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.

Sunday, November 30, 2008

216th Day in the NICU

Dr R is really pushing Drayke this weekend. He decided to go ahead & start dropping the nitric. Over the last 24 hours it has gone from 20 to 14. As a general rule doctors like to knock it down a point every day or so. Draykes oxygen is down to 76 and morphine is now at .06! He is saturating in the 90s pretty consistantly today so most likely they will drop his O2 down another 2% to 74% later tonight.

Drayke's feeds have been raised to 13cc's/hour and his lipids are being stopped. That means if he PICC line goes it is not a problem, we just use the broviac for all his meds. He is also getting weighed tonight so we are going to see how much he has dropped since taking the Miralax. Oh, that is also getting cut back to every other day now since his belly is nice & soft & everything is moving the way it needs to.

Dad & I saw the baby's cardiologist yesterday and we discussed what has been weaned so far and he is pleased. He s not overly concerned about the echo scheduled for tomorrow. The numbers Drayke is showing are speaking volumes in that he is tolerating the weaning very well.

Friday, November 28, 2008

214th Day in the NICU

Today Drayke is 7 months old.

It has been a good week and a half since starting his weaning on the vent. Today Dr R knocked him down to 80% & his morphine is at .1, half of what he was on at the time of the big meeting. Dr R is wanting him weaned to 70% by Sunday so we can start weaning the nitric.

His nurse today was being very negative on the phone this morning. So much so that when I hung up I had a bit of a meltdown. I called dad and he figures the nurse was just having a bad day. Dont try to tell me weaning 20% off his O2 and 50% off his morphine in 9 days is not an improvement! Grr.

We get a new attending Monday and a care conference is being called for after Drayke gets his new echo done on Monday. We need to bring the new doc up to speed and make sure we dont backslide.

Monday, November 24, 2008

210th Day in the NICU

Drayke has been weaned down to 90% on his oxygen and still saturating in the high 90s-100. They have only weaned him .01 on his morphine and everything else is the same.

He was weighed Sunday morning. Since he had not pooped in more than a week I know this will be dropping. He weighed 11 pounds 10 ounces. The doctor prescribed Miralax to be mixed his formula last Tuesday. Nothing happend until Sunday. I put out a message to all the moms I have in my pnone book. One of them called me and she has been told by a gastrointerologist to never mix Miralax with milk, it will only clog things up worse. We had the weekend attending paged and told him this info. He then ordered that the Miralax be mixed with Pedialyte. Within 3 hours he had overflowed his diaper. Dad & I were ecstatic over this huge mess.

Dad got to hold him for about an hour. Little man did so good. He loves being held. Then Drayke decided to spit up his methodone. He has done this a few times now & may may need to switch him to IV.

This mornings xray his lungs looked a bit wet so he go some Lasix to help dry things out. He ended up having a diaper that weighed 238 grams, urine only!!!

A friend from Centennial posted this on her MySpace. She was right about needing to pull out the tissues:


What Makes A Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.

A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?

Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay

I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say

"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.

They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Though some on earth may not realize you are a Mother,
Until their time is done.
They'll be up here with Me one day
And you know you're the best one!

Wednesday, November 19, 2008

205th Day in the NICU

The meeting yesterday went better than I had anticipated. It lasted and hour and a half. Dr M from Cardiology, Dr C & Dr R, 2 nurses and someone else whom I have no clue as to who she was were in attendence.

The main points of discussion is where to go from here, our goals for the next month and if Drayke codes what are the limits we are setting as far as bringing him back.

Dr R's main concern is if the pulmoary hypertension is "fixed" which means there is no reversing what has happened. Dr M & Dr C both feel that we are still in a position where Drayke can still beat this. Dr P last Friday also expressed this as well. We have to get him growing. I told them flat out "we have to get his bowels moving so we can get back up to full feeds. Period." I also stressed that since 11/1 there have been no changes to any of his settings on the vent & nitric. How can we see what he tolerates if we leave everything as is? The same goes for the sedation he is on.

The conclusion was we were going to very slowly start weaning his O2 & morphine. His feeds have also been upped to 4ml/hour with muscelax (sp?) to help get his upper GI moving. Today & yesterday he has been doing great, just like when Dr P & Dr C had him. We are back on the right track again. We mentioned how people have brought up ethics questions about how they feel we are doing so much to our little man. We were told that what is being done is definately not over the top as far as his care. There are more drastic things that could be done. We did not even ask as to what those were because we feel that Drayke will make it thru with what is being done at this time.

