Sunday, March 28, 2010

“… know this child will be gifted, with love, with patience and with faith…. She’ll make her way!”

You may have heard through the grapevine, or you may be totally shocked to find out right now, that we ended up going to Cornell Hospital in Manhattan on Friday evening. We just got back a little while ago, so it was a short stay, thank goodness. The accommodations at this hospital are… ummm…. unfavorable/uncomfortable/uninviting. We’re totally spoiled after our stays at Westchester and how child/family friendly the Children’s Hospital is. Boy, were we in for a rude awakening (complete with bulletproof glass surrounding the nurses station).

Let me not rant. The neurologist we’re supposed to be following up with, as it turns out, isn’t exactly comfortable treating Sarai while she’s on ACTH and still having spasms. (Thanks for telling us that before we left the hospital and before I drove 45 minutes to have a follow-up appointment with this guy.) He didn’t think we should have been discharged from the hospital while she was still having spasms and felt that Dr. James basically should have had us following up with him. (Of course he gave us the option to do that, but he doesn’t accept ANY insurance, and it’s a paperwork nightmare. Have I said that before?) So the new guy said we should go to Cornell because they’re better equipped, have more experts and a whole team available to diagnose rather than an individual.

We got there Friday night and they hooked her back up to the EEG. They said the good news is there’s no hypsarrhythmia (the “background” looks mostly normal, which Dr. James already told us). The bad news is that she is sometimes having up to 90 mini seizures within an hour and a half. It looks like nothing more than a head nod, but it’s a seizure/spasm. So they put her on an antiseizure medication, Topamax. Dr. James also said this would be coming if the spasms didn’t totally stop.

We’re supposed to follow up with them in two weeks for an overnight stay and another EEG to see how the Topamax and ACTH are working. The ACTH will soon have to be weaned off and if the Topamax doesn’t do the job alone, more medications will be added. We’re not totally sure we’ll follow up with them. The overnight experience was really awful. (I did tell the doctors how I felt before we left.) We’re going to call a pediatric neurologist at Westchester and see if he can give us an idea of what he thinks. I think, though, that we really need an epileptologist. So I’ll be asking about that.

I have to tell you that Sarai is as happy as a clam, cooing and smiling away. (It’s even getting a little annoying…..Noooooo, I’m just jokin’ ya!) The ACTH makes her cranky and very hungry, the Topamax is supposed to make her sleepy and lose her appetite, so I’m thinking they kind of cancelled each other out. But, what do I know?

If you didn’t already know, the song in today’s title is Wonder, by Natalie Merchant. We heard it in the car on the way home from the hospital today. Sure sounds like she’s singing about our little girl!

Tuesday, March 23, 2010

“Sweet home [Central Valley], where the skies are so blue!”

I was afraid to get my hopes up, but here we are! Dr. James came in last night and said we would be good to go home today! He read the EEG while he was there. It looked like she was still having small spasms, so he brought up the ACTH back up to the original dose, but it’s one big shot rather than two smaller ones.

We waited around the hospital until about noon, and we were free birds! We’ve got a visiting nurse coming tomorrow to check in on us, make sure we’re comfortable with all the equipment and with giving Sarai her medication. So far so good there. Then we see her pediatrician just to check in, Thursday we see her neurologist. These guys will just check her out and get all the info about what’s been going on for the last three weeks.

THREE WEEKS!! Who ever would have thought we’d be in the hospital for 3 weeks?! We missed the whole month of March! It feels so good to be home. I have a million things to do, cleaning, groceries, prescriptions to fill and I’m not even phased. I made meatloaf and perogies for dinner. I can’t tell you how good it felt to chop an onion, and the apartment smells so good. Luckily, we’re home in time for Adam’s birthday. It’s tomorrow!

Happy Birthday Adam!! You are an amazing dad, I love you to pieces, and Sarai just adores you! I don’t know how I would ever have gotten through all of this without you. You’re THE BEST!

Monday, March 22, 2010

“Can’t read my, can’t read my, no he can’t read my poker face…”

I can’t even believe I have to tell you all this, but we are STILL in the hospital. Sunday night, Dr. James was coming to tell us all the blood work came back totally fine and that we could go home, when we had to share with him that we’ve noticed some possible seizure-like movements. They don’t look anything like what we brought her in for, and they’re not really in clusters lasting a couple minutes like the spasms used to be either. It looks exactly like a startle, and it usually happens when she’s drifting off to sleep. He gave us several options; increase the ACTH, start her on an anti-seizure medication, go home and ask our neurologist on Tuesday, or get another EEG and see what they really are. We figured… as long as we’re here, and we want to be sure before we play around with any more medication, and we don’t want to delay treatment if it’s a seizure or more spasms…. So she’s hooked up to the EEG again, since Sunday afternoon.

