Thursday, March 29, 2012

are you kidding me?

Home??? Didn't we just have major brain surgery Monday??? As I said before, God is showing off!!! As long as she has a good 'first-part' of the day today she will be discharged this afternoon. I'm so thrilled but also a little nervous at it being this soon. Camilla's swollen eyes started to open late yesterday afternoon and she was able to get up and do some walking. She even walked to the activity room here in the Burn Unit and was able to play with Crosby for about 30 minutes. We are about to try to get her up this morning to see if she will walk some more or maybe go for a wagon ride around the hospital. She is dealing with a little more pain today than yesterday but we were able to get a good dose of pain meds in her about an hour ago - she is still giving us major trouble taking all meds at this point.When Dr. Blount made his rounds a couple of days ago he said that she needed to be eating and drinking well, managing pain well and for the swelling to go down enough that she could see in order for her to go home and she has definitely met those hurdles. On one of Dr. Blounts visits he pulled out his cell phone and asked if we had strong stomaches, and we do, so he proceeded to show us pics he had taken during surgery showing the grids, the blood clot and the parts that were resected - WEIRD - not many people can say they've seen their child's brain! So anyway - no time for a long post - there's packing to be done :) "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 27, 2012

purple day-

Wasn't it just too perfect that God moved her surgery to 'Purple Day' - a day celebrated once a year that creates awareness for epilepsy - because He sure has been using her to create awareness for epilepsy for about 6 1/2 years now. Thank you to everyone who wore their purple clothes, accessories, Camilla bracelets, etc... Now to pick up where we left off. During the day Sunday Camilla was fidgeting, restless and generally miserable but thankfully her vitals stayed strong and the steroids they were giving her kept the blood clot in check to hold her for surgery on Monday. Dr. Kim came in and was able to complete the motor mapping with few complications although the stimulation did trigger some seizures. Ativan was given following the mapping to be sure that no seizures would follow and to allow her body to get some rest prior to surgery. Camilla slept the better part of the afternoon, evening and into the night. As 2:00am rolled around Camilla began to wake and grow more and more aggitated as the morning went on, since she was an 'add-on' surgery we knew they would not be taking her back until around 11:00am for sugery. Well in those few hours leading up to surgery Camilla was as miserable as I have ever seen her. She was fighting, thrashing, screaming and crying constantly. Her head wrap was itching and she had tangled the wires coming out of her head with all of her moving and there was no consoling her pain and frustration. Between the hours of 3:00am and 11:00am she was given Benedryl, Morphine, Ativan and 2 doses of Versed (a pre-op drug to cause drowsiness and relieve anxiety)and none of these worked to slow her down, she was still fighting and having to be held down. Finally about 30 minutes before they came to get her for surgery she fell asleep - I'm sure it was from the shear exhaustion of fighting for so long. Surgery began at 1:20pm and she was returning to her room at 6:00pm. It made for a long, anxious day (but remember 1 Peter 5 6-11) but we were really just so excited to know that after this surgery we could begin the journey of healing. Coming out of surgery she looked so much better than when she had gone in - she was sleeping peacefully and during her moments of awakening her eyes were clear and free of pain and frustration. She was able to take her meds with a good bit of applesauce and did not experience any nauseau. She slept soundly most of the night last night, only waking for meds (which she is taking willfully now), bloodwork and vitals but immediately going back to sleep. She was taken down for a follow-up CT scan this morning at 5:30 but the resident has already been by to say that all looked good with that test. She is showing that her Sodium is low (common after this surgery) but they are taking the steps to correct that and will recheck at noon. We are still waiting on both Dr. Kim and Dr. Blount to do rounds today. Camilla really 'woke up' about 8:45 this morning and she was able to take her meds and she ate a whole container of yogurt and is drinking well this morning also. Our challenge for the day: her face is so swollen that she can't open her eyes at all. It is difficult to tell when she is sleeping or awake and expectedly she is scared and is having trouble understanding this even though we are constantly talking to her and telling her what is going on, who is in the room and that this will pass soon. Overall, it is easy to see that she feels so much better than she has all last week and that is such a blessing. I feel so much better knowing that she is on the mend whereas before we were just waiting on so much to happen including seizures, surgery and of course she also had the wires to contend with. Before we talk about prayer requests let's talk about praises: successfull surgeries - check - peace for all family - check - no seizures (maybe y'all prayed too hard about that for last week haha) - check - isn't our GOD AWESOME! By far though the biggest praise we have to celebrate is that the 3 areas that were resected were NOWHERE NEAR her motor strip so we did not even have to make the difficult decisions that were expected regarding compromises to her physical abilities - A.MAZ.ING GOD! Prayer requests: swelling to go down soon and Camilla's understanding and patience until it does; no seizures; eating and drinking to return to normal soon; and for God to reveal his plans as to how we all (including Camilla) are to share our journey and experiences to tell of his grace, patience, mercy, love and salvation over the last six years.

