Tuesday, December 30, 2008

246th Day in the NICU

Drayke turned eight months old on Sunday. His night nurse left the cutest note on his dry erase board. She likes calling him Draykie-poo!

Dr P has been on for the 2 days and is itching to get Drayke's trach surgery scheduled. He is having some bad issues with his gag reflex and has been spitting up a lot over the last few days. Not formula, just LOTS of phlem.

Sunday, Dr P contacted Dr M, Drayke's cardiologist, and was told that the latest echo shows a dramatic improvement. His most recent x-ray looks great except for a tad of atalectisis/ small collapse in his upper right lobe. Other than that the lungs look great.

Drayke has recently, within the last few weeks, discovered his fingers. He is now pretty much ignoring his tube and playing with his fingers and feeling his stuffed animals. It is so cute watching him play with them and discovering all the new sensations. Mind you, he is still in love with his mobile. In the vid he is watching it and is all excited . My happy wiggly lil man.


Wednesday, December 24, 2008

240th Day in the NICU

Today little man had a few desaturation episodes and his heart rate dropped but they think it is because of crud in his tube. Mom got to hold him today and she had a great time. They are going to do a blood workup just in case. You never know and better safe than sorry. Mom will be giving our 3rd shift Primary nurse (Kat) her gift tonight. I hope she enjoys it. Im hoping Christmas day that our day shift Primary (Pam) will be there to get her gift. Little man has pooped so many times today it is not even funny.
He also got a $50 gift card to Target from Faith Hill and Tim McGraw. Lucky little man. They did not see the little ones but still. Kat also gave him a present last night. Socks that says baby first Christmas and some other items. One of Draykes kinda related grandmas gave him 2 gifts. Unfortunately one was opened because there was no name on it but it is a 9 month old outfit that I hope will fit because it is cute.

All his sisters will get to see him tomorrow so that will be a great Christmas gift to them as well. I have the professional photo now scanned and it is below.

Tuesday, December 23, 2008

239th Day in the NICU

This has been a VERY busy week for Drayke. Dr M was determined little man was going to be off his IV's and sure as anything the morphine was discontinued on Friday, 12/19 and the Ativan IV was stopped today and will now receive scheduled doses every eight hours.

On Friday he also got a new ET tube. The new tube is the same size but has a balloon that can be inflated if needed. Just that little bit of additional diameter has plugged up the air leak he had. His pressures are looking so much better now. The ENT is supposed to be coming by again this week to re-evaluate getting the trach.

He had his first physical therapy session at this hospital and was a good boy.

Drayke weighs 13 pounds 7 ounces. He has gone from a linebacker to a fullback!

Sunday, 12/21, Santa & Mrs Clause visited the NICU and a wonderful picture was taken by a professional photographer. Once we have a chance we are going to scan it.

Today was a big day at the hopspital. George Jones, the country singer, came visiting with literally a boat full of gifts. Also, Billy Ray Cyrus and his daughter Miley performed in the hospital theatre and signed autographs for patients & parents. It turns out he does a lot of work for the hospital.

So far, December has been great!



Friday, December 19, 2008

235th Day in The NICU

This was in today's Marshall County Tribune. His picture was in the printed version. This is the link to the article: http://www.marshalltribune.com/story/1487061.html

Marshall infant mortality rate highest in stateFriday, December 19, 2008By Karen Hall, Staff Writer

Marshall County's infant-mortality rate is more than three times the national average. It's been almost eight months since Drayke Alan Crom was born. And he appears to be winning his fight against becoming just another infant mortality statistic.

That's the good news.

The bad news is that Marshall County has the highest rate of infant mortality in Tennessee, according to the most recent 2006 figures.
Tennessee's infant mortality rate is among the highest in the nation, as reported this week by the daily paper in Nashville. That publication reported Marshall County residents registered the birth of 402 babies in the calendar year 2006, and nine of them didn't live to celebrate their first birthday.

That works out to 22.4 deaths per 1,000 births. It's a rate more than three times the national average (6.3) and worse than Nicaragua or Tunisia, according to the 2006 revision of the United Nations World Population Prospects report.

