late night

Caroline isn't very interested in sleeping tonight. Alas, I am up, watching Law and Order and Caroline is playing with her Fisher-Price ring-stacker. It's a great toy. No batteries, no lights, no annoying music. I wish they made more toys like this. Everything these days lights up and dances across the room, all of course, while buring up 8 D batteries.

Caroline has teeth

I can't remember if I posted this latest news, but our daughter now has 2 teeth that are coming in. We discovered this by chance one day when she bit me!

She is doing well

Many people have assked about her doctor's appt. It went very well. She is doing marvelously for her age. Other than the physical weakness, she is back to her usual giggly self. The neurologist emphasized that it may be a while before she starts crawling. It take a while for the neuromuscular connections to regrow and the biggest muscles in the body take the longest to repair.

i've been on a blogging vacation

After a tough couple of weeks, I needed a break from the blog. I am back now and I have a lot of pent-up blogging to do.

Caroline is becoming quite a little person these days. She is starting to get into everything! When I lay her on the floor for play time, she will either roll over to where the dog is sleeping or roll towards the cord for the laptop, whichever happens to be closer. If it's the dog, then she will immediately grab whatever she can, a nose or ear perhaps, or maybe a paw. The dog lays there obediently pretending that nothing is happening to her or perhaps thinking that she is in doggie paradise sipping Pina Colodas with her dog-mates, rather than being explored by a 6-month old. If she happens to find the cord to the laptop, then I put a stop to that right away. Also, I have been using her "play yard" to keep her contained. No, it's not a cage. It's a yard. Just so you're clear. And no, I did not pay $150 for it. I found it on sale on the internet for $36.95 and free shipping. Can't beat that deal with a stick. Anyway, this "yard" is great. It is like a tent. There is a zip opening on the side, so you can crawl in and out, but you can also lock it closed if you don't want the baby crawling all over the place. There is also a sun cover with a SPF of 50, so it's nice outside too.

She is getting stronger everyday. Caroline is not crawling yet, but she is starting to move her body around in a creeping motion. She holds her head up well and sits for brief periods of time.

Tomorrow, we are headed up to Columbia to see the neurologist for a checkup. I anticipate it going smoothly. She doesn't appear to have any lasting neurological issues from the illness. I hope to have some definitive answers tomorrow.

We have started feeding Caroline solid foods recently. She has been eating mashed peas, carrots, fruits, etc. She seems to enjoy the food, but she appears to be more interested in feeding herself. Try cleaning encrusted sweet potatoes out of a squirming baby's ears! Oh, but it has been fun. I have also been giving her teething biscuits. "Cookies" is what I call them. She revels in the ability to feed these to herself (almost). They tend to end up on the floor, where the dog promptly eats them up.

Todd and I started looking for an apartment a couple weeks ago. We decided that our current apartment, although lovely in many ways, is simply too small to be comfortable. We have very liitle "crawl space" for Caroline and we really want a dishwasher (other than Lucy!). We found quite a wonderful place in Staten Island. It's 2200 square ft, which even I think is a lot. There are 3 bedrooms, a dining room, a real kitchen (dishwasher included), a living room, finished basement, and laundry room. Oh, and a yard and a driveway. Plus the place has 2.5 bathrooms. I daresay, it's quite the suburban dream. The lease has been signed and we are set to move in in less than two weeks. Aye. Not a stitch has been packed either. How do people with small children move? I almost don't want to find out, though I suppose I will anyway.

Caroline is home!

We brought Caroline home yesterday. It was a long 2 weeks. Thank you for all of your thoughts and prayers. We are glad to be home finally.

Caroline is leaving the ICU

We hope to be going home tomorrow! She is breathing on her own, nursing on her own, and crying now. We are very excited at all the progress she is making. She is still very weak and cannot hold her head up on her own or do the other things that she used to do. We expect that it will take a while for Caroline to get her full strength back, but the important thing is that she will eventually be her normal, happy self again.

She is off the ventilator!

Yesterday, Caroline was taken off the vent and put on CPAP, which goes in the nose and is less intrusive. She did well last night. I waited to post this news, because there was a chance she would have been re-intubated during the night. I am really looking forward to holding her, which I expect to do later today.

