot.
By the time Bella had OT this afternoon, she was completely worn out. She really tried very hard to do the exercises. We did the same bubble popping again today – this time I blew the bubbles and this time Bella had weights on her arms. We were going to try to do more exercises but Bella was in so much pain. Her back hurt her very badly all afternoon and her balance while sitting was not good. I think we only got about 30 minutes of actual work in OT.
Bella finally decided what she wants as reward for that tortuous EMG - an iPod touch 5. I’ve decided to sneak out and get one and give it to her as an “I’m done with plex!” gift Wednesday afternoon. It’s the sneaking out to get it part that will be toughest.
We hit a major low this evening. Tonight was the first time during this visit that Bella has cried because she’s homesick (or I have a worse memory than I think). I think it’s a good thing that she feels well enough physically to be sad about being in the hospital. That’s definitely an improvement. We both have the hospital blues. I’m depressed that the rest of our family started new schools and job today in another city that seems incredibly far away right now. I’m happy that Faith had an awesome first day and Brody already has 2 new friends and enjoyed his school so much that Daddy picked him up too early. I’m sad that I wasn’t there to see their faces and hear about all of it face to face rather than on the phone. And it’s only Monday L

Finally, my song quote for today: “God is great but sometimes life ain’t good. And when I pray, it doesn’t always turn out like I think it should but I do it anyway.”

May 5, 2013 - Rockstar PT

May 5, 2013 - Day 29

From Brian  @12:22 PM:
Bella had a HUGE breakthrough today. Yesterday at PT she was only able to take 2 steps. Today she walked forward, sideways and backwards on the parallel bars with assistance of course. She even did a partial back lunge just to show off. She then transferred to a walker and was able to walk with assistance through the halls. Her PT capped her at 300 steps but Bella snuck in 4 bonus steps before her PT made her stop. Bella wanted to walk back to the room. Her PT made her stop concerned that she would be overly fatigued and sore later. Great day, it's almost like she is a whole new person overnight. God is great!

9:40 PM:

What a difference a day makes! As you know if you saw Brian's update earlier, Bella had an AWESOME PT session! She walked along the parallel bars; practiced standing, reaching and throwing; walked sideways, backwards and even attempted a lunge. She then walked with a walker and some support from her therapist for 250 feet! And PT said Bella was supporting about 75% of her own weight. So incrediblyamazing since two days ago she could not get her hips underneath her enough to stand up straight and yesterday she wasn't able to take 2 steps!
Grandma Diane brought Bella Subway for lunch and sat with her while I packed for a week at the hospital and Brian, Faith & Brody packed for a week in Austin. This week is going to be tough emotionally on all of us.
Bella's afternoon OT session went well too. Her OT said Bella's arm strength is really good but she needs to work on her hand strength. Today Bella popped bubbles with cymbals while wearing weights on her arms. She then spent the rest of the hour playing with putty and beads (pushing the beads into the putty and then getting them out). Even after OT returned Bella to her room, she continued to play with the beads and putty. I guess that will really help to work her fingers though it is an odd thing to me.
She and I watched ET - Bella's first time to see it. I enjoyed watching her get so into the movie and enjoyed the break from the incessant repeats of Disney channels shows. I can't stand Shake It Up or Austin & Ally! In the hospital we only have the main Disney channel, not the 6 versions we have at home.
Bella had told me a few days ago that she was craving one of my cookie cakes, specifically with chocolate icing. Since she had such an awesome day, I made her a cake. I'll post that pic in a minute.
Tomorrow morning, we will get disturbed dark and early (long before the sun) for a blood draw then 8:30 PT and 9:30 plex. I pray the plex goes better than it did yesterday!

May 4, 2013 - 1 Good 1 Bad

May 4, 2013 - Day 28

5:13 PM:
Brian and I are not fit for being out in public right now. I went through the chick-fil-a drive thru and 30 seconds after I had asked the nice girl for Polynesian sauce & gotten my food & card back from her I asked her if she had given me my card back. She looked at me funny and said yes. Then I asked if I had asked her for Polynesiansauce. She looked at me like I was crazy (apparently I am) and said yes, it's in the bag I just gave you.
Then later at the hospital, Brian walked into the little kitchen to heat up some food for Bella. There was a lady in there heating up food but he just walked in & opened the microwave without any regard for her food.
I'm sorry. There is just no help for us.

