Wednesday, September 30, 2009
The only thing holding us up now...the darn fever! Still no cause for it, every test has been run that is possible so it either boils down to a drug fever caused by something she's on, or a bug that she's picked up during her stay. The Dilantin has been cancelled effective this afternoon, and fever is a potential side effect of that, so we'll soon see if that was the culprit.
Everyone is talking about Friday to release us so hopefully her fever is long gone by then.
They are doing a urine culture to see if the fever could be caused by a UTI. All of her bloodwork and cultures continue to be normal. We also got reassuring news that the staph variety from the original culture is Staph. epidermidis which is treatable with Vancomycin so even if the infection were real (and everything indicates it's not) it's manageable. The other possibility is this is a reaction to the Vancomycin, or related to the thrush.
We wish we could either get her over this fever or get to the bottom of it quickly because this will be the only thing to keep us here. Otherwise she's ready to be released to Cincinnati Children's for rehab. We are still not clear on if we can do outpatient instead of inpatient, we need to learn more about what insurance will cover, differences in services, etc., but being back home will make such a difference for us.
Daniel's first birthday is on Saturday and although Julia's health is the priority I will be pretty disappointed if I miss it. I miss him so much and want to be home again badly. Fingers crossed that it will be soon.
Tuesday, September 29, 2009
- Julia began running fever early Monday morning and we've been treating it with Tylenol. No one is concerned at all, her blood work, cultures, and incisions are all normal so it's not related to infection. Fever can happen after major surgery or it could be a response to the antibiotic. I still don't like it but I realize it's not anything to worry about.
- Last night she began having some major muscle twitching and spasming. Again, no one thinks it's seizure related. Dr. Chugani this morning thinks it's a reaction to medication and he's stopping her Dilantin effective immediately since we've started her on Trileptal.
- Last night we were also able to get her to eat more, she had a few bites of green beans, mac and cheese, french fries and yogurt. It's a great start!
- She is also seeming much more herself, her language is improving steadily, which is the biggest boost of all to my improved mood.
Dr. Chugani wants to get us home within a few days, he feels she will recover best at home and we couldn't agree more. He reminded us today that she had major surgery...the recovery takes time and he said he's seen all kinds of behavior that can't be explained but is all temporary.
Thank you for the wonderful comments and emails after yesterday's post. It felt good to get those feelings out and it felt great to hear all the love and support from everyone.
Monday, September 28, 2009
Julia is doing well, but her recovery isn't going as smoothly as we would have hoped and it's really got us down. We are tired, emotional, sick of being in the hospital, and none of that is helping with our coping skills. We hoped and perhaps naively thought that she'd have her surgery, recover for 3-4 days, and be good as new. Unfortunately it's not happening like that. And the bumps in the road are most likely that, just bumps, but there's been so many that they're starting to feel more like pot holes.
First there was the staph scare, which necessitates a 6 week course of IV antibiotics. For a child who cannot STAND to have anything in her arm, that request feels like 6 months to us. Last night as she tossed and turned she pulled out her PICC line. It wasn't a mess and didn't seem to hurt her but it was extremely disheartening. Now she has to have another one put in, in a short procedure that requires sedation. Ugh. They can't do it until tomorrow, so that just adds more time to our stay.
Then there's the physical issues...and they are not minor. She has substantial weakness on her right side and while the strength is improving daily it's not anywhere close to where it was when we walked into the hospital. Her left side is also very uncoordinated. The PT department here looked at her today and said they would recommend to keep her in the inpatient rehab program for two weeks. Two weeks, you read that right. We are working with them to get her transfered to Cincinnati Children's since there is no reason for us to be so far from home for something like that, but it's disheartening to learn that we've got more time before things will go back to normal. And then there's a part of us that wonders, will they ever go back to normal?
She's also so frightened and sad. She lashes out when anyone tries to tend to her, even if it's me trying to change a pull up. She is sick of the hospital, sick of nurses and doctors. We realized today that she has thrush and that's most likely why she hasn't been eating or drinking. We've started some medication to clear it up but it's just one more hiccup, one more complication, however minor, keeping us from getting back to normal.
I have censored a lot of my fears and sadness over this process from the blog because I don't want people to worry but right now it's hard to do. None of the doctors are worried and say that her moodiness and irritability are age appropriate. I thought of this surgery as the answer to our prayers, I looked forward to the outcome and seeing her progress. And logically I still realize that we are in the healing stage and to give her time. More and more we are just sad...yes, the seizures are gone. I am grateful for that. But I also want my girl back.
(I can't be a total downer...she did sing "Wheels on the bus" with me just now.)
