Saturday, August 1, 2009 9:36 AM
Well Tuesday is going to be our big day!
The past month has gracefully flown by. We did manage to switch Rebecca’s Keppra back to regular Keppra from the Keppra XR and that has helped, but she is still in somewhat of a rough patch in regard to her seizures. But don’t fret – that is a GOOD thing, going into this surgery. The first part of the surgery is to implant EEG electrodes, and monitor her seizure activity. So we WANT the seizures to continue, hard and heavy once we get into the hospital, so the doctors can get lots of data to make the right decision. Becca started her new year at Pre-K. Same classroom and same teachers, but this year the 4 year old’s go 5 days a week, all day. So Becca is going to school as much as a Kindergartener! It wears her out, but she enjoyed it. They even take nap during the day. she has had a few bouts of digestive issues (I’ll spare you the details), and has missed a few precious days of her only 2 weeks of Pre-K before the surgery, and missed several sessions of OT or PT, but keeping her healthy before surgery is important. I’ve been helping her walk into school this year, so instead of riding in her wheelchair to and from the classroom, she is walking in! Just like one of the big kids. Well – not quite, she requires a lot of hand hold assistance to keep a distracted 4 year old from sitting down to play where she is, or walking up to any and every stranger in the hallway to say “Hello” in her own special ways. I am so proud of her. Even other teachers at the school, who just know Rebecca from seeing her in the hallway are amazed at how well she is doing and have commented on her progress to me. Rebecca even has a special teacher friend at school, that isn’t even her teacher! Ms. Eubanks teaches 4th grade, but Rebecca loves to stop and say hello to her each morning. The first day of school she toddled right up to her and gave her a big hug. I don’t know who was more ready to cry, the teacher or myself. The attached picture is from her first day of pre-k this year. Continue to pray for us as we have her Pre-op on Monday, and surgery Tuesday. I’ll do my very best to keep this site updated after her surgery is over (Duke has internet access so it shouldn’t be a problem).
Monday, August 3, 2009 1:29 PM
Today was pre-op we did learn one thing today, that was different than what we thought. It isn’t going to be all one admission like we were under the impression it was supposed to be. Evidently this will just be the 1st surgery (the intracranial EEG leads). Then after they get all that data that they are happy with, they will remove those, keep us another night or so, and send us home. Once she is back at her baseline, we will return, and THEN proceed from there. Dr. Grants aid the risks are too great to just proceed with grid placement right away. She needs some time to heal. So whereas it doesn’t mean as much consecutive time in the hospital as I thought, it will mean more back and forth than we thought. oh well. We’ll know for sure after 4 today what time the surgery is, but Dr. Grant thinks it will be about 9 or 10 am tomorrow. It should last about 4 hours. Still expect 1 night in PICU, then off to one of the EEG monitoring rooms in the 5100, likely 5102 again.
Tuesday, August 4, 2009 3:07 PM
Rebecca is out of Surgery and we are waiting to see her in the PICU Dr. Grant says everything went well. I’ll update more tomorrow once I’ve seen her etc.
Tuesday, August 4, 2009 7:20 PM
We’ve been into the PICU to see Rebecca, she is still really groggy and sleepy, so we’re just trying to let her sleep for now. They gave her some additional pain medication, since she seemed to be pretty uncomfortable (you would be too with holes in your head!). But the more she rests now the faster she can heal. But so far she seems fairly responsive to David and I. Tomorrow we’ll get moved to one of the EEG monitored rooms in the 5100 unit.
Wednesday, August 5, 2009 4:33 PM
We are settled into the room now (5103). I went home and took what was perhaps the best nap of my life! David stayed with Becca. Rebecca is still getting pain medication pretty much every few hours to control her pain. We still haven’t coaxed her into eating or drinking. We’ve given her drops of apple juice through a straw – but she has yet to suck or drink on her own. We’ve tried giving her bites of yogurt on a spoon, but she isn’t very interested. poor baby!
Now we just settle in, and “push the button” every time we see a seizure event.
Thursday, August 6, 2009 7:43 AM
Rebecca and I both had a fairly restful night.
After my last update thanks to my faithful prayer warriors we were able to coax her into eating more pudding. yippie! I’ve given her a few bites this morning, but it was about the time she needed more pain medication, and she was just getting to sore to use the energy to eat (I imagine using your mouth and jaw to open for food is hard when your head hurts as bad as hers does). So we’ve given her some more medication and will give that some time before giving her some Applesauce (a favorite food!) They are gonna take out the catheter today. I know – a catheter for a kid in diapers? But it is so they can easily measure fluids in and fluids out during that period right after surgery. They will also take out the 2nd IV line in her left hand. It hasn’t been used since the surgery, but was there just in case. They kept saying they wanted it in case her other IV fails. I finally convinced the Dr they can use the Dang port if her IV fails, it was stupid that it wasn’t used in the first place. All she keeps doing is chewing on the IV access. (I think its a bit of “Hrm what is this – get it off my hand!”)