The other part of the meeting was what happens if Drayke codes? We all agreed on what dad & I felt were acceptable conditions. No epiniphrin, no shocking him, CPR until we get there. We told them how we were afraid to sign a DNR because he may just have a clogged ET tube if something happens and didnt want him die because of something easily taken care of. The doctors were all in agreement that everything would be done except those items listed above. So it is noted in his chart.

On a very down note: one of the moms we have made friends with at the RMH has had to make a hard decision. She gave birth to twins a couple of months ago. The boy has multiple PVL's (holes in his brain) and has been having seizures. Yesterday morning he had a series of them and is now considered to be brain dead. When I found out about this last night I went to my room & burst out crying. I prayed for the gentle release of his soul at the same time as being thankful for the continued life of my son.

Being in the NICU as long as we have, I have seen so many babies die. Parents being fearful of leaving their childs bedside. The phone ringing and seeing the 615 area code and all you can think is please god let the baby be ok. It does not get easier. Feeling extreme sadness for both parent and child and greatful to have dodged the dark spector again. Death is always so close. As I have said before, I would not wish this experience on to my worst enemy. I am praying for the day when I can again cry tears of joy.

Monday, November 17, 2008

203rd Day in the NICU

The big meeting/conference is set for tomorrow at 11:30AM. I am nervous. Lots of doctors, nurses, respiratory therapists, social worker, dad & myself all discussing Drayke's prognosis & future care.

Discussed during rounds this morning about the absolute need for Drayke to get a trach. I feel down to the core of my being that he will surprise everyone and do far better with it rather than the ET tube in his mouth. The times he de-sats the worst? When his tube is getting re-taped. Other than that he does great. The RT made the argument to the doctor "you need to stop looking at numbers and think of the baby. He is 7 months old and cant develop the way he needs to with him intubated". All of his labs from this morning came back great. He is healthy except for the lungs.

Today we are starting him back on scheduled Methadone to begin the weaning process off of the morphine. We aregoing to do this very slowly. The morphine is clogging up the plumbing and he hasnt pooped in almost a week.

The nurse last night weighed him and Drayke is now a whopping 10 pounds 11 ounces! This is not water weight either. Now once he does start having bowel movements again I am sure that will drop a bit but dad are enjoying the fact he has gotten so big.

One small concern I have are his eyes. One seems to be a little off kilter, most likely due to him almost always being on a side and the muscles not quite developing correctly. They move together, but look a bit off. At least I am sure he can see and hear.

We finally have been able to use the new sheet I made Drayke. Dad found some dragon flannel at Joann Fabrics. It is so cute and I made sure that I left it long enough to turn into a fitted sheet once he gets home.

Friday, November 14, 2008

200th Day in the NICU

Happy 200th day of living outside the womb! Today has been great.

Drayke did incredibly well during the broviac placement. He really surprised the Fellow, Maria. She is the one who told us last Saturday that he had no chance of survival, etc.

Afterwards the surgeon came into the quiet room to let us know that they tried to go thru his neck/chest but his anotomy wouldnt allow for it so it was placed in his right thigh. The surgeon also told us how well everything went and that he has an availability on his schedule to get Drayke's trach & GI tube put in. WOW! We know he did good but not THAT good! YAY for my strong baby bug!

About 30 minutes after that our fave, Dr P, showed up and played with his vent. We told him what the fellow & nurse had said last week and all he said was "and Fellow's have a LOT more to learn". He is still confident that we keep going as we have been Drayke will make it. ALL of his problems stem from the Brochial Pulmonary Displasia, BPD. Once we get that back under control, and it looks like we are on the right track, that the heart WILL take care of itself. He is totally against any kind of surgical repair to his heart. Dr P thinks he simply had a setback from having back to back staph infections. It was the first breathe of fresh air we have had all week. With Dr P this confident, our hopes are high. Gods I love that doctor.

Dr R came in after that (baby's current attending) and spooked us a tad by telling us he had ordered a blood test. He had finally done an actual physical exam of Drayke & noticed that 4 toes are partially fused (2 on each foot). The technical term is syndactyly. R & I then told him we both have webbed toes and showed the Fellow. The both laughed and said yep, it's genetic. I asked him to still go ahead with the test so we know what it says.

The two pics are from today after the surgery.

Thursday, November 13, 2008

199th Day in the NICU

Drayke has been fairly stable this week. Tomorrow he is getting a Broviac line put in because he can blow thru an IV in no time. A couple of days ago a nurse practitioner attempted to get a second PICC in but she couldnt get it the thread to where it needed to go.