Thank you for all your prayers and support. We feel really blessed to have so many caring friends and family.

uneventful day

Caroline is moving a bit more than she was yesterday. She seems to be in discomfort a lot though (probably because she's more awake) and so we have her on a steady does of morphine to keep her calm. So far there has been no word on the test results for botulism, but I don't expect them anytime soon. She is getting better and that is all that matters.

things are going well

Caroline is still intubated (receiving oxygen through a ventilator) and will remain so today. The doctors have tried turning down the ventilator to see if she is ready to have the tube removed, but so far her responses (hyperventilation, retaining carbon dioxide...) have indicated that she is not ready. Maybe by Monday. We will see. She is definitely gaining strength back and moving around a little more. Last night, I had the doctor give her some Verset (sp?) because she seemed agitated and uncomfortable. She wanted to cry but couldn't, which was really difficult to watch. Overall she is moving in the right direction, and though we expect her progress to be slow, we expect a full recovery.

Living in the ICU

Living in the ICU is a difficult experience. For one thing, it is always day time. The lights are always on, so if you want to sleep, you really need to be exhausted. We spend most of the time sitting around waiting to hear some news-ANYTHING. This morning we all sat around waiting for the doctors to come by and tell us what was going on. Being in the ICU is generalyl exhausting because it is so busy and it's difficult to separate day and night so everything runs together.

This morning the immune globulin was administered to Caroline. It should shorten the recovery for her. The serum was delivered this morning at 8am by a courier. It then went to the pharmacy because this particular drug has never been administered by this hospital and they didn't know how to properly dispense the drug. Fortunately, they did a bit of research and printed up some instructions. The drug was administered without any problems. My mom firgures that the drug cost about $6,000 per CC, for a total of $45,000. Even though the drug is very expensive, it is usually worth it, because it will likely shorten the amount of time that Caroline must be on a ventilator and in the ICU. Without the drug, she might spend months in the ICU recovering; with it, it should be just several weeks.

This afternoon Caroline finally had her EMG. From what I could tell, the results were quite unusual, but completely characteristic of infantile botulism. Tomorrow, we should receive the results of her blood serum test, which will provide a definitive diagnosis.

They found the poop! (Todd posting)

FedEx can track a package around the world, but you send a poopy diaper down three floors in this place and it disappears into the ether. Well, the ether takes, and sometimes the ether gives back. They found the poop! It hopefully will be tested today, which could confirm that it's infant botulism.

We have a list of four items now, not even including the poop, that are way behind schedule and which no one seems very interested in being accountable for. The wrath of He Who Understands How To Motivate Bureaucracies is about to be unleashed on them.

She received the botulism immunoglobulin this morning, and we are hopeful that she should be improving soon. We'll see.

Otherwise, yet another day in the ICU.

-- Todd

they lost the poop!

We have been told that the lab lost the specimen. Now of course, it isn't important either. Yesterday, our poor girl had 3 enemas and a laxative and today the story is that they didn't really need the poop to begin with. Ahh!

She is scheduled to recieve the immune globulin from California tomorrow at 8AM. It, by the way, costs around $40,000. We're planning on letting the insurance pay for that.

Caroline was taken off the narcotic today. The doctors are trying to see how she handles the intubation without drugs. She has been trying to open her eyes, but she is swollen and it is very difficult for her. The swelling is caused by not moving and it is a normal experience in the ICU.

Todd here again

Some small news.

- We finally got some poop to send off to the lab. I don't know whose job it is to test it, but whoever they are, they're great people.

- They are sending off for some special botulism immunoglobin for her from California, which is exciting. If administered soon enough, and we may still be soon enough, it can significantly shorten the length of time during which they need medical support.

- Speaking of which, we are preparing for a long stay. She will be in the ICU for at least a few weeks.

So, we're settling in, trying to adjust to being here, and muddling along.

Thanks to everyone for your comments, emails and prayers.

-- Todd

this morning

Still no news. Her condition is very much the same this morning. She is still sleeping due to the sedation and seems to be breathing easily (with the ventilator). We should be talking to her doctors soon.

thank you

We are very thankful for your prayers for Caroline. She is doing well under the circumstances and being cared for by excellent doctors.