More statistics are coming early next year. Infant mortality statistics are figured by the number of babies who don't live to see their first birthday.

About Drayke

Drayke was born 12 weeks premature on April 28, weighing 1 pound, 4.7 ounces and measuring 13 inches long. Since birth, he's been in a neonatal intensive care unit - first at Centennial Medical Center and now at Vanderbilt University Medical Center.

"He's the oldest baby in the NICU right now," says his mother, Lorrie King, 45.

However, she's heard of babies who stayed there for a year or more.

King has spent a lot of time staying at the Ronald McDonald House, which, among other services, provides a home away from home for families of critically ill children at Nashville hospitals.

Most of the people at the house are there because of premature babies, King says.

She doesn't see a pattern in anything that might explain why babies are born premature. The cause of infant deaths suffered among Marshall County couples seems just as murky.

"They're not kids, not low income - just normal middle-class people who have tried to do everything right," King says of her fellow residents at Ronald McDonald House.

"There's not a person there who wouldn't do everything possible for their child," she adds.

King has seen many deaths in the course of Drayke's stay in an NICU. When a baby is known to be losing the fight for life, she says, the staff puts a white sticker on the door of the infant's room. A blue teardrop is printed on the white sticker.

"Your heart just sinks because you know what's happening," she says.

A local mystery

There are no easy answers to the high local infant mortality rate.
Cause of death remains confidential, so it's practically impossible to determine which of the common causes cited by health experts - obesity, poverty, diabetes, sexually transmitted diseases, teenage pregnancies, violence, stress and smoking - apply to Marshall County's babies.

"It doesn't surprise me at all," said Steve Calahan, assistant director of the Marshall County Emergency Medical Service, when he was told about the statistics.

He's acknowledged factors such as a poor education and low incomes lead to poor results for mothers and their babies.

"Every child is our future and women are the gatekeepers of children's health," said Anna Childress who chairs the Marshall County Health Council.

She's also a certified La Leche League leader, able to help new mothers breastfeed their babies. La Leche is a nonprofit, nonsectarian organization to provide education, information, mother-to-mother support, and encouragement to women who want to breastfeed.

"If babies got to the breast in the first hour, it would save one million babies worldwide," Childress says, quoting a maxim she knows by heart. "Good healthcare starts with breastfeeding."

The good fight

Drayke's parents, Lorrie King and Robert Crom, have no idea when their son may come home, although she says, "It's looking pretty good."
The baby's doctor wants to have Drayke weaned from intravenous sedation by Christmas. Then he has to learn to breathe on his own, without the ventilator, and to swallow, so that he can be given a bottle.

"He hasn't given up," King says. "This little boy has a purpose in life. We just don't know what it is yet."

Drayke's mother maintains an Internet blog on her son's progress. Visit draykecrom.blogspot.com.

Sunday, December 14, 2008

230th Day in the NICU

We have reached a goal this week. Drayke is now below 60% on his oxygen. We are finally below the range where O2 causes damage. His PEEP was dropped this week from 12 to 11. and his morphine is down to .03. He has been saturating consistantly in the high 90s-100. Still sleeping thru the night and not needing PRNs. This has been a great week.

The biggest news is from today. Drayke is now 13 pounds! Where has my little peanut gone?

This week Drayke discovered bringing both of his hands to his mouth and really working on trying to suck his thumb. He succeeded a few times. The darn vent tube just keeps getting in the way. He also likes to rub the side of his head with his hands. This means he is learning how to self comfort. YAY!!!!



Saturday, December 6, 2008

222nd Day in the NICU

Dr M is so pleased with Drayke this week. He has continued to wean him on his Milrinone and his O2 is now at 66%, nitric is at 10. Little man does have an infection but he is not acting sick at all. Doc changed him over to Ampicillin and we are thinking we have caught it in time to prevent the bug from getting bad.

Because of this infection and the blood draws that are being done with the broviac there is a strong probability that the line may be infected. Dr M does not want to have to pull the line because he is still needing a higher volume line for his meds. He has done some research and has found that an infusion of 70% alcohol going thru the line at a slow rate will kill bacteria in the line. We are talking only 1cc. He is doing more research on this. I told him that I am just wanting to make sure there are no nasty side effects since the end of the line termintes just outside of his heart. Last thing we need to do is give Drayke a heart attack or something.