I’m afraid to even hope, but there is a possibility that this could just be a startle reflex and not a seizure at all. We’ll hopefully soon find out.

And you know, last time before we started noticing the spasms, Sarai started to stop smiling and cooing. Now, she’s cooing more than ever. She even started to make a new (loud!) noise! It’s too adorable. I recorded her doing it and I play it back to her, I’m not sure she knows what to think. It’s the cutest thing.

So we’re just waiting. I have no idea how much longer we’ll be here, it’s been 19 days already. We could go home tomorrow, or in another week. Everyone here knows I’m done. I think the nurses are nervous and the residents are afraid to come in here. I’ve had it with vital signs every four hours and re-do’s of blood work because of human error. Calgon… take me away!

Friday, March 19, 2010

“Let’s get it poppin’! I’m in Miama trick!”

No… wait… I’m not in Miami…. I’m STILL IN THE HOSPITAL! Sarai’s blood work this morning showed that Sarai has a rather high white blood cell count (average is between 7-13, hers is 28.5). They’re doing some tests to make sure she doesn’t have an infection and making us wait here for the results, until Sunday. Shoot…. Darn…. Geez….D’OH! Can a girl get a break??

On the brighter side of things, our tough little peanut had her 24 hour EEG the other day and it shows great improvement. Still has abnormalities, but the neurologist said he’s “delighted!” He said the best response ever reported on the ACTH has been within 24-48 hours, and he’s hardly ever seen that. Some kids take up to 4 weeks to respond, some don’t respond to the medication at all. She was spasm free by the 4th day, he said the best we could really hope for. So that sets a good standard that her EEG will just get better and better…. We hope! She's been cranky, but a little more like herself. She's been smiling a little! Ah, I missed that.

When we leave, we’ll be giving Sarai one shot a day, and taking her blood pressure and checking her glucose daily. Her first appointment with her neurologist for follow-up is this Tuesday, and he’ll be in charge of adjusting the dose and monitoring once we’re home. I hope he’ll have a nice, long talk with Dr. James so they’re both on the same page.

Well, here we sit.

Tuesday, March 16, 2010

“Wild horses, couldn’t drag me away…”

Hi friends. We’re still in the hospital, going on almost 2 weeks! Time really does fly here. I think I said that before when Sarai was in the NICU, and it still holds true. We’ve had quite a few visitors, and are just letting the days go by. Sarai hasn’t had a spasm since Saturday afternoon!! Dr. James is very happy with that, he said she’s a “fast responder.” Starting this morning, they cut the ACTH to one shot a day, this will reduce the chance of her having any side effects. Her blood pressure has been rising a little, so they want to bring the dose down before it goes any higher. Hopefully we still won’t see any more spasms!

Sarai has been exhausted, sleeping most of the day, and still isn’t herself. She’s definitely lost some muscle tone, to be expected after almost 2 weeks in the hospital. I’m trying to stretch her and get her in a sitting position as much as possible, but it’s really hard to get her awake for more than a few minutes. They did some blood work and took a urine sample to make sure she doesn’t have any infection that could make her sleepy. There was a small indication that she had a urinary tract infection, so they did a second test to be sure the sample wasn’t contaminated. (They were going to jump right to “cathing” her, but I almost lost my mind, and then they did something less invasive. Sheesh.) Turns out, no UTI.

Dr. James told us last night they were going to do the EEG tomorrow thru Thursday to give Sarai a day on the lower dose of ACTH and see how she does, but wrote that it was to be done today. So we had to set the day-staff straight, they finally called him to confirm and it will be done tomorrow after all. (I swear, I don’t know what would go on if we weren’t here. Did I tell you about the nurse who brought the wrong medication? That’s a good one…)

Sarai had an echocardiogram yesterday. Overall, that doesn’t show anything of concern. But it did show that she has a small patent ductus arteriosus (PDA). That’s something they talked to us about in the NICU, it’s a valve that hasn’t closed on it’s own yet and is very common in premature babies. She has no complications from it and it should close on its own eventually. We will follow up with that when she’s about a year old.