Sunday, September 27, 2009
- Dr. Sood came by this morning and said she looks great. All of the staph cultures have been negative except of course the one from surgery so good news there too. Medically there's not much more of a reason to keep her here so after PT assesses her on Monday and we get the home health care set up for her antibiotics, we should be good to go! I'm hanging my hat on Tuesday.
- We've been getting her to sit up in bed for short periods of time and she's already gained quite a bit of strength back. She can keep her head upright now. Her right side is getting stronger and stronger, she's now moving her fingers too.
- This morning she told me "lay down" after she'd been sitting up for awhile. She also has been asking for massages...can't think of how to phonetically spell the way she says it but those who know her can picture it. She has always loved for people to lightly run their fingers over her back, arms and legs and we call them massages. She has been asking for them all morning and I'm happy to oblige!
- Later this morning we're going to get her up and out of this room. They're going to get us a wagon and pad it with pillows and we're going to wheel her around the halls. I think it will do her some good, she definitely has some depression from being in this bed and room for so long.
- She still has not had anything to eat since we've been here...10 days now. She's had things to drink but no food. Yesterday she asked for a cracker but then wouldn't eat it. I think the Vancomycin is messing with her stomach. She needs to eat and poop before we can leave so hopefully we can tempt her with something.
That's it for now! Fingers crossed for a good day and some good progress!
Saturday, September 26, 2009
Just had to share the news!
It's been kind of status quo for the past 24 hours. She got her JP drain out yesterday as mentioned in the previous post and her bandages off. That seemed to go some way in making her more comfortable but she's still having some discomfort and cries quite a bit. The doctors as well as us don't think it's pain related, her heart rate isn't rising and she sleeps in between crying, so I wonder if she could be having headaches or is maybe just feeling funky after having so much of her brain altered. She is very quiet but in the past 12 hours has started saying "no" and "milk" so we're making some progress. Still no seizures which is wonderful, and she is using her right side quite a bit more than yesterday which is very nice to see.
She'll be getting the last drain out today, the EVD drain. After that is out we can give her a shower, wash her hair, get her dressed, sit her up...all kinds of things that will hopefully go some way to making her more comfortable. We saw neurology awhile ago and were informed that PT won't be coming by today because it's the weekend. More and more I'm wondering why they scheduled her grid surgery for Friday and resection for Tuesday when it seems everyone else is the opposite schedule. So far it's added nothing but frustration. An extra day of grids, possibly more time in the hospital because nothing is going to happen this weekend with PT...it's very frustrating. So now the likelihood of going home Monday has gone down. We will do what we need to do to get well as quickly as possible but needless to say, we are ready to go home.
Friday, September 25, 2009
Dr. Sood came by this morning and said the fluid they tested yesterday was negative for staph. I'm assuming the fluid is cerebrospinal fluid (correct, other surgery parents?) The relief I felt at that cannot be put into words. It seems almost certain we were just the unlucky ones who had to deal with a contaminant but at this point, I almost don't care. I hate that we have a 6 week IV antibiotic course in our future but it almost seems minor compared to the alternative.
The other good news is that she gets her JP drain out today along with the dressing. The dressing seems to really bother her and I'm hoping once those are both out she'll be a bit more comfortable. She'll get the remaining drain out tomorrow.
She hasn't really said any meaningful words since yesterday but that is because the brain swelling is at it's peak right now...so no cause for alarm, although I'd love to hear her sweet voice do something other than cry. That has been hard because it just tears at my heart, but knowing this should be the last day of this makes a huge difference.
Thursday, September 24, 2009
Julia's Nana and Aunt Nana came up to see us today, they've been watching Daniel back home and I was so ready to see him again. He got so excited when he saw Julia and wanted to get in her bed with her. I took him outside to get a little fresh air for awhile which was so nice.
Here's our girl today...you can see the majority of the swelling is in her right eye since she's been laying with her head to the side. We've been trying to slowly prop her head up to get it into a central position but she seems to be more comfortable this way.
Dr. Chugani also came and talked to Michael (unfortunately I missed him when I left to go shower and change). He strongly feels it was a contaminated sample because of some very technical factors that I won't go into because I'm not sure I fully understand them myself. :) He seemed very regretful that we have to put her through this intense antibiotic course since his gut feeling is that it's ultimately not necessary. But at least we'll know we're covering our bases and she'll be okay. I can't begin to explain the relief I feel.
She's been more awake this morning, still a little fussy but wanting to hold our hands and saying "mama" which is music to my ears. I'm hopeful that she'll start to wake up a little more as the day goes on and that by tomorrow we'll be on a steady uphill trend. Unfortunately Dr. C thinks her swelling will be worse tomorrow since that's just the way it goes.