11:04 PM:
1 good day then 1 bad day. Bella woke up grumpy today and had trouble getting over that all day. She got really sick during her plex treatment and stayed nauseous for several hours afterward. She had 2 hours straight of PT/OT this afternoon. PT wasn't going very well until Faith and Brody arrived. Bella seemed to need her brother and sister for motivation. They were only able to stay for a couple of hours and Bella wasn't really up to doing much or talking much.
She did pretty well in her therapies. She shot baskets again but 2 hours straight of therapy is a bit much - especially on a plex day.
She had such a headache and so much neck pain this afternoon. I pray she sleeps well tonight and tomorrow is a better day!

May 3, 2013 - The Band Perry

May 3, 2013 - Day 27

They only sang 2 songs but they were awesome! And so charming

Today was a good day. There was some miscommunication about Bella’s PT so we were up and (almost) ready to go at 8 and PT didn’t show. She had told nurses time would be 8 on plex days and 10:30 on non-plex days. Oh well! When she did have PT, her session went well. She practiced standing up (with assistance of course) and even stood at a table and played Connect 4. She took some rest breaks but this will still a huge improvement.
We saw The Band Perry early this afternoon! They had a mini road crew set up their instruments and stage and test the mics. They only performed 2 songs (Hip to My Heart and All My Life – my fave of theirs) but they sounded awesome! They were extremely charming both on stage and later when we met them. Bella had made a picture for them and gave them each a bead necklace (they are wearing the necklaces in our picture with them). Neil (the one with the shorter hair) gave Bella his only guitar pick (at least he said it was the only one he had on him). It was so nice to escape for a few minutes and get caught up in some music that we love.
We had just enough time to rest after the concert before OT came by. We went to the downstairs gym today. OT had Bella attempt to color a picture that she taped to the door. When you’re attempting to regain strength, this is a very difficult task! She did well but was very frustrated with herself that her arms were so weak and she could not color in the lines very easily. Then she sat on a stability disc and shot baskets with weights on her wrists – and she made about 90% of the baskets! Both of her therapists were very pleased with her efforts today.
Dr. Castro was also very pleased with Bella’s strength today. She’s definitely showing improvements! Dr. Castro also said that the case manager is having trouble finding a place in Austin to take Bella and offer the treatments that she needs. I said we’re hoping for Dell Children’s and apparently that is the place they are trying to get her into. We’re still talking about a Thursday or Friday transfer – just not sure where we’re transferring to yet.
Brody’s t-ball game got rescheduled to tonight so Brian finally got to see him play. Brian is taking the night shift tonight and tomorrow and then I’m on duty all next week.

May 2, 2013 - Day 26

May 2, 2013 - Day 26

10:08 PM:
"I get so tired of holding on. I cant let go. I can't move on. I want to believe there's meaning here. 
How many times have you heard me cry out 'God, please take this!'? 
How many times have you given me strength to just keep breathing?
Oh I need you. God, I need you now!
Standing on a road I didn't plan....
I walk through the shadows and I am so afraid. 
Please stay right beside me with every single step I take.
How many times have you heard me cry out 'God, please take this!'?
How many times have you given me strength to just keep breathing?
Oh I need you. God, I need you now!" - Plumb "Need You Now (How Many Times)"
Rochelle, this is my new favorite song. It's so fitting right now though, as you mentioned, it makes me cry every time. I'm adding it to Bella's Super Bella playlist that I made for her.

Thanks Coach K & Lady Panthers for the note! It's hanging on Bella's hospital room wall.

11:39 PM: Tonight Brody had a t-ball game scheduled at 7 and Faith had a Spring Band Concert also at 7. Not possible for the parent not at the hospital to be in both places at once so we had to call in reinforcements. I had missed Faith’s Christmas band concert because my job required me to be in St. Louis that night, and Brian had yet to see Brody play a t-ball game or scrimmage (not that he’s had very many). So Brian's mom sat at the hospital with Bella. Brian went to t-ball (which got cancelled at the very last minute - thank God! It's too darn cold!) and I went to the band concert. It takes a village but even with the offer of help from the village, the kids each want mom and dad at their side. These times are really hard on the whole family. 