We’ve had PT, OT and speech people stop today by but Sarai was too sleepy. They’re going to try and come by again in the morning. The music therapist also stopped by while she was resting. She sang her the must beautiful lullaby, I wanted to cry.

Poor baby is going to spend her very first St. Patrick’s Day hooked up for the EEG. But hopefully we’ll be out of here on Thursday after it’s done, maybe Friday since Dr. James doesn’t come until the evening to read the reports. It’s really time to go… my fangs are starting to show and the claws are coming out. This morning I almost decapitated a med student who’s been very nice to us. Quick message to him…. Sorry Dr. McViking, but I can’t help but shoot the messenger.

Friday, March 12, 2010

“That's the time you must keep on trying…,Smile, what's the use of crying”

(That will be the last depressing title for a while, I promise.)

Good evening.

Everything is going pretty good over here. Today was Sarai’s 3rd day on the ACTH. Other than the pharmacy finding it impossible to get it up here on time (that wouldn’t be happening if Julie or (Christin’s) Steve worked there!), things have been pretty smooth. Her spasms have been MUCH more subtle, so subtle I was actually “arguing” with a nurse that she was in fact having one yesterday, the nurse didn’t even see it. She’s also been having a couple less each day. This early improvement is very encouraging to Dr. James. We think, but we can’t be sure, that he actually smiled and appeared optimistic!

I gave Sarai my first shot this morning. Poor baby… poor mommy! Adam’s up for his turn tonight (if they ever get here with the shot). We’ve got a practice syringe and a roll of toilet paper for practice… almost the same thing…. Or not! So far she’s not having any side effects, other than eating like a horse. Her blood pressure is good, and so is her blood sugar. She’s up to 15 lbs. 6 oz.

Dr. James is going to order an echocardiogram for Monday, just to get a baseline. That will be an easy ultrasound-like procedure, but as usual, she probably won’t tolerate it very well.

The physical therapist came today. She hopes to visit a few more times before we leave.

We got some live music with “Mike” today. Very cute!

A few visitors are coming this weekend, including lil sister & bride to be… KATIE! Oh, no. Heaven help the sailing wing!

Thursday, March 11, 2010

“Nobody said it was easy, nobody ever said it would be this hard. Oh take me back to the start.”

Hello everyone. I thought I’d let you all know the ACTH was started yesterday. They gave her a shot in the afternoon, and for the time being, it will be given at 8pm and 8am. The shot is a gel, so you can imagine how much it must hurt going in. : ( Today they gave her some kind of numbing cream (the doctor said it was like icy hot) that they put on an hour before the shot. They had to seal the cream on with a big Band-Aid, so she cried when that came off, and the cream really didn’t make a lick of difference in how upset she got. (I may indulge them trying that once more, then, foggedaboudit.) She’ll also be given zantac to help prevent upset stomach and ulcers. From reading what a lot of parents say about ACTH, lots of kids end up having feeding problems because of the upset stomach issues. Plus, Sarai is still getting B6 every 6 hours. They crush that up and I give it to her in a bottle or mix it in with food, and it makes everything taste horrible. So between that and the ACTH, I have a feeling we’ll also have a hard time getting her to eat. (So far with the B6, it’s been pretty ok giving her a spoon of food with the vitamin and chasing it with a spoonful of regular food.)

We’re going to be on a tough schedule with medication when we get home. A woman stopped by today who will be in charge of helping to make sure the medication and supplies are all ordered correctly. She said she assists with about 5 families a month who have kids going home on ACTH and they’ve seen great results. Gives me a little hope!

I asked today about getting a physical therapist to stop by (Aunt Kathy suggested that to mom), and starting tomorrow, she’ll stop by 3x/week (which probably means we’ll see her 3x total). But no one will replace our Vanessa!

Activities here have been fun, they do such a great job for children. Yesterday I took Sarai to a magician and a drum circle. Today was a puppet show, but she fell asleep just before, and later on this evening there’s a “rock concert.”

Being us, we’re still trying to find humor anywhere we can. The other day, a nurses’ assistant stopped by to take vitals. I wasn’t paying much attention when Adam chimes in with…

Adam: Yeah, the nurse got mad at me last night.
Me: Why?
Adam: Because I pulled it out too fast.
Me: WHAT??
Adam: The thermometer!!