Sunday, March 25, 2012

the truth-

So after the events of last night (see below) Brandon and I debated on whether or not to share everything that is going on because things are very scary and very touch-n-go at the moment but we decided that people have been so kind and generous and caring and that if we want to accurately tell her story we must tell the whole story. Around 2:00pm yesterday Camilla's EEG began showing seizure activity although we were not noticing and clinical presentation (not seeing her body react in any way). As the day went on things became more frequent and stronger and about 8:00pm she had 2 seizures that looked strangely different than anything we had seen before. They lasted for about 30 seconds and her face did nothing but twitch in all different directions the whole time. It was very frightening for us because we are not used to her seizures lasting that long. Dr. Kim (neuro) was called and she logged in from home to review the EEG and video to confirm seizure activity. After about 30 minutes of watching our nurse on and off the the phone she came in to say that indeed Camilla was having seizures and there was cause for concern because of the atypical presentation. For one thing the seizures were effecting the right side of her face and if you'll remember Camilla has had a Corpus Callosotomy (right and left hemispheres don't communicate anymore) and thus far has only shown activity in the right hemisphere of the brain (where the grids are) which controls the left side of the body. So how could she be seizing on the right side of her body - red flag. Dr. Kim also noticed that according to the EEG Camilla had been seizing continually for over an hour (not a clinical presentation) so she immediately ordered a dose of Lamictal to try and stop the seizure activity but had Ativan brought in just in case Camilla began having a tonic-clonic/grand mal seizure that lasted over 5 minutes. Before we could even finish giving Camilla the medicine the techs from radiology were in our room to take her down for a CT scan. Upon returning from the CT scan Dr. Blount (neurosurgeon) was standing at the nurses station reviewing the results. The verdict: Camilla has a blood clot that is located between the grid and the bone flap and we had some decisions to make quickly. Our options were to 1)go in immediately and get the clot out and we could leave grids in (since we have not gotten enough correct monitoring of her seizures) or we could take everything out, wait 10 days and start all over 2) wait until we have enough seizure monitoring to do the resection surgery or 3) do surgery Monday and give a resection our best shot. We (mostly Kim & Blount) chose option 3. We do not feel comfortable waiting past Monday to correct the clot for fear of it causing further damage. We don't want to put Camilla through any more surgeries than are absolutely neccessary and we don't want to come this far without having accomplished something. The doctors feel confident about 3 areas that have continued to show 'activity' since immediately following surgery. Would we love to see a typical seizure in order to see if there are any other areas affected and to see how these three areas react - sure - in a perfect world but we don't live in a perfect world. We knew there would be tough decisions, we know this one is not our first and won't the the last on this journey but this is what we ALL feel led to do. One thing to note is that we are monitoring Camilla like crazy today (I really don't know another way to describe it) they are watching everything and if she starts to show any deterioration in her vitals or her alertness (meaning the clot is causing problems) we will drop all plans and be in the operating room within the hour to pull everything out (and would start over in 10 days). So there you have it - the truth, the whole truth and nothing but the truth. This is Camilla's story - this is our journey. So how is everyone doing - we're good - no really - we're GOOD. We can feel God at work in the midst of this situation and she is HIS child and He is leading her care. Of course there are tears, we are human afterall but there is a peace that passes ALL understanding surrounding us. God is giving Camilla an amazing testimony and we look forward to how He will continue to use this little girl for His glory (remember - He has plans for her hope and her future). In searching and reading, these verses always find us and touch us: 1 Peter 5 6-11 "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen." I will continue to update as possible. We covet your prayers during this time - I'm not even clear on the specifics to ask for but just how God leads you. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jereimah 29:11

Saturday, March 24, 2012

family pic-

Camilla is still sleeping a lot today so I had a free moment and thought I'd post this recent family picture. We had them taken in February because we wanted some done while Camilla still had a head full of hair :) Aimee Reynolds took them and she did a fantastic job as usual! Thank you Aimee! And thank you again to all of the generous friends who continue to give gifts, contributions, prayers and loving words of encouragment. We appreciate you ALL so much. We are still waiting for seizures. Camilla is growing tired of the hospital bed and getting restless on top of dealing with smaller issues such as a reaction to some leads on her back, leaking head wrap and the drain that has migrated and is now hanging in front of her eye. Praying for seizures to begin soon so that we can do the next surgery on Tuesday but we know that God is never late and His timing is perfect. Afterall, He sees the 'big picture' and we don't. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Friday, March 23, 2012