Faith caught a basketball in the face Tuesday night and thought she may have broken her nose. Last night, I noticed her eye was really red and became concerned that it was due to trauma. Doctor thinks it’s just pink eye and prescribed drops. While you’re praying for Bella, please throw a quick prayer in there for Faith that she only has pink eye and no other underlying problem.
I’ve been doing a pretty good job of being strong lately (that EMG test already seems so long ago even though it was only yesterday) but I almost lost it in front of all of the Eustace parents at the band concert. There was a boy – probably 14 or so – running around taking pictures of someone on stage (assuming a sibling). I flashed back to Easter Sunday – the last day that Bella was completely healthy – and remembered her taking my camera and playing photographer with our family and Jill's. I managed to control myself but was really close to breaking down.
Now for news on Bella. She is such a pro at the blood draws now too. She’ll wake up to give them her hand or arm and then she just goes right back to sleep. Unfortunately, her PT has now been scheduled for 8 AM. They had her on the schedule at 9:45, which irritated the heck out of me because I told them numerous times that she has plex at that time, but they moved it up to fit it in before flex. No more attempting to sleep in at the hospital anymore. Bummer! Since we arrived last Wednesday, Bella has only had 1 PT session. She was really too sick to do much at first but I am glad that they will be making it work in her schedule. She did have an OT session this afternoon. She’s not been doing well with her OT. She seems to be more sensitive to pain and trying uncomfortable positions than she was the first go-round. Yesterday she had so much trouble with OT that Brian and I were asked to leave. He had to leave again today during her session. I guess if she wants us to be there, she’s got to be tougher. They’re not going to let her cry to me during her therapy time.
In spite of her pain, she is getting a little bit stronger every day. And she did not get sick at all during plex today. Only 3 more treatments left!
We learned that Bella will move to inpatient rehab (think I mentioned this already) and we are hoping that will be at Dell Children’s. I believe they have an IP rehab facility as part of the hospital. We also learned that Bella will travel to rehab – even all the way to Austin – in an ambulance. That’s a long ride in an ambulance! Brian’s pushing for a helicopter but I don’t think insurance is going to approve that. Dr. Castro will keep Bella for a day or two after her last plex treatment so she will be here through at least next Thursday and possibly next Friday.
Another interesting note…Dr. Castro said Bella is never to have another flu vaccine but everyone else in the house must get vaccinated every year. I don't recall the reasoning but I'll trust it.
Tomorrow The Band Perry is performing here at the hospital! Bella and I are excited that we will get to see and meet them.
One final note of the evening: I really miss my husband. We see each other only in passing at the changing of the guard. We can only talk through text or email most of the time or a quick few words in passing (always with little ears around). And it’s about to get worse because Brian, Faith and Brody will head to Austin Sunday to stay with my parents. They will all start school in Lockhart on Monday. I’m taking the week off since I really can’t concentrate at work these days anyway. Brian will be down in Lockhart trying to find us a place to live that is somewhat wheelchair compatible. It's very hard for us to make major life decisions when we're never together! 

11:43 PM: HOLY COW! Just got brave and looked at the claims that have been filed on Bella. Thank God for insurance!!! The first hospital stay was billed at $134k! Fortunately, that is covered at 100% after our $250 deductible. Rehab claims haven't been filed yet and neither has anything from this stay. Wonder how much plex costs? And I wonder if there is some lifetime maximum that we're going to hit with this disease.