The reason we have agreed to the Broviac is the lipids they are wanting to give him are not compatable with the Ativan going thru the same line. Also, we can do blood draws on him without having to stick him (the PICC on babies is much too fine a catheter, it could clot off easily).

The conference with all of his doctors, some nurses and ourselves has been rescheduled to early next week. It doesnt do any good to have a meeting of the minds without his cardiologist.

Dad & I have been doing a lot of research into a potential surgical procedure to help with the pulmonary hypertension. Install a shunt to equalize pressures in the heart. Our friend from Centennial was sent here due to a hole in his heart. It was decided that it was this hole that was preventing him from getting PH so it was decided to leave it as is. This proceedure used in combination with a surgery for the septal hypertrophy could potentially take care of his issues. It is a long shot and we are going for broke on this.

Saturday, November 8, 2008

194th Day in the NICU

I held Drayke today for a good two hours. I also got to see him saturate at 100% for the first time in more than a week *YAY!*

Baby boy hit 10 pounds 7 ounces!

We are needing to talk to his cardiologist as soon as possible in regards to his cardiac hypertrophy (thickening of the heart muscles). I am needing to hear from one of the top specialists in the field to make sure what can be done to help this. One of the Neonatology Fellows came in and told us nothing can be done now that the biggest issue is Drayke's heart. I am printing out some research and will bring to the hospital on Tuesday (Dr M is out until then). I need to know if Dr M has given up or does he have a plan in mind.

If Dr M says we are done then dad & I have a huge decission to make in this next week. Our fave nurse is already planning on being with us if we decide to do the unthinkable. The thought is killing me by inches. I have not been able to stop crying since 3 this afternoon.

Friday, November 7, 2008

193rd Day in the NICU - Part 2

Leave it to my son to break thru his meds and decide to wake up on his own! He is on a IV drip of Vecuronium. He is not supposed to be able to wake up!

That speaks volumes to me. He is so strong. He will beat this.

*mama dances around his room*

193rd Day in the NICU

This morning I walked into Drayke's room and saw his saturation at 77. My heart sank. What went wrong? Why is his PEEP back up to 12?

It turns out he has a simple pneumothorax, slight collapse of the upper right lung. When I went over the xray with the RT manager we also noticed his ET tube was not below the clavical. So an RT came in an his tube is now at 11cm and his sats have popped right back up to the 90s. The xray from 3pm shows he is now a tad over expanded so the PEEP has been dropped back down to 11, possibly lower it more later tonight or tomorrow.

The echo from yesterday shows an improvement in his pressures showing that we are on the right track.

The doctors are going to start the weaning process off the Vec. This will be an all day thing because, as with any drug, we want to make sure there is no rapid withdrawl.

Thursday, November 6, 2008

192nd Day in the NICU - part 2

Pictures! These were taken between 10/27-11/5.

192nd Day in the NICU

We are into day two of having Drayke in a paralytic state. His numbers are very stable. The spells have stopped. Heart rate is anywhere from 135 to 160. O2 saturations are between 88-95. His blood pressure has always been good. Now we need to figure out why he desats while awake. Stress. Agitation. We simply are not sure. I am not as afraid as I was 2 days ago when I couldn't stop crying.

The pressure on his vent was dropped to a PEEP of 11, pressure support is at 12. In english, he is needing less support. We do need to try to get his oxygen back down but the doctors are taking things very slowly at this point.

I have the list of meds he is currently on, both IV and oral:

IV Meds
Vecuronium - paralytic (endng on Saturday)
Milrinone - heart function (increasing dosage today)
Morphine - sedation
Lorazepam/Ativan - sedation
Vancomycin - antibiotic (today is his final day on it. Last 2 blood cultures show negative for staph)
Total Parenteral Nutrition (TPN) - until we start his feeds

Oral Meds
Viagra/sildenafil citrate - a blood vessel widening vasodilator
Spironolactone - diuretic
Hydrochlorothorazide - diuretic
Aminophylline - bronchodilator
Theophylline - bronchodilator

My sweet little man is SO going to hate doctors as he gets older.

Tuesday, November 4, 2008

190th Day in the NICU part 3

Little man is not doing very well. The last four days he has not been holding his oxygen saturation well at all. He has been dropping all the way to the teens sometimes and taking a while to come back up.

The echo done today is showing his heart is worse. It appears he is going into cardiac failure. We finally get his lungs doing good and his heart is starting to give out.