Tuesday, March 9, 2010

“Well goodnight you moon light ladies, and rock a bye sweet baby James…” March 9, 2010

Things are looking a little brighter over here for our little angel. The other day they started her on vitamin B6. According to the neurologist (as we call him, Dr. James Taylor), giving B6 is a first treatment for infantile spasm in Japan, but a study will never be done in the US to determine the exact effectiveness because there is no money in it. (Boooooo.) Mom and I noticed Sarai was a little more herself on Monday, cooing and a little more awake and active. Dr. James said that the “background” on the EEG (her brain activity when she’s not having a spasm) shows a subtle improvement since the B6. I think he originally felt that a positive response to the ACTH was a long shot, but he feels that with her most recent MRI looking good, no real red flags in from her head ultrasound, and the little improvement after starting the B6, he said, “My gut is telling me that she’s going to respond to the ACTH.” We’re going to have a long road, and it’s a long shot, but we’re going to go the distance!

The EEG is off. That was nasty. They glued the electrodes on with, basically, superglue, and took them off with, basically, nail polish remover. Could this process be any more like torture? I don’t think so. They smeared her head with bacatracin, and she’s going to have glue in her hair for days. But it’s just so nice to have her out of her crib, be able to walk her around, snuggle with her! She already seems perkier. She had a big dinner, cooed and even smiled a little. I miss her smiles.

The ACTH should be here tomorrow. Here we go. Let’s pray it will stop the spasms with no side effects!

Sunday, March 7, 2010

March 7

Thanks to everyone for your thoughts and kind words. It really means a lot to read all of your messages.

We’re still in the hospital. Sarai has been on the EEG for two days now, she might be taken off tomorrow, but most likely Tuesday.

The EEG shows that it looks like Sarai is having infantile spasms. It’s a very rare condition, a kind of seizure disorder. Once a child has a normal EEG, they almost never develop this, so to quote the neurologist, “This isn’t supposed to happen” They began giving her vitamin B6 last night (they grind up a tablet and we give it to her in applesauce) to try and maybe improve the spasms, but so far that’s not really happening. They’re going to give her another day, and will then begin a treatment of ACTH, a steroid used to treat infantile spasms. The ACTH is administered with a shot once a day, and this course will last 10-12 weeks. We’ll be in the hospital 10-12 days while they monitor her for any complications, and there is a possibility for several. There are a lot of unknowns here… the ACTH may not stop the spasms, she could have side effects, she may have a list of complications from the spasms. The chances aren’t great that the ACTH will be successful and that she’ll begin catching up again with her developmental milestones… but there’s still a chance, so we’re all trying to be hopeful. The good thing that we keep hearing from the doctors is that it sounds like we caught it really early. Responses to the medication are much better when treated within a month of symptoms, and we’re well within that.

Mom’s been here for the past two days, she’ll stay with me again tonight in the hospital and Adam’s going to work. Adam’s off for the next two days.

I pray we’ll have some good news by the end of the week.

Thursday, March 4, 2010

March 4, 2010

Hi everyone. You know they told us when we were in the NICU with Sarai that having a preemie is always 2 steps forward, 1 step back. We’re experiencing a step back right now, so I thought I’d update you all on what’s going on.

A couple weeks ago I noticed Sarai wasn’t as smiley or cooing nearly as much. Her therapists said it could be teething, a growth spurt, or a cold coming on. A couple days ago I also noticed her clenching her body, then releasing, as if she were constipated (which she was). She doesn’t change color, had no fever, didn’t lose consciousness, I didn’t think anything of it. But after doing some research, it seemed that there might be much more to this clenching.

We came to the hospital Wednesday night, we’re back at Westchester in the pediatric unit. They did a head ultrasound today that showed improvement with the PVL (which we already knew). They also did an EEG, which shows some abnormal activity. We’re waiting for them to now start a 24 hour EEG (which could go many hours beyond) any time now. That will give a much better indication about what’s going on. So we’ll see what it says. It looks like we’re going to leave here on some anti-seizure medication.

We’re very comfortable in our room here. Each room in the pediatric unit has a little pull out couch and a bathroom with a shower. Adam and I both stayed last night and we’ll both be here again tonight. Adam’s supposed to work tomorrow, so we’ll take it one day at a time.

Just when we think we’re starting to understand what we’re dealing with…. I don’t even know what to think.

I know you’ll keep us in your thoughts and prayers. We need it…