May 1, 2013 - Surprise EMG

May 1, 2013 - Day 25

8:54 AM:
They came in and woke Bella at 8:30 to take us for a surprise EMG. Bella is really scared & neither of us has eaten

11:21 AM:
Oh my God! That was the worst thing I have ever experienced. It was worse than my labor with Bella when I was at 10 cm before the epidural took effect. It was seriously like watching someone being tortured. She screamed and cried and begged them to stop. We discussed 1/4 of the way through postponing until Monday and having her placed under anesthesia. The doctor really discouraged waiting and gave me a look that told me it might not be safe to put her under again (3rd time in 3 weeks). Bella agreed timidly to go on. She said that the pulses in her hand/arm felt like getting beat with a hammer. The absolute worst part was when they wrapped 2 metal rings around her pinky and sent shocking pulses. The leg was a little better. I'm not sure if that's because the nerves are more damaged in her legs or she was able to focus on distraction (playing smack that gugl on child life's ipad). I promised her anything she wants - told her I would buy her a pony. I think I'm going to make out better than that and possibly just be buying another American girl doll. It was SO awful! We are trying to recover now. Breakfast was finally ordered. Bella says the plex, IVIg, even breaking a bone are a breeze compared to what she just went through.

5:07 PM:
We finally got the results of the torture test and Bella has AIDP (the "typical" GBS)! This means the doctors expect (at this point) for her to make a slow but full recovery. The plex seems to be working so it has been extended to 7 treatments (adding Monday and next Wednesday 5/8).
Neuro doc (Dr Castro) did say that she may need to do another EMG if Bella does not improve at the rate expected BUT she would sedate her for the next one. Dr Castro also said that she is very pleased with Bella's improvements today. They are minor but significant.
There is still a potential that Bella has chronic GBS (CIDP) but we would not be able to rule that out for quite some time. Basically, we will get to know Dr Castro extremely well and will be visiting her in dallas for a long time.
For now, we are breathing a sigh of relief and praising God for the good news. MORE HAPPY TEARS!!!
Thanks so much for the prayers!

From earlier tonight - all snuggled up with her cheery pillowcase and quilt made by her very talented great-grandma

April 30, 2013 - Day 24

April 30, 2013 - Day 24

9:36 AM:
I forgot to post this yesterday. Bella got a visit from 2 of the hospital clowns (these guys are doctors who dress up when they're not on rotation & cheer up the kids). Plex #3 starting right now

4:30 PM:

I used to think I was busy. I used to think I was stressed. If I had the ability to laugh, I would be laughing at the old me. She didn't have a clue what stress was. She was blissfully ignorant.

10:16 PM:

The pivotal 3rd plex treatment happened this morning. Bella is a pro at this now. She doesn't get scared, and she doesn't have to hold Brian's hand. She only got a little nauseous during the last 10 minutes of treatment. She doesn't like the smell of her blood though. (She must be like a certain vampire girl who stole her name.)

Brian learned that they wash about 65% of her blood each time they do a plex treatment.
The PMNR doc told Bella that she would have to wear the SCDs (leg sleeves) again. Bella got really grumpy about that news but they haven't brought them in yet so tonight will be free.
She was weak and tired throughout much of the day. OT didn't go so well. Just like yesterday, Bella had trouble sitting upright so simply balancing and strengthening her core with the OT holding her upright consumed all of her OT session. PT came by during plex but then didn't come again. I was told they would try to put her on a regular OT/PT schedule so they wouldn't interfere with plex but that hasn't happened yet.
I'm disappointed that school services has not come by yet even though we've requested them more than once. I'm planning to be more vocal about that tomorrow. Bella really needs that mental stimulation and needs to do something besides art projects and watching TV.
Brian took her for a walk in the courtyard around 5:30. A little fresh air tends to do wonders. She was upright in her wheelchair for an hour and did very well. She even wheeled herself down the hall for a little bit. I brought Pappasito's for dinner so we finally fuflilled our tex-mex craving. It was excellent!
I hesitate to speak it out loud but I think Bella is a teensy bit stronger tonight. She's able to brush her hair (though she can't quite get the back) and she can reach up a little higher to hold onto me during transfers. I am crying hopeful tears of joy and praying, praying, praying we've turned the corner and will see improvements with no more relapses! Here's hoping for more happy tears tomorrow

She looks pretty happy to be able to wheel herself. Her cath site is much less sore now 

April 29, 2013 - Day 23

April 29, 2013 - Day  23

10 AM:
Thank you all for the continued prayers! I believe that it is because of your prayers that Bella had a better time with the plex yesterday. Today I ask you to please pray that the EMG will not be painful and especially that it will tell us it is only Bella's nerve coverings that are damaged. 

