October 14, 2013 - Back in School

October 14, 2013

Bella made it through her first full day of school in 2 weeks. She is dealing with some knee pain that makes it hard to walk and made it hard for her to get through the day. Not sure what caused that but we're treating it with advil and ice. Hope she gets back to near 100% soon! She closer to where she was before this little hospital stay.
We head to Dallas Wednesday for an appointment Thursday for the first of 3 neurology consults. I have a sinking feeling I'm not going to like what I hear Thursday so I have lined up a 2nd and 3rd opinion. What Bella is fighting is rare and even rarer in children. A friend shared this link on GBS. I think it explains things a little better than links I've seen before.
http://www.childrenshospital.org/health-topics/conditions/g/guillain-barre-syndrome

Our Lockhart family is doing this amazing thing for us:

October 12, 2013 - Friday Night Lights

October 12, 2013

Bella didn't make it to school Friday. She had a headache and just didn't feel well until about 2. She rebounded for the game though. She knew she needed to be there for her big brothers. Bella was on the sidelines for all but the 3rd quarter. Although we lost (by 1 after double OT), Bella was on top of the world on the drive home. I haven't seen her that happy in a while. Before the game, each of the players came over and gave her a hug. After each score, #9 Steiger Morris (quarterback) would give her a fist bump and Bella helped the cheerleaders throw footballs and tees into the stands after each score. Several of the boys hugged her and told her they loved her after the game. Not only did Bella make it through the game, but she spent a lot of time on her feet. She's still sleeping this morning!

October 10, 2013 - New Shirt Available

October 10, 2013

Bella didn't make it at school very long before her headache got so bad that she had to leave class. Poor thing. I hope she feels all better soon. 
Her vision and physical strength are still good. Just got to get rid these headaches and this fatigue!

We've gotten a lot of requests for Giving Bella Strength tees. You can purchase one through this link for 2 weeks.
https://www.bonfirefunds.com/giving-bella-strength-3/?r=7226

October 9, 2013 - Rest Day

October 9, 2013 - Day 186

Bella spent a restful day at home today. She is going to try a half day at school tomorrow. Her vision is solid and she is still physically strong. She is also extremely scared. I continue to question the decision to share the doctor's suspicions with her. I should have let her be happy-go-lucky for a few days, I suppose.

I am handling things pretty well. I might be in denial. Actually, if you recall the poem Footprints in the Sand, I believe that God has been carrying me since Saturday morning. I've remained surprisingly calm in spite of all that is going on. Also, I'm just not ready to say that what Bella has is chronic. Her symptoms don't seem to fit the mold. We're seeking opinions from multiple doctors. I made an appointment with a GBS/CIDP Center of Excellence doctor in Houston today. I spoke with the Dallas neurologist's nurse today and learned that Bella's protein level in her spinal fluid from April was 135 (which is crazy high). Her Saturday reading was 71 and normal is 45. We still don't know if this is good news - that her protein levels are steadily declining and are now at 71 or went down to normal and are climbing back up. I share all of this because I can only do so much research and you just never know who might have some personal experience or know someone who knows someone. I have yet to find any sites that explain how quickly protein levels are expected to drop after IVIg and plasmapheresis. I'm making a long list of questions for Dr. Castro next Thursday (we moved out appointment from Monday to Thursday).

Bella received a very sweet gift today. Our friends Jeffry and Shelly are friends with an assistant coach for the UT Men's basketball team. He happened to call Jeffry when they were leaving the hospital Monday night and learned about Bella. Without anyone else prompting him, he had the team sign a ball for Bella. They planned to deliver it to her at the hospital today but she was no longer there. We still go the ball and sent a picture back. Thanks Coach Springmann and Shelly!

October 8, 2013 - Home Again!

October 8, 2013

Good news = Bella got discharged this afternoon and we are all home together again! Her BP did not drop as low during IVIg today so we did not have to pause it at all. We're not sure if it was the fluids I pushed on her all day or her body becoming accustomed to the foreign antibodies.
Our good friend Chris Luckey came by for a long visit. He's one of Bella's big brothers from the LH class of '06. Should any boys ever try to mess with her, she has a LOT of brothers that will come to  her defense! Ms. Gilcrease from Lockhart Junior High also stopped by with some cheer.