Yesterday we wore Drayke out by giving him a nice soapy bath which he loved. While I was washing his back I really noticed how we have to start working on his head shape. Having a bit of toaster head (kinda square) is normal in the NICU. The problem is the back of his head is a bit wedge shaped. He is not laying on the back of his head enough, mostly he sleeps with it to one side or another. So working with the nurses we are going to try to get this as corrected as possible. I dressed him for the first time since Halloween and held him for an hour. Tried something a bit different though. Rather than having him laying in my arms I had him in a seated position facing away from me with his head on my chest. He promptly fell asleep but the nurse was pleased with this change in position. He does need to be sitting up more.

When we put him back to bed he needing to get a new peripheral blood draw which made Drayke very grumpy but he never once desatted. Later that evening I was talking to his 2nd shift nurse and mentioned how I am wanting to try to get him in his bouncy seat. She said ok, lets do it now. The last time we tried it didnt go so well because he was starting to get sick from that last staph infection. This time it was an absolute success. He was in the seat for a little more than 2 hours and was just a happy lil camper. I am going to try to make this a once a day thing.

Oh, one thing I almost forgot. Drayke has not needed a PRN (sedation other than his scheduled meds) for more than 48 hours! This is huge. When he does get upset he is no longer dropping his saturations. He is staying in the 90s.

This has been a good week. I have decorated his hospital room a bit with some gel window clings, small yule tree and garland on his crib. His Christmas outfit is all washed and ready for when Santa comes to the hospital later this month.

Tuesday, December 2, 2008

218th Day in the NICU

Dad & I met Drayke's new attending physician yesterday. He is guardedly optimistic. He likes our attitude about Drayke's care and how we are well aware of potential outcomes for our son. We both liked him.

Dr M is changing the vent settings to be more PICU settings rather than NICU. Drayke is old enough to be a pediatric patient and a lot of the time he is still being treated as a micro preemie even though he is 11 pounds 4.3 ounces. Time for a change in the mindset. Fewer breaths with a higher, deeper volume. He is responding very well to the new settings.

Last night I decided to pop over to the hospital after going to Centennial for a bit. Our friend from there was rooming in & getting discharged in the morning. Congrats Dax!!!

Anyway, I get to Drayke's room to see his heart rate at 200+ (he is normally in the 100-135 range)but his O2 saturations were still in the 90's. WTF? I asked the nurse what's going on & she mentioned how he has not been comfortable since she got there at 7PM. I touched his head and he was hot. Extremely hot. I took his temperature three times because I did not believe what I was seeing. 104.6 degrees! I flipped out & told the nurse she needs to call the doctor now to figure out what is going on with my son. I called dad, who was asleep at the RMH, to get over to the hospital now. While the nurses were getting draws for assorted cultures, I had a cool wet washcloth on his head. Within an hour he was back down to normal, and this is without any Tylenol in him.

So, in the space of three hours he went from normal to a major temp spike then back to normal again. The nurse suggested it could be a symptom of withdrawl from the morphine. Dad told Drayke that he needs to stop scaring mama like this and little man smiled at his father!

This morning we are showing growth in both the peripheral & broviac blood draws. Looks to possibly be another staph or strep infection. His PICC line has been pulled because it has been repaired twice so it could a source of infection. Drayke is now on another 7 day course of antibiotics.

The good thing is he is not acting or statting like he is sick. His numbers are looking great. Dr M has upped his morphine .02 to see if withdrawl was the cause of last nights episode. He is making no other med or vent changes until Wednesday. His RT Sherry wants to knock his nitric to 10 and his O2 to 70 but the doc said no, lets give him a day of being left alone.

On an extermely sad note, a little girl died today in our pod. She was born on Friday, full term. They tried the ECMO to help cleanse the ammonia out of her blood but it ended up causing a grade 4 bleed in her brain. I have been on the edge of weepy all day because even though they arent your children you are always afraid this could be you next. We finally spoke to her mother last night and hugged her as she cried.