3:13 PM:
Still waiting for the EMG. Beginning to think it's not going to happen until Wednesday

5:23 PM:
Brian and I would like to send a heartfelt thanks to Shelby Adams for coordinating dinners and to all the people keeping us from starving Faith and Brody. We are eternally grateful for your generosity! 

7:14 PM:
The love pours in from the mailbox, the kitchens, the Facebook comments and messages, the texts, voice mails and emails and even from my sweet Brody who picked these flowers for me yesterday and left them on my desk for me to find. It is humbling, overwhelming, and heartwarming to be on the receiving end of so many prayers and so much love. In spite of what we are facing, we are blessed.

Midnight:

The nurses tried to confuse Bella and me this morning by writing April 30, 2013 on the wall. Time means very little inside the walls of the hospital and if not for that note on the wall, I would have no idea what day it is. Even with that, I often forget. Anyway, Bella figured it out before I did and I fixed it (still forgot later that it was Monday). Bella slept really well - aside from waking me every few hours to be shifted from one side to the other. She likes to sleep on her side but is unable to roll her lower half over without assistance. I was grateful not to have to make any middle of the night restroom trips with her. Her general ped doctor and I decided to switch her from Benadryl at night to melatonin (with an order for Benadryl as needed). That has worked wonders in helping her to sleep more deeply.
Bella's appetite and mood were greatly diminished today. She didn't really want to eat anything but she did take in the food I forced upon her. She is very scared about this EMG. So scared that she covers her ears at the mere mention of those letters. It's really a shame that they weren't able to fit it in today. We are looking at most likely Wednesday. It's possible they'll do the test tomorrow but since she has a plex treatment, I doubt they will do this test also. I am eager to get through that part to see exactly what we are facing.
Today Bella and I met Dr Castro who is the neuro-muscular specialist and will be Bella's aftercare doctor. She talked to me about some different (scarier and rarer) forms of GBS but honestly, I tuned her out at some point. I'm not ready to look beyond this current hospital stay and the set of plex treatments Bella is getting. This is going to work! It has to!
Dr Castro did say that Bella will need inpatient rehab again (and likely for a while). I figured as much but it's still disheartening to hear.
We don't really know any more yet and won't know until later this week. They did say that we hope to begin to see improvements after the 3rd or 4th plex and (can't recall if I've shared this already) seeing some improvement actually means that they will do a 6th and maybe 7th treatment. If it works, they want to keep doing it.
Bella only had physical therapy today. That session didn't go so well. She is so weak and tires so very easily. After seeing her improve to the point that she was walking (with assistance) early last week, it's hard to see her not even able to sit. She was napping when the OT came by later in the day so she missed that session but I think she did her share of OT in the art studio. We did make it down there today and Bella painted a flower pot. She got upset with herself because her hands shake so badly that painting didn't turn out as she planned.
While she was napping, the massage therapist came in and worked on Bella's neck and shoulder muscles (I could use one too!)
She's been in a lot of pain the last few days. Transfer -from bed to wheelchair and back - are very difficult but the docs are going to put her back on neurontin. That should help ease her hip and leg pain a bit and I'm surprised its taken this long to get her back on it.
One of the many therapists/specialists Bella gets treated by is the respiratory therapist. They come in 2-3 times a day to check her breathing and they do that with this tiny plastic inhaler-like device that measures the strength of Bella's breaths. Last night Bella was on her side, ready to sleep when they came in to check her. Her best of 3 was a 32 but Bella knows that if she measures lower than a 35, they'll put the heart rate and oxygen monitors back on her (the 5 sticky things - sorry don't know the medical term) full-time (she just got them off yesterday). So she told the RT that she needed to sit up and try again and that time she measured a 38. Tonight she measured a 38, 39, and 40. This is one smart patient they have on their hands!
Tomorrow brings plex #3 and scheduled OT and PT sessions. Praying hard for an easier time with the plex and some resulting strength 

April 28, 2013 - Day 22

April 28, 2013 - Day 22

4:12 PM:
2nd plex went much better than the first. Will post more details later but Brian took this picture of the plasma that they extracted today from Bella's blood.