Unfortunately, Bella's Dallas neurologist called me at the worst possible time - just before the nurse came in with the discharge papers. Because I've been so anxiously waiting for her call, I spent as much time as possible on the phone with her. I trust her expertise, knowledge and opinion and really wanted to talk to her. However, she did not have the best news. She is afraid that Bella does have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) because of the length of time since her initial diagnosis, a relapse is likely to indicate CIDP. Dr Castro has a CIDP patient whose only relapse syndrome is ocular (aka vision problems) so although Bella did not experience any loss of motor skills, the double vision is cause enough for concern. Doc wants to see us in her office urgently so we will trek back Dallas for an appointment on Monday 10/14. At least we'll be going opposite of the TX-ou traffic! On the phone, she suggested that Bella have IVIg monthly for the next 5-6 months. I'm not sure that any of us - especially Bella - can handle that so we'll see what things sound like next week. We're all scared and sad. I told Bella once we got home about the call and then have questioned that choice for the rest of the evening. I really burst her bubble :( but I didn't want to hold this from her like I did last week. She's so very sad. We all are. Our hearts ache. We don't  understand why we take one step forward and then a huge step back. For now, we are trying to focus on and be grateful for the fact that Bella is home, she is strong mentally and physically, and she can see! We will change our diets, our lifestyle, whatever we have to in order to keep her healthy. Please continue to pray for her and for all of us.

October 7, 2013 - Praise God!

October 7, 2013

One of the worst side effects I remember from IVIg is a terrible headache. Bella woke up with one today that persisted until about 3. Aside from the debilitating headache, Bella had a great day! When she woke up, she said the 2 objects were overlapping in her double vision. When she first started complaining of double vision a week ago, the objects were side by side. As she grew more fatigued throughout the days, the objects would grow farther apart. Having them overlapping was a great improvement and then early this afternoon, the double vision went away! Although Bella’s headache did return tonight, her double vision did not! Thanks to God and to all of you for the prayers! They are working!

Praise God! She can see!

The IVIg started at 3:40 today and lasted until about 7. Bella’s BP dropped again but stabilized after the first hour. She has one more treatment tomorrow. They are hoping to start it closer to noon so we can go home tomorrow night!
Bella had a PT session today with her inpatient therapist Kat – the same one she had back in May. Kat could not believe how far Bella has come since then. They played a game while working on calf raises. Bella’s headache was pretty intense at the time but she fought through it and worked hard for Kat.
Unfortunately, no doctors examined Bella after her double vision went away. Her Austin neuro was not able to make it to the hospital today (Bella was examined by the on call neuro). I’m hoping he’ll be able to stop by tomorrow. The test results from the labs that were sent out Saturday have not come back yet and we are still waiting on the records from previous tests from Dallas to be sent here (seriously don’t understand why this takes so long. I know they are sent electronically so what’s the hang up?).
I’m pulling overnight duty tonight and as luck would have it, all of the rooms around us are full. We were one of the only ones here over the weekend on the neuro floor but Monday brought in a lot of new patients . I’m afraid it’s going to be a noisy night. Let’s hope this really is our last night here!
Thanks to Jeffry and Shelly for stopping by this evening! And thanks to all of you for the outpouring of love and support and prayers! We are so blessed!

October 6, 2013 - Another Day in the Hospital

October 6, 2013

Where do I begin? Today was a very busy day. Bella’s IVIG (immunoglobin therapy) treatment, which began at 10 PM Saturday night, ended at about 2 AM. Her blood pressure kept dropping so they administered the antibodies very slowly. I tried to find a link to a good description of what IVIG is for those who aren’t familiar with the term. I haven’t found a good description online yet. Bella’s is receiving a daily dose of healthy antibodies from hundreds of donor blood samples. The healthy antibodies are administered to block the unhealthy antibodies in Bella’s body. The doctor explained that Bella’s blood pressure dropping is her body reacting to the foreign blood that is being pushed in. I’m not sure why this wasn’t an issue when she received IVIG back in April. Her BP returned to normal after the treatment stopped and remained solid until they started IVIG up again tonight. At the end of the treatment, Bella’s IV came out of her vein. We were very concerned about how her body would react to the immunoglobins in her body but she seemed perfectly fine. I think I was more concerned than any of the doctors or nurses. Bella had another IV placed this afternoon. It’s now in her right hand so she may not be able to do the school work she’s been looking forward to catch up on.

Because they are having to administer the treatment slowly, they started at about 6:30 tonight. Bella’s BP dropped again so they paused. They finally finished about 10 PM. Tomorrow we’re hoping to start a little earlier but will have to work about PT and OT sessions.

When she woke up this morning, for a few minutes Bella’s vision was normal. The double vision came back but not as bad as it had been. Thank God! Let’s hope that trend continues and eventually the double vision stays away! Her physical strength remains as solid as ever. She even walked to a play room on another floor and those hallways are LONG! Since we are able to move the treatments to earlier in the day, there is a possibility Bella will be discharged on Tuesday.