Thanks for all the prayers and love...
Wednesday, September 23, 2009
They started her on an IV course of Vancomycin and for now plan on sending her home with a PIC line and a 4 week course of IV antibiotics. I asked Dr. Chugani how we would know if it was a real issue or not and he said when they determine what type of staph it is they would know. He said they haven't had an infection in years and years and it would surprise him if this is one. I hope he is right. For now we are scared to death and for once I think Michael is holding it together better than I am. (Love you M.)
I of course immediately turned to Google and found several stories of something like this happening after epilepsy surgery and while it was an ordeal in and of itself it didn't have any lasting implications. What makes this a little hard right now is she is still so out of it from surgery that we can't rely on behavior as an indicator that all is well.
Again...prayers, good vibes, all of it is needed and appreciated.
Today has been a good day...quiet, but good. Thanks to other parents who have gone before us, I know what to expect for the first couple of days after surgery...which is not much. She opens her eye every so often (just one because the other is very swollen), moves her left hand and left leg, and then drifts off to sleep again. Her right side is very weak but she has moved both her leg and arm. Dr. Asano saw us for a bit earlier and said her tone looks good which indicates the ability is there, just weak for the moment.
She has talked a little more today..."yes", "more juice", "watch a show"...she's in there, just recovering. She drank a cup of apple juice which is by far the most she's had to drink since we've been here.
We also haven't seen any seizures which needless to say is very, very nice.
For now things look good!
Tuesday, September 22, 2009
There was going to be some time before she would go to recovery and then ICU so we took that opportunity to leave the hospital and get some dinner which was SO nice. We got a call on the way back that she was already in ICU and we just saw her. She's sleeping peacefully and looks wonderful. The nurse said she's already said "take it off" when they put a blood pressure cuff on her leg and "no!" when the doctor shined the flashlight in her eyes. That's our girl...giving it to the man. Maybe this is premature...it probably is...but Julia can be very hard to understand, especially by strangers. The fact that this nurse could understand her was very exciting. And the fact that she's talking is VERY reassuring!
We are back at the International House to try and catch up on sleep. We left our numbers with the nurse to call us if she wakes up and wants us so we can rush back. Hopefully she'll get some good sleep and we will too. We sorely need it, the past four nights have really taken their toll. We'll be back by her side bright and early tomorrow. Signing off...
We are so relieved this is over! Now we can focus on healing. Thank you for all of your support and prayers!
To answer a question of Elaine's and maybe explain it to everyone else...the MST procedure isn't guaranteed to happen but they are framing it as a likely outcome. The three lobes, temporal, occipital and parietal will be removed first, then they will test the motor cortex again to see if the spiking that was previously seen was secondary to the dysplaisa in the three lobes. It's just wait and see.
We are so touched by the emails, comments, Facebook posts, balloons and gifts, and care packages that we have received. We can definitely feel the love. It's helped to keep us propped up and you are all here in spirit.
Will update as we know more!
Monday, September 21, 2009
Julia's sleeping a lot and having a much better day than yesterday. No more procedures on her (that I know of anyway) so it's just a matter of keeping her comfortable until tomorrow.
Barring any major happenings this is probably the last update for the day. Expect lots of surgery updates tomorrow.
He said if it was his child this is the route he would want to take. That speaks volumes and we agreed that this is the route to go. The other option would be to entirely remove the motor cortex...this would ensure seizure control but would leave her with a limp and a useless right hand. There is no way we can choose that option at this point.
With this option we do run the risk of having to repeat the surgery at some point when she's older. But Dr. Chugani feels this will get us through the critical early years when cognitive development is so important and that removing the three lobes previously mentioned will improve that. And hopefully that won't even be an issue and this surgery will take care of things. It's a bit of a gamble but one we're willing to take. In his words, at least we will know we gave her every shot to have full motor function.
The conference still has to take place and Dr. Sood needs to be in agreement before any of this is a go so we'll get confirmation later this afternoon but most likely this will be the plan. Keep those prayers coming!
I haven't seen any seizures since she woke up so fingers crossed they're being controlled now. Dr. Asano will begin the motor and sensory mapping at 9:30 this morning and we'll get an update on the results from the surgical conference sometime this afternoon as well as a time for surgery tomorrow. Tomorrow! Feels really good to say that.
I have appreciated all the wonderful comments, especially from those who have been in our shoes. I spent a good amount of time reading Jackson's story, a sweet little guy from Houston who had his surgery done here last year. I was sorry to read that he also had a difficult time during this stage but relieved to see we are not alone. You hear from the doctors that this stuff is normal but it really sinks in when you hear about other stories.