Thanks for the comments as well. I really enjoy reading them!

another update: if the NY State Health Dept decide that Caroline should get the antitoxin to botulism, the drug (or whatever it is) will be transported here from California. I'm not sure that it would help (to be most effective it needs to be administered within 24 hours), but botulism can require long hospital stays, so it is usually recommended to at least try the antitoxin.

update

Caroline has not changed much since Todd's last post. She is sleeping peacefully and has not been awake at all today. I suppose it is for the best, because she has a ventilator in and it is probably unpleasant. Todd just finished reading some Little House on the Prairie to Caroline. We have been playing her CD (ugh!) and talking to her a lot today.

The NY State Health Department has been notified about the potential Infant Botulism case; they are now hounding the PICU for "a specimen" to determine if this is in fact botulism. The doctors here are all saying that this is a classic presentation of infant botulism, so we are hopeful that this is so. The other potential causes of Caroline's illness are genetic and enzymatic disorders, which are much more complicated to treat (if they are treatable at all). We are praying that Caroline produces her specimen soon so that we can find out if this is botulism.

Todd GuestBlogging here

Last night Caroline wasn't able to cough, so she was re-intubated. It's unpleasant for her, although between the sedative and her general lethargy she's pretty out of it, but it is a load off of our minds, as she is now not in any danger of having breathing problems. She hasn't opened her eyes very much, but she is grabbing our hands and moving a little when we talk to her. We're playing her favorite CD (which I'm pretty sick of, frankly) and trying to make sure that we spend some time every hour interacting with her.

The leading diagnostic candidate is still infant botulism, with various neurological problems coming in second. There is talk of her getting an EMG (electromyograph) today to see if she is suffering from some form of demyelination; we're still waiting to see if a suitable doctor can be scared up to perform it.

http://www.nlm.nih.gov/medlineplus/ency/article/003929.htm

Even though we don't know for sure what's going on, the effects of these various diseases are all approximately the same: incapacitation due to muscular weakness leads to bad stuff like dehydration, pulmonary problems, etc. The good news is that, with the ventilator, stomach tube, pulse & oxygen monitor, & her IV, she is protected against just about any of the bad things that can stem from these problems, which is a releif. Hopefully a diagnosis will come through soon, but none of the diagnoses on the table, if confirmed, would substantially change the course of treatment: infant botulism we would just wait out, and the neurological problems, although some of them are treatable with immunoglobin, also call for identical supportive measures.

So, she is medically stable, protected against any of the problems that might come up, under good supervision, and in an ICU where any problems can be rapidly dealt with. At this point, we just need to keep this up & wait it out; she should get better so long as we do that, and so we will.

We're planning the logistics of what look to be a long stay, but we're all doing well. Thanks to everyone for your calls, emails & prayers.

-- Todd (posting for Mary Ellen)

Caroline is having the MRS

From what I have been told, the MRS is similar to the MRI but it uses a different level of imaging that produces different pictures. I'm no medical expert, but it sounds like they are doing everything possible to figure out what is wrong. Other blood tests have come back unremarkable. The doctors are starting to rule out things like infant botulism and metabolic problems. We are so confused!

Caroline is having the MRS

From what I have been told, the MRS is similar to the MRI but it uses a different level of imaging that produces different pictures. I'm no medical expert, but it sounds like they are doing everything possible to figure out what is wrong. Other blood tests have come back unremarkable. The doctors are starting to rule out things like infant botulism and metabolic problems. We are so confused!

update on Caroline

During rounds this morning, the specialists and ICU doctors treating Caroline talked to us about what might be going on and so forth. We did notice that she is weaker this morning than she has been. This could be a result of either a lack of nutrition or whatever is ailing her. She has been put on an NG tube for nutrition. She is getting breastmilk though the tube.

Her initial MRI results are normal. Initial blood work is also normal. The doctors are thinking, right now, that she might have infant botulism. Botulism is a nerve toxin that causes muscle weakness and lethargy. Doc is here, I will continue later...