Bella had a stream of visitors today – the Rotzlers, the Dionne’s, the Terrell’s, Kirsten, the Walkers, Grandma and Great Aunt Mary, and several of her big “brothers” (pic to follow). Thanks to everyone for putting a big smile on her face! She seemed less depressed today than yesterday. It was still extremely hard to leave her this evening. It’s just not right to walk out of a hospital and leave your child behind.

Thanks to JD, Grant, Bailey, Tim, CJ, Dae Dae, Juan and Steiger for putting a BIG smile on Bella's face!

Praying she feels even better tomorrow. Thank you all for your support and continued prayers!

October 5, 2013 - Back in the Hospital

October 5, 2013 - Day 182 :(

7:30 AM
Our Austin neuro was able to consult with Dr Castro (Dallas neuro) on Friday. I did not share the outcome because we wanted to keep it from Bella one more night. It's not good. Dr. Castro agrees that this apparent GBS recurrence may indicate that Bella has CIDP (chronic GBS). Dr Castro was as surprised and sad as we are that Bella is facing this when she was doing so well just a week ago. 
Bella will be admitted back to Dell this morning for another round of IVIg. They also are doing a spinal tap and a blood work up (to test for that antibody that can indicate CIDP and was positive in May & negative in July). We're looking at a hospital stay of 5-6 days at least. Hopeful discharge right now is Thursday.
Bella is concerned but trying to understand why this is going on. Please pray that Bella handles the treatments and tests well, that her physical strength remains and that this is the last time we have to face this fight from inside the hospital!

11:10 AM

Starting with some positives. We have an awesome view that includes the UT Tower. And on our way into the hospital, Bella cheerfully said "At least I get to do some more painting in the play rooms".
After some initial confusion and frustration at registration, we were raced into the room and then down to pre-op for blood work and spinal tap. Labs had to be sent out by 9:30 or they would be rendered useless and once Ivig starts tonight, we wouldn't get a clear reading because of the foreign antibodies that will be mixed in her blood. Bella struggled with the IV a bit but handled the spinal tap really well, especially once her "bravery" medicine took effect. Super Bella she most certainly is. This is the 3rd spinal tap Bella has had in her young life. The initial results indicate that her protein levels in her spinal fluid are only very slightly above normal. Resident Pediatrician Dr Luk (who btw has the best patience and bedside manner of any doctor I recall working with) said he would expect a reading in the 100s for someone with GBS and Bella's is only 71. They're getting charts from Dallas hospital to compare to what her reading was back in April when she was first diagnosed. Hoping the referral lab (where blood & spinal fluid are being sent for further testing) confirms this.
Bella will receive her first Ivig treatment tonight. They've only initially ordered 4 doses so we can hope that means we bust out of here on Wednesday.

11:38 PM

Bella’s first IVIG treatment started at 10 tonight. They’ve had to pause it at about 10:40 because her blood pressure was too low. We didn’t have this concern previously so I am not sure what it means but anything that concerns the nurses certainly concerns us. They are restarting and monitoring.

Bella was examined by 2 separate neurologists today – neither of them the two who are handling her care outpatient. All 4 neurologists have reviewed her MRI and we got a better understanding of the scan today (it’s hard for a non-medical person to understand this stuff over the phone). Our understanding now is that the scan possibly revealed that Bella’s 3^rd cranial nerve in each eye was enlarged. The reason we say possibly is because the 3^rd nerve is very hard to see in these scans so they aren’t sure if it appears inflamed because they just got a really good scan of it or if it’s actually inflamed. Unfortunately we don’t have a previous scan of Bella’s brain to compare to. We also understand a little more about the protein in the spinal fluid. On call neurologist explained that GBS patients will typically present with high protein levels (max is about 150). We don’t yet know what Bella’s reading was from her April 8^th LP – we’ll get those results from Dallas Children’s soon I hope. Let’s say it was around 130. If it’s been steadily coming down and is now at 71, that’s good. If it went all the way down to normal levels (45) and is now back up, that’s not good. Again unfortunately we don’t have a reading from between the hospital stays to compare to. In addition to the 2 neurologists and the pediatrician, Bella also saw a pediatric ophthalmologist today. He did not seem overly concerned with her condition and his role would really be to help her deal with the double vision if it persists. The neurologists are the ones who will help to cure it.

Bella was stable today. Still experiencing double vision but still as strong as she has been. Her back hurt terribly all day after the LP, which is very normal. In spite of several visitors including her best friend Avery and her mom; brother Brody & sister Faith; Grandma, Great Aunt Mary, and two special ladies from her Dad’s school (Sheila and Monica), Bella struggled quite a bit today with having to be back in the hospital. She was very sad and I pray she does not fall into that horrible depression again. It was very hard to leave her tonight. Brian (her dad) is staying overnight since he sleeps better with the surrounding chaos.