I feel badly because she so badly wants someone to pick her up, but she hurts to badly for us to even get our hands under her. She has signed eat a couple times to get a few bites of food. And yesterday – maybe she was playing, I dunno – but she signed “More”, we couldn’t figure out more what, but she kept signing more. She has NEVER signed more before. I know this isn’t even THE epilepsy surgery, but still, a major communication breakthrough. Dr. Grant said they will likely have their conference on Friday to discuss all the data. Keep up those prayers.
Thursday, August 6, 2009 8:01 PM
We’ve spent most of the day trying to coax her to eat and drink. She still hasn’t been very eager about either. I reckon part of her refusal to drink is she is so well hydrated with IV fluids. But we’ve gotten her to eat a little bit more at each meal. Dinner tonight was Chicken Tenders, so those cut up into teeny pieces were gobbled up because she could do it herself when I gave her the bite. But it wears her out fast. She did get to snuggle and sleep on daddy’s lap for about 10-15 minutes today. Moving her isn’t easy, aside from managing her pain there are also the wires to worry about. Those EEG electrodes from inside her head are attached to a small backpack with little jumper boxes. During a normal EEG she only has 1 jumper box thingy in the backpack. But because of the number of electrodes there are 3 of them. Not something she could lift herself. Plus the lead from the wires from her head to the backpack isn’t all that long (the backpack is sitting beside her head on the bed). So to manage that, all the other typical hospital stuff, it takes 2 people to move her. The good news – and those that know her well can appreciate this. She is still excited about gummy bears. Put a bite of food in front of her and you can see the “ehh” reaction though eyes that are only halfway open. Put a gummy bear in front of her and those eyes open nice and wide and she looks at the gummy with that look of “ohhh!” Then her little hand reaches out and grabs it and she shoves it into her mouth. Gobble Gobble! Our baby LOVES her some gummy bears (The Target brand gummies are especially soft, and flavorful. Total opposite of the traditional “Haribo” brand! Whoda thunk the tarjay brand would be head over heals better, but it is.
The doctors are going to have their big Epilepsy conference tomorrow. This is where they will look at all the data they’ve gotten, her scans etc and try to come up with a next step. We don’t know the time, only “morning”. It isn’t something we get to attend unfortunately, but it does mean that by mid-afternoon we should know something.
Friday, August 7, 2009 9:39 AM
Like clockwork – day 3 and the swelling commenced, and this isn’t even as major as the other surgery Well, the doctors met and talked, and it seems that the activity does mostly come from the right temporal lobe, but enough activity is seen everywhere else to say surgery is not a option. So the next step would be a VNS (Vagal Nerve Stimulator). So they will monitor her through the weekend, She is on the surgery schedule for Monday to remove the leads. Monday they will take them out and we should go home Tuesday. Then we’ll give her a month or two to recover and decide on the VNS. She ate a little bit better breakfast this morning and even drank a little bit of her chocolate milk!
Sunday, August 9, 2009 7:43 AM
So just saw one of the Neurosurgeon’s and found out we are on schedule for first thing in the morning (don’t know what that means, but really early I suppose). He said they bumped her to the first case. All the better for her though!
So we’ll go home Tuesday! The end is in sight. Although I know we really NEED Becca to eat and drink better. So please – all my prayer warriors, pray she gets her appetite back. Becca is NOT a picky eater, or a child who would normally ever turn away food or drink. We are dangling some of her very favorite foods in her face and other than gummy bears she is pushing away most everything. She just doesn’t want to open her mouth.
Monday, August 10, 2009 3:04 PM
So all the electrodes are out. The surgeon put a very thin layer of titanium mesh along the area of the front where those holes are. He said the other holes he could cover with muscle, but the ones in the front he put the mesh to give her a little bit more protection as the bone grew back in. She obviously still grumpy and we are managing her pain. But she has already drank some chocolate milk with the gusto we are used to seeing her drink with! She snuggled and slept on David for a good bit as well.
Hopefully we’ll head home tomorrow!
Tuesday, August 11, 2009 11:16 AM
well she ate pretty good for Breakfast, unfortunately she has had a minor “setback” through the night. She has had a slight fever on and off. Because she is post-surgery we have to stay another day to make sure it doesn’t get worse and that there are no signs of infection. Major bummer. We really wanted to go home. (that and the kid in the room next to us is being a royal pain and keeps having major temper
tantrums and screaming) Pray her fever goes away!
*minor update* – since the room we were in is one of 2 rooms wired for Video EEG, they needed to move us to another room so they could use it for a patient coming in who needed the Video EEG monitoring (VEEG). We were on the VEEG monitor until they took her strips out yesterday. guess the good news is, we aren’t next to temper tantrum girl anymore! (she had 3 or 4 screaming fits last night between 8 and when I finally passed out, not because she was in pain, but because she wasn’t getting her way)
Wednesday, August 12, 2009 10:56 AM
Home at last, home at last, Thank God Almighty we’re Home at last (My Apologies to the Rev. Martin Luther King for rewording his famous line – but its just perfect for how we ALL feel) Rebecca was so ready last night she managed to remove her port access – aka “De-access herself”. Thankfully the IV had been stopped and she’d already been Heparin flushed, but its still too funny. She was pretty much pitching a fit anytime she was in the crib too – she wanted OUT!