A group of friends and LoGo Pro have gotten together a project to make t-shirts for Camilla in order to raise awareness for epilepsy and donate funds to help with her medical expenses. This is the design that will appear on the shirts (design by Kirk Brooker). To order shirts please contact LoGo Pro (located on Strawberry Street behind Colony in Demopolis) or Michelle Etheridge at 334-654-1890. Shirts are available for a donation of $15. Thanks to all who helped get this project together - you make me smile.

quiet day-

Praise God - Camilla has had a quiet day. She has spent most of the day sleeping (an answered prayer after her restless night) and, with the exception of the motor mapping that had to be done today, she has not had to deal with many interruptions. The motor mapping was basically locating the areas of her brain in which her left facial and hand 'controls' are located so that once we are able to map the seizures we will know what can possibly be removed and what needs to stay. For now, Dr. Blount is content to monitor the head wrap and not do any further procedures to correct the leaks although Dr. Kim did note that with these leaks surgery would be better sooner than later due to possible infection. Other than these few details there is not much more to report today and hopefully our evening will remain uneventfull as well (unless of course seizures want to join us). We have appreciated today being able to just 'be still and know that HE is God' and remember that his timing is perfect. "For I know the plans I have for you" declares the Lord, "plans to proper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, March 22, 2012

bumps in the road...

Today has been a VERY ROUGH day for Camilla. She is not wanting to eat the applesauce that contains her meds including her Tylenol and Motrin and she is feeling more pain today due to that fact. Her right eye is swollen almost entirely shut and she is very agitated with all of the wires, monitors and IV's on her body. Around noon it was found that her drain was not working properly and her head wrap was becoming saturated with blood and fluid because it had no where else to go. Dr. Miller (Blount's resident) came in to replace the head wrap and once it was removed they discovered that the area around the grid wires was pulling open and needed stitches. Our options were to take her back to the OR to stitch it up under general anesthesia (prolonging possible seizures), give her pain meds through her IV and do the stitches here in the room (prolonging possible seizures), numb just the area around the wires with 2 shots then do stitches (shots would burn)or do stitches without anything. Unfortunately for several reasons stitches without anything was our most logical option. It was horrible - by far one of the most difficult things I've ever had to do - to hold her down (along with 4 others) while he put 2 stitches into the top of her head. And let's talk about her head - the incision is at least 12" and too many staples to count running across from ear to ear, the drain is right at the top of her forehead and about 8 large grid wires that seem to be 'growing' out of the crown of her bald little head. So needless to say, after the stitches, the rest of her day has been filled with lots of pain and frustration. We are still waiting on seizures to return. Surgery is definitely not tomorrow and we are hoping she begins seizing soon or we are looking at pushing back the originally scheduled surgery date of Tuesday. Specific prayer requests right now include pain relief, eating and drinking and seizures to start soon. I had planned to share more details but from the time I started writing until now Camilla's head wrap is showing signs of more blood and fluid. Dr. Miller is on his way back down. Prayers please...

Wednesday, March 21, 2012

first day post op-

My sweet Camilla - she is such a trooper. Yesterday was such a long day. Surgery lasted about 6 hours but "could not have gone better" according to Dr. Blount (surgeon. He removed a portion of the skull covering the right hemisphere (frontal and parietal lobes) and placed approximately a hundred electrodes into and onto the brain. After 'loosely' replacing the skull and wrapping her head up tight she has a large 'ponytail' of wires that are having to be closely guarded (along with a drain). These electrodes will now monitor precisely where the seizure activity is originating. The original plan was to monitor these for 7 days with the resection surgery being planned for next Tuesday. The report we recieved immediately following surgery was that there was already activity detected in several areas (which is unusual while still under the effects of general anesthesia which normally supresses seizure activity) and there has been talk of moving the resection up to Friday if they can get the information they need before then. This 'information' is based on her having seizures. We need typical seizures soon in order to move the surgery up but if not we are prepared for surgery on Tuesday also. Coming out of surgery yesterday she looked perfect. Her coloring was good and she was not swollen at all. Today the swelling is setting in and she has been dealing with pain and nausea through the night and the most part of the morning. She has required Zophran and Morphine and did require additional blood this morning but now seems to be feeling better and is more active. It has been amazing to me the amount of constant care that has been required since surgery. We are in the Burn Unit which is another critical care unit but we are allowed to stay with her all the time (as opposed to PICU - PRAISE GOD) and she does have a 'one on one' nurse as well. Our night last night was very busy and long due to the constant care that I mentioned. They were continually changing tubes and wires, giving meds, checking vitals and on and on which made for a sleepless but 'well cared-for' night. She is finally starting to drink and eat well (and keep it down) and is able to take Motrin and Tylenol by mouth and the pain is starting to subside which is good news so that we can discontinue the Morphine as it too can further inhibit seizure activity. As I type Camilla is playing with her ipad and eating green beans and mashed pototoes. She has been up (standing) several times today and seems to have good strength a stability still - even after showing initial signs of mild weakness in her left arm. Specific prayer requests at this time are for her continued pain relief, comfort and tolerance; seizures to resume soon (I know it sounds crazy); for clarity in upcoming decisions; and continued peace for the entire family. There are NO WORDS to describe the outpouring of love, support, encouragment, gifts and prayers that we have recieved over the last week. Please know that we are reading and treasuring each and every one even if we are not able to immediately respond. From the bottom of our hearts - THANK YOU, THANK YOU, THANK YOU for your kindness and for loving our sweet 'baby angel.' I will hopefully update again later tonight. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 20, 2012