Thank you for the prayers, comments, and texts! We draw strength and comfort from the army of Bella’s prayer warriors. 

October 3, 2013 - The Waiting Game

October 3, 2013

5:29 PM
Playing the waiting game again. I'm really not good at this game. Bella had an MRI this afternoon and it went well. They did a brain scan with and w/o contrast dye. Bella handled it like the champ she is. Doc should have results now. Just waiting for call. I left a message on his cell with a gentle reminder of how eagerly I'm waiting. 

Bella slept 11 hours last night! She would not have gotten that much sleep in the hospital so it's a good thing we were sent home. She was feeling okay this morning. Motor skills are still strong - I'm watching that like a hawk. Every balance waver (even though that's normal for her progress) causes me to overreact a bit. When she took off the patch to take a bath, her eyes looked a little clearer. She was actually looking at me rather than to the right of me. She said the two Mommies were right next to each other so it was easier to focus. The longer she had the patch off, though, the farther apart the objects got. She is really, really tired (as am I so maybe that's less GBS related and more stress-related).

As soon as I know more, I'll share. Thank you for the prayers! Please keep them coming!

11:30 PM
I've hesitated to share the results because we really don't know much. The MRI was not clear unfortunately. Her 3rd cranial nerve is inflamed. So we now know what is causing Bella's double vision. What we don't know is what will we do about it. Her Austin neurologist would like to consult with Dr Castro in dallas because Dr Castro has a lot more experience with GBS. Also Bella is still very strong physically so that causes some confusion too about what this weakened nerve really means. Hopefully The two doctors will be able to consult tomorrow (Dr Castro is out of town at a conference) and we'll have a better idea of what to do next. 
Thank you for the continued prayers!

October 2, 2013 - No Answers Yet

October 2, 2013

I tried to post this last night but I was working off the iPad and could not copy over from Facebook.

2 PM:
Bella finally had a neuro consult at about 11 this morning. Bella's eyes are pretty messed up. Without the eye patch, when she looks at me, it actually appears that she's looking to the right of me. With the patch, she's fine. Neuro is comforted by the fact that Bella's motor skills are still strong. He said for a GBS patient she's doing awesome. He wants to have an MRI of the brain to look for one of the optic nerves (processing so much that I can't recall which nerve). He's expecting that to be clear. We won't get into the what if it's not clear yet. He also wants to run 2 other tests to be cautious - respiratory and blood pressure sitting and standing. With a GBS patient, you cannot be too cautious (his words and I agree). Assuming all tests are clear and done today, we could possibly go home today. The later it gets in the afternoon without the MRI, the more doubtful I am that we'll get out of here today.
We're still waiting to see the opthamalogist too.

11 PM:
Today was quite frustrating. We waited and waited for this MRI. Turned out we were waiting for the attending neurologist to confirm what the resident neurologist suggested at 11. We didn't see him until 5 so we didn't get the MRI today.

On the plus side, the neurologist felt that Bella was well enough to go home and do the MRI and opthamalogy visit outpatient. So we got discharged tonight! It's very unsettling to not have a treatment plan or clear indication of what's going on but it's nice that the doctors are not worried enough about Bella to keep her in the hospital. Before we left, Bella handed out some Giving Bella Strength bracelets to the nurses.

We are all home tonight. Thank God! We'll see what tomorrow brings. Please pray the treatment is as simple as a course of steroids!

October 1, 2013 - Not Again!!!

October 1, 2013

8:21 PM
We've been admitted overnight so Bella can be closely watched. So far her motor skills are not affected. It's just the Vision. We're hoping that this is not another GBS relapse. One of the ~10 doctors we've seen since we entered the ER (the Hospitalist) dared to utter MS at me. Dear God, NO!!! He says that in children MS usually presents as vision problems. He also said the youngest MS patient he's diagnosed is 13.

The general docs (hospitalists) will put in for a neuro and ophthalmology consult first thing in the morning. Based on the results of that consult, they may do an MRI tomorrow. The last MRI was on April 8th and what proved the GBS dx.

I don't think I can take this again. Lots of continued prayers needed.


4:48 PM
Prayers Needed! Bella started experiencing double vision again yesterday. The last time she had that was in the hospital in May. Doctors are recommending we take her to the ER to be evaluated by a neurologist. Times like this it would be really nice if we had a good neurologist in Austin instead of Dallas so we could avoid the ER! we're hoping this is just related to allergies or a headache and not a relapse. I can't take the hospital again! Please not again!