She is sleeping comfy cozy with Daddy on the couch now.
Now for a few days to just chill out and relax.
Wednesday, August 12, 2009 7:43 PM
I’ve realized over the past week a few things I never realized how much I took them for granted
– Wood sub-floors (walking around on concrete floors all day hurts your feet, Hospital floors have zero give to them. Your typical house flooring has the sub flooring to give it that give (and usually that squeak!). – Being able to just walk into the kitchen to get what I want, when i want it. No trying to make sure Becca is securely in her bed and trodding down the hall to the ice machine/water fountain to get something to drink (or make my Crystal Light with).
– Not having to hear other children have temper tantrums at all hours of
the day and night.
– SILENCE, no monitors beeping, the constant clanging of the little metal
rack where charts are kept, or the opening and closing of 3 ring binders.
– 2 ply toilet paper (that industrial hospital toilet paper is cheap!)
– Being able to give my child her medications on OUR schedule not the
Ahh – so glad to be home!
Sunday, August 16, 2009 10:46 AM
Becca is recovering well. Her appetite is more or less back to normal. I guess like all kids her age, she has ups and downs in her appetite, and she is at the low end of her normal. Soon she’ll be back to eating everything in sight. She is perking up as soon as David or I walk into the room with food, which cracks us up. She is like a little puppy dog the way she comes and begs for bites of foods, its so cute! (and she does a great baby bird impression, opening her mouth and pecking her head forward). It never ceases to amaze me though, how clingy our little girl gets after hospital stays. Now granted, she is a snuggler by nature, but she turns into what I lovingly call “Velcro girl” – because she clings to us like Velcro. You try to pry her off, but her little arms just wrap around you so tightly. She practically climbs back up you.
We’re still working on getting her to not rub and scratch at her head, but we are unable to keep any kind of wrap or bandage on there to keep little hands off her head. She has pulled off everything I put on there. We go on the 24th to get her stitches taken out. I plan to take Becca to her PT appointment on Tuesday – it was one I didn’t cancel and I decided we’d go and just give it as much as Becca was up to. She needs the work out anyhow – and I know she will LOVE LOVE LOVE the chance to ride the tricycle. I hope to get David to upload the pictures he took with his phone while we were in the hospital – he took a couple of Becca in some really cute positions (she was asleep but in a strange position).
Thank you all for your continued prayers and support! And thank you to all of our wonderful nurses in the 5100
I can’t even remember all the nurses we had over the week – but you were all so wonderful to us! Thank you. (ohh and the nurses in the PICU that one night too!)
Tuesday, August 18, 2009 7:21 PM
Becca continues to do awesome recovering. She had her first PT session after the surgery today – she did great. Yeah, not the same endurance or strength, but awesome! She is going to get to start seeing Lisa again – the PT she saw when she was really little up until early this year. Lisa is now seeing patients at Lennox Baker (she was doing Home Health and kids who were inpatient at Duke). So happy that Becca and Lisa get to work together again! We love our other therapists, but Lisa has a long history with Becca, so its extra special. We go Sept 9th to get the Vagal Nerve Stimulator (VNS) put in. Here is a link to the website for the VNS
That can explain it better than I could.
I do have a prayer request – not for us, but for another child that is very near and dear to our hearts. We met Mackenzie (aka Z) when Rebecca was getting Chemo. She is the most amazing child I have ever met – or will ever meet. Wise beyond her years (heck, wise beyond MY years!) She has been battling cancer for a long time, and well – things are pretty grim right now. http://www.caringbridge.org/visit/mackenziebaysden
As much as I want God to heal her completely so she can grow old to help other kiddies with Cancer, I reckon the biggest prayer she needs now is just that God would be right there with her. That she wouldn’t be in pain, and that she can really enjoy her days – how many more she may be blessed with (that her days would be a blessing). (I’m gonna cry now, thinking about the world loosing this child) Thank you friends.
PS – check out some of the pics I added of Becca in the hospital
Saturday, August 29, 2009 9:35 AM
We got the stitches out this past Monday. That was a horrible experience. The wounds had healed almost too nicely, and so getting the stitches out was really hard. But Nurse Brandi was awesome and was really good with Becca. We’ve known Brandi for a long time in the Neuro clinic and she knows Becca well. After Becca got all the stitches out we visited the Treasure Box and Becca got to pick out a prize for being soo good. Becca is back in school after the surgery, and back onto her regular PT/OT schedule. She is so happy back in school. Actually Tuesday it was rather priceless. She practically raced down the hallway. I’ve never seen her walk so well and so determined to get where she was going! Granted the rest of the week didn’t go quite so nicely, but oh well.
Because Ms. Katie isn’t working at Lennox Baker any more we’ve had a bit of change in our PTs. Rebecca gets to work with Lisa Mangino again! That’s right – the same Lisa who worked with Becca for so long. We are so excited to have Lisa back in our lives again. Surgery for the Vagal Nerve Stimulator is still scheduled for September 9th. It should be an out-patient surgery, unless there are any kind of complications. Even if Rebecca has some issues waking up from anesthesia we’ll stay overnight. Granted, we want to be in and out, but we do have a safety net if needed.