A few pics from Saturday. Thanks Jill for the Headbandz game! 

8:48 PM:

Bella had a better day overall today. It didn't start so well though. Because today was a plex day, they came to draw her blood just before 8 this morning. The inexperienced lab tech struck out twice so they had to call in the IV team. We've insisted that they schedule the IV team for each blood draw. Poor Bella says she has 10 holes in her body since she got to the hospital this time. She's been stuck too many times!
The plex went well. Bella did get nauseous but managed to control it. The neuro doc explained plex to Brian today as similar to an oil change.
The EMG is scheduled for tomorrow morning. EMG will have two parts - the first part is checking nerve conduction and the second part is intramuscular involving a needle. This test should tell us if the nerves themselves are damaged (a rarer and more intense GBS) or if it's just the nerve coverings (the typical GBS). We're praying that it is just the nerve coverings because recovery will be shorter and is expected to be complete(I.e. weeks/months). If the nerves are damaged, recovery could take months or years and Bella may never get back to pre-diagnosis strength. Don't even want to think about that.

Bella was feeling good after her plex so we gave the green light for visitors. She got to see Uncle Steve, Aunt Amy, and cousins Emma & Ben and then her teacher Mrs (Amy) Huggins. Faith, Brody and I were there too of course. Brian took Faith & Brody home and Bella and I decided we wanted Tex-mex. Unfortunately, Brian had taken my car and his keys (because I assured him there was no way I would need to leave Bella for any reason but Bella's craving was enough she would have let me go). We settled for ordering quesadillas from the hospital menu and for the first time in weeks, Bella ate her entire dinner of quesadillas, salad, strawberries and water. We celebrate any victory we can - no IV fluids for this girl!
We should get a regular OT and PT schedule tomorrow so although there is no plex tomorrow, she will have a full day.

April 27, 2013 - Day 21

April 27, 2013 - Day 21

Bella was much better today. She ate relatively well, though the doctors are still very worried that she is not eating and drinking enough. They keep threatening to put her on IV fluids, and that is a good enough threat to force her to eat. 
She had sessions with both OT and PT. It's disheartening to watch her and hear about her sessions because she has relapsed so far. Bella had ordered some Legos while she was in rehab and wanted to work on them with OT. However, the pieces are too smal for her fingers to work with right now. Her hands shake terribly. We encourage her to hold her own cup and try to feed herself but she honestly has little control - especially with a spoon or fork. Her PT session was spent doing leg slides (try to bend one leg and slide the heel down the shin of the other leg) and sitting upright. She is not able to balance herself for more than a few seconds in a seated position. Less than a week ago, she was standing with very little assistance for a minute!
Faith, Brody and I went up to spend a few hours with Bella this afternoon. She was so much happier than yesterday and she seemed okay with the next round of plex.
Brian stayed at the hospital all day and is staying tonight again (then I will stay tomorrow night). He'll handle the next few plex treatments. It is hard for me not to be there but probably better that I'm not on those days. I'll be with Bella on the non-plex days this week.
The neuro docs have scheduled an EMG (Electromyography) for Monday. This will help determine whether it is just the nerve coverings that have been damaged or if the nerves themselves are also damaged. I have a lot of questions about this procedure and what the findings mean that I will get answered before Monday.
I am still so shaken from yesterday and I'm scared. Please pray extra for Bella tomorrow - she'll be going through her next plex while many will be in church.

April 26, 2013 - First Plasmapheresis

April 26, 2013 - Day 20

12:40 PM
Bella's first plasmapheresis started about 45 minutes ago. I think I've been having an out-of-body experience for the last 2 hours. Not quite sure how I'm still standing but the nurse wants me here to watch for changes in Bella and she's very scared so I wouldn't leave her. 