I will update later tonight after we hear from all of Julia's doctors.
Sunday, September 20, 2009
Tuesday seems eons away. I'm hoping that tomorrow when everyone is back in the hospital we can get some reassurance that everything is okay for now. Weekends in the hospital are just awful when you want to get answers, no one is here.
I am not a crier in the hospital but my voice sure has been wavery today. I appreciate phone calls most of the time but I'm just not in the mood to talk right now. This stuff is just hard and there's nothing else to do but get through it. We just have to get through the hours until surgery.
Her poor face is so much more swollen than it was when I left her at 8pm. Both eyes are almost completely closed and it's heartbreaking to see her like that. She's still just as sweet and happy as ever and it doesn't seem to bother her very much. I don't even think I'm going to post a picture of it (don't want to upset the grandmothers, you know). Everyone assures us it's very normal and to be expected.
So apparently they want her to have at least a few more seizures and a chance to review the data before any meds will be started. She'll get Versed if she has another monster cluster but other than that we wait until morning and for neurosurgery to take a look at everything.
I've been spending some time tonight reading once again through Sophie's story for inspiration, strength, guidance...the usual. Tonight I found a nuggest that made me smile... we are in the same room, 586, that she was at this stage in the game. Just a little detail but kind of neat.
Saturday, September 19, 2009
And this is just now...you can see how swollen her left eye has become.
The frustrating part...STILL no seizures. We're getting a little nervous, to be honest. How could a child who produced daily seizures you could set your watch to suddenly just stop? Is it the morphine? Surely not, right? We've seen a couple of single twitches that look like perhaps a cluster is about to start but then nothing. Dr. Asano looked at one on the EEG and said there was some spiking but no seizure associated with it. We've got all day today and tomorrow but we really need to get some seizures recorded. She did not want to cooperate with some of the mapping that Dr. Asano attempted today, naming pictures, etc. She also still hasn't had anything to drink or eat. This morning she asked me hopefully "all done?" as in, can we go home now? I wish kiddo.
Sounds weird, but please pray for seizures!
She's been running fever and the nurses say that can be normal. Tylenol has been helping to bring it down but it hasn't gone completely away. Her blood pressure, urine output, breathing and ICP (intra-cranial pressure) are all good so they're not worried about the fever at this point. She is not happy...and it's very hard to see her like this and know that we've got at least 7 more days of it. I have to keep reminding myself why we are doing this because it's easy to forget when all you want to do is scoop her up and take her home. She likes to hold my hand and have me right beside her which I'm happy to do.
We should be out of PICU by noon tomorrow and in a regular room. Will update then!
Friday, September 18, 2009
We went to get some lunch and ran into Dr. Chugani in the hall. He basically reiterated what Dr. Sood but it was great to talk to him and get that extra reassurance. I asked him if we would be keeping her on Vigabatrin after the surgery and he said he'd like to get her off but we'd probably keep her on it for a little longer and then repeat the EEG to see what it looks like. Darn...she's been on it so long (since she was 6 months old) and I'd really like to see how she does without it. Either way it sounds like she'll be off it soon.
ETA: Thought I'd throw in a few pictures of Julia before surgery this morning:
To give some more detail on Dr. Asano...he's the guy who will be doing the motor and sensory mapping as well as coming up with different surgical plans in case plan A is not able to be carried out. She will be off medication for the rest of the day so that as many seizures as possible can be recorded, then Dilantin will be administered starting tomorrow through her IV. We will also reintroduce Vigabatrin but if she's not able to tolerate taking that orally she will have the IV Dilantin as a backup. They will then discuss the data in Monday's surgical conference and decide what should be removed.
Julia is in great spirits, even though she is concerned by the fact that Daniel is not with us. I can't begin to tell you the emotions we are feeling, although I know the parents that have been through this before know exactly. I got the kindest email from Elaine overnight giving us a recap of their experience on this first day...it is so calming to hear from others who not only have been through the same thing but also in the same hospital with the same doctors! So thanks again Elaine.
I will update later this morning and keep everyone posted throughout surgery.
Wednesday, September 16, 2009
to this! It's probably the most hair she's had cut off at one time. I miss the longer hair but oh well, it will grow back.
We are ready...well, as ready as you can ever be to have your child undergo a surgery like this. I think the anticipation has been just as hard as anything else, so it will be nice to get things underway and know that every day brings us closer to getting Julia to her full potential and a life without seizures.
Thanks for all the good thoughts and prayers!