Wednesday, May 25, 2005

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.

Monday, May 23, 2005

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.

Saturday, May 21, 2005

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.

Thursday, May 19, 2005

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.

Monday, May 16, 2005

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

Sunday, May 15, 2005

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.

Saturday, May 14, 2005

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)

Friday, May 13, 2005

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...

testing

blogger is having problems...this is a test

no news yet

We are going for a MRI with spectroscopy this morning. Still no news, though.

Thursday, May 12, 2005

more news

We will be going for an MRI tonight. So far as we know, the initial blood work looks good. I will be taking a nap for a while, so unless there is big news, I will not be posting probably until tomorrow. Our little one is sleeping right now--and we are praying for her.

update

Caroline had a visit from the neurologist. Nothing much to report. She seems to be a little better, but we will be having some more tests done. We should know something soon. The neurologist seemed to think that it was a virus, because she had been very healthy in the past. She will be going for an MRI shortly. Oh, I just heard from mom and Todd that Caroline smiled. Keep saying your prayers!

Caroline is in the hospital

Yesterday, mom and Caroline went to the pediatrician because she appeared to be ill. She stopped nursing and was weak physically. We had her further evaluated at the local hospital, St. Vincents. Once there, the staff performed a blood test, started an IV, did a urinalysis, and a lumbar puncture (also known as a spinal tap). She was then transferred to the pediatric ICU at Columbia, which has a dedicated children's hospital. My mom arrived late last night. Here is what we know:
*her blood work showed nothing significant
*her white blood cell count was normal, suggesting that this is not bacterial
*her chest xray came back normal
*the initial tests on the spinal fluid were also insignificant
*urine looked fine
*she was a bit dehydrated

She will be having a MRI, CT scan, and other tests today. The doctors I have talked to hope that this is just a virus and she will be home by the weekend. Please keep Caroline and her family in your prayers!
Love,
Mary Ellen

Thursday, May 05, 2005

We went to Manhattan today and stopped at Staples to buy a few things. It was an uneventful day, but people seem to think they can touch Caroline. The next person who tries to put their hands on Caroline without my permission (other than family and friends) will be on the receiving end of a very angry mother. At least three different people tried to grab her hands, one person tried to grab her feet. Arrgghhh! Who are these people! I tell people 'no' and sometimes they don't believe me. I would never dream of touching another person's baby without being invited to do so.

Sorry for the rant, everyone!

Monday, May 02, 2005

On living in New York City with a baby

NYC is a great place to live. The parks, museums, cultural events, shopping, and did I mention the protests...the protests are lots of fun. With a baby, however, these benefits become burdens. To get anywhere in the city, one must take a subway, bus, taxi, or walk. Taking a bus, or taxi, I need to first take Caroline out of her stroller. Then, I must remove any diaper/shopping bags from the stroller, without letting the stroller tip over backwards. Next I must, while holding the baby and the shopping bags, fold the stroller which, I must then carry in my third arm. I don't take buses or taxis.

To take the subway, I must carry the stroller down the steps (sometimes there are several flights of them) before boarding the train. At the big stations, there are elevators. If you can imagine what an elevator at the 34th and B'way station smells like, you'll understand why I avoid it. I'll admit, most of the time someone offers to help getting up and down the steps. I really appreciate this. Next time I get the chance to repay the favor to someother frazzled mother, I will.

The big problem with living in the city with small children is that it takes an hour to get anywhere. Usually more. If I can get Caroline into Manhattan, I want to cram in as many errands as I can so I don't have to go back for a long, long time. This obviously doesn't work as well as I would hope. Usually, by the time I get there (I live in Staten Island) she's cranky and ready to nurse. So I have to stop and tend to Caroline. When I have finally finished shopping, Caroline is usually so out of sorts that it takes another 45 minutes to get back to the SI ferry to get home. The whole adventure is EXHAUSTING.

Living in Staten Island is a benefit that makes city life tolerable with a child. I can take our car (we have a driveway and garage) anywhere I want in Staten Island. I can drive to the grocery store and buy food. I can drive to the doctor's office for Caroline's well-baby checkups. We drive to church on Sunday.

Most Manhattanites look at us with pity when we say we're from Staten Island. "Why did you move?" They say. We moved because we wanted lower rent and more space. "We know of a building in the mid-thirties that has two bedroom apts for $2,700 a month" Sigh. Do people realize how ridiculous they sound sometimes? $2,700 a month in a mortgage will get you your own palace in the south. We have lived in Manhattan before. It was no party. I just remember lots of work to make sure we could pay the rent and not much money left over. At our new place (2 bedroom) in Staten Island, we save over $1000 a month compared to our previous rent. That is over $12,000 a year.

In a way, I'm happy that SI is shunned by the Manhattanites. It keeps the rents low. There's another benefit of Staten Island--the Staten Island Ferry. The ferry is one of my favorite tourist attractions in NY. Tourists take it because it's free and you get great views of the Verrazano-Narrows bridge (longest suspension bridge in US) and the Statue of Liberty. Lady Liberty is a wonderful thing to see every day. I am reminded each day of the sacrifices others have made so that I might live in freedom.

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