10:12 PM:

To put it mildly, today was hell. Bella woke several times during the night and we had to make the difficult trek to the restroom each time. At 6:20, the nurses arrived to draw her blood. I was given misinformation last night about the vas cath. They cannot use that for anything other than the plasmapheresis (aka plex). Although she had a normal IV in her arm as well, they poked her in the other hand to draw the blood. With these blood draws every other day, they are checking for 4 things: calcium levels (has to do with how much of a medication to give along with the plex but cannot recall what type of med), CBC (complete blood count to check the platelets – if low, they would use less anticoagulant during the plex), the percent of red blood cells and PT/PTT (didn’t write down what the last 2 are for). Maybe Carrie or Katie can offer some guidance on those.
Bella’s stomach was hurting all morning so she did not feel like eating much for breakfast. The neuro medical student came in for an eval, then PT came by for her evaluation. Next we saw the neuro resident. In the midst of all this, numerous nurses were in and out of the room. The transfusion doctor came in and began the long explanation of plex. I listened well and even asked some questions. The science of the plasmapheresis process is pretty cool – if you’re into science (which I am not). However since it’s happening to my daughter…not so cool. While the transfusion doc was in, Grandma Diane and Grandpa Tom arrived with a cinnamon roll for Bella. Cinnamon rolls have been the only thing that Bella has requested to eat over the last few weeks and this was only her 2nd one. Somewhere during the transfusion doc’s explanation, I began my out-of-body experience. I believe I returned to myself finally at around 4 but I left for quite a while. Perhaps this is one of those times where God was carrying me because I honestly don’t know how I remained upright all day.
The (male) nurse for the transfusion doctor is the person who sets everything up and stays in the room observing Bella and the process for the entire 2+ hours. He came in to begin setting up around 10:45. When he actually plugs the tubes from that big machine I posted a pic of earlier to Bella’s catheter, anyone in the room has to wear a mask. The catheter is so large and in a main artery that the risk of infection is high, so they do whatever possible to minimize that risk. That’s the reason why they cannot use that cath for those regular blood draws. We donned our masks and I had to hold the top of the cath in place and hold Bella’s hand AND try not to pass out while the nurse hooked up the tubes. If I weren’t out of my body, I might not have been able to watch the massive amounts of blood that were pulled out of Bella’s body. I was even able to handle the nurse talking me through (and showing me through a viewing window on top of the machine) exactly what the huge machine was doing (spinning Bella’s blood so the 4 parts separate – the red blood cells are heaviest and fling to the outside while the plasma falls in the middle (and is yellow). The plasma is where the “bad” antibodies are so this process draws out the plasma and then replaces Bella’s red blood cells along with donor plasma.They start out slow and with the least amount of medicine to ease the patient into the process and then toward the end of the 2 hours, they are using more medicine and spinning faster. Bella didn’t handle the end part very well. She had managed to eat a snack of strawberries and some cinnamon roll in the beginning but wasn’t able to hold that down later. It got very scary there for a while when she started vomiting.
Bella has appeared the sickest today of the last 3 weeks. She’s not able to eat much and cannot regulate her temperature. She doesn’t have a fever but when she gets hot, she reacts similarly to when a person’s fever breaks. She starts sweating and thrashing about. I’m really not sure how much of this is related to the anesthesia from yesterday and how much is a reaction to the plex. They are planning to give her some Zofran for the nausea before the next plex treatment and before all future treatments. Bella is at her weakest so caring for her is extremely time-consuming. There was very little rest time today and eating was just an afterthought. My back is very sore from all the Bella lifting I've done.
We stabilized for a bit this afternoon and Bella took a much-needed nap. She looks so very tired – even the general ped doctor commented when she came in while Bella was napping.
Docs all say to give the plex 3 treatments before we expect to see any improvement. She’s scheduled to receive treatments Sunday, Tuesday, Thursday and Saturday 5/4. She starts working with OT and PT again tomorrow and then will see them daily M-S.
Bella did manage to take in a milkshake and some chicken noodle soup for dinner. She was beginning to look better when I left her with Brian tonight. The one positive is that the cath site does seem to be less sore, as the doctors promised.

This hospital visit is so much worse and scarier than the last time. When we were here previously, Bella was able to wear her normal clothes and take baths. We just had to be careful of the IV in her hand. This time, she is in a hospital gown because of the vas cath.

There was another concert in the hospital today but Bella could not go because her plex treatment was going on at the same time, plus she hasn’t felt well enough to go to any of the activities that they have here.