surgery update-

Surgery is over and we are waiting on the surgeon to come out and update us on the details. We were told that she is good and everything went as planned. PRAISE GOD! "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

surgery update-

Camilla was taken back to the OR about 8:30 this morning and the surgeon got started about 10:30. We are expecting about 3 more hours until she is in recovery. So far, reports are good and things are going as planned. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Friday, March 16, 2012

packing, preparations, people & prayers

packing - I have been packing for a week now and I still have so much more to do but I should have no problem being ready by Monday or being gone for a month. My only problem will be listening to Brandon complain about how much I pack :) preparations - From arrangements for Crosby to paying bills and cooking extra dinner to ironing Brandon's work clothes for when he's back at work and we are still at the hospital I have been very BUSY with preparations. The 'busy' has been a very good distraction though, it helps me not to dwell on the 'what ifs' of the next few weeks. people - People are already pouring out so much love for us. We have been recieving cards, letters, gifts, calls, emails, texts, etc... ALREADY and it just amazes me how people are reaching out...ALREADY. God is love and you people are definitely his hands and feet at work. I'll post pics once we are at the hospital of these but the 'well wishes' for after surgery from Camilla's classmates written on rainbows have been so moving... words written by children her age reading 'you are cured', 'you can talk to us', 'you are not scared' move me to tears every time I think of them. prayers - We already feel surrounded by and lifted up by prayers. Peace is setting in and it is a welcome friend. Thank you all and please keep them coming. We know without a doubt that these next few weeks will be the most difficult we will ever endure. We also pray that they are some of our most dear - ones in which we will see miracles take place, ones in which dreams will come true and mostly ones in which God will be glorified. Specific prayer requests include peace for all of us but especially Camilla; comfort, understanding and tolerance for Camilla; safe and successful surgeries; clear and easy decisions; and no seizures following the last surgery. Camilla - She is such a happy child. The last few days have been filled with so much laughter and other than her morning fits (she's not a morning person - she gets it from her Mommy) she is smiling and playing most of the day. Except, of course, during seizures and they are pretty bad right now. They have moved to the severe catagory and are lasting longer than usual and are very disturbing to watch even though we are only seeing 4-5 per day. We have been talking to her about the surgery and she looks at us with so many questions in her eyes as we explain things to her - especially the part about her not having any hair for awhile after this (this will be especially difficult for her vain Mommy too). Thank you all so much for your prayers and for going through this journey with us all. If you want to get my (more frequent) facebook updates you can friend me at Kelley Jacobs Smith. Schedule for now is preop work at Children's in Birmingham at 2:00 Monday and return for grid placement early Tuesday morning, resection surgery is set for the following Tuesday. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Tuesday, March 13, 2012


Finally...I am through redesigning the blog. I still have a few little things to add like the music and a slideshow of old pics but all of the important stuff is done. Whew...that was one of the BIG things on my list of 'to do's' before surgery. And yes we are counting down the days till surgery. We will leave Monday, March 19th to go up and take care of all of her pre-op work and will arrive at Children's early Tuesday morning March 20th. I will try to post a more thorough update later today. During surgeries and the hospital stay I will be updating here on the blog as well as on facebook. If you would like to get my fb updates you can friend me at Kelley Jacobs Smith. Specific prayer requests: successful surgeries; understanding, comfort & tolerance for Camilla; clarity & peace regarding all decisions to be made; no seizures following surgery. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11