The doctors are putting him in a paralytic state/induced como to get his body to relax and let some of the meds do their work. He is back on the Milrinone, LOTS of morphine and Ativan. His feeds were suspended again for the next couple of days.

Everyone is at a loss as to what has suddenly gone so wrong. Dr P is very unhappy at this turn of events. Dr M from Cardiolgy & Dr C are all just stumped.

190th Day in the NICU Part 2

Drayke's Heartrate went down around 1:15 and he had to be bagged for close to 5 min. Cardiology came by and ordered a echo and there is also a order for a chest x-ray. It is still a waiting game.

190th Day in the NICU

I called on him this morning. He had a rough night. Dropping his saturation down to the teens on occasion. I took the day off because we are supposed to be meeting with doctors all day today. Mom decided not to go to WIC or vote because of little man's condition.

We got to the hospital. They upped his nitic by 5 to a total of 10. His vent is still at 100% and he constantly desats. We ran into Dr Carter in the hall when we went down to grab a quick bite to eat. He does not think it is the lungs that are causing this. He thinks it is the heart. The echo they took on friday does not look better nor worse than the last time so he is stumped as well and they are going to get the team together to talk. He is going to ask Dr Prince what he thinks. We came back upstairs to find out they already rounded on him. Nothing much was changed. They are waiting for cardiology to come up here and decide whether the milronone would help him more than the digoxin. They orginially said they did not think it made a difference but they will come down and check him out.

The pain management team came in and looked him over and even agreed that this is more of a discomfort pain than a hurting pain so they have decided to make some changes. Please excuse the spelling:

Morphine drip was uppded to .08 from .02
Morphine as a PRN .7
Adavan drip .8 is being added.
Adacan as a PRN .7
Phenobarb as a PRN 2 1/2 mg
Methadone was pulled.

He is still getting the other drugs as well but nothing on them has changed. They also decided to stop feedings right now because the food is coming back up his OG tube and that it can cause more problems with forcing him to eat than from putting him TPN and lipids. He got a dose of Lasixs because he is looking like he is retaining water. He urine output has not been good but we were able to get a 94 gram urine diaper out of him right after the dose.

Repitory has to keep changing his vent over to PCV (Pressure control). It is where the machine is forcing him to do certiain pressures. It is harder on him than the other settings but he needs to keep his oxygen levels up.

We were told that he maybe on the verge of a point of no return with his heart (told by the nurse). His lungs are doing good but his heart is failing. It is common with kids in his condition. They are looking into what meds would help him. We are still waiting for the team to get together and talk to us about a Plan of Action for him.

Monday, November 3, 2008

189th Day in the NICU

So Today was like yesterday. Drayke is not doing so well. They put the PICC line back in him. His saturation levels are still low. Down in the 60's consistantly. He is having several spells. These spells are happening while he is awake and while he is asleep, whether he is being messed with or not. The have decided not to do the bronch scope or the trach this week because of his spells.

Sunday, November 2, 2008

188th Day in the NICU

We walked in today to see Drayke's O2 levels in the 50's and 60's and just staying there. They tried to give him a transfusion earlier but they had to warm up the blood and then they tried to flush the IV line was not flushing so they had to send the blood back because by the time they were flushing the blood was expired. The nurse had to give him several manual breaths trough the Vent and he eventually started to do better. They started the blood infusion at 10:30 am. The Dr's rounded right after that. We looked at his X-ray and it does not look that bad. They are waiting for the culture to come back on the PICC line so that they can re-order a PICC so that they can start him back on the morphine drip. They are giving him PRN's of morphine. More than likely tomorrow when the PICC line lady is in they will give him the drip back and slowly wean him this time. Right now his 02 sats are in the high 80's to the mid to high 90's. Just hit a 100 a few moments ago.

It is scarey to know so much about his care and everything. I am not saying I know eveything but I am starting to think about going back to the medical field instead of continuing the Business Information field. Mom is seriously considering going for the nursing field. Will be posting more on his condition later today as things progress.

Saturday, November 1, 2008

187th Day in the NICU

Today has been very upsetting. His saturation has been in the 80's and he keeps desating. Mom got to hold tonight and he was stating great but then they put him in his bouncy seat he was just unhappy. Late in the night his blood draw came back. His platelets (was around 300) are high but his hemacrit was low. He needs more blood and that should help with his oxygen levels. His PICC line culture came back negative so it was not the PICC line that caused the reoccurrance of the Staph infection. Another thing is he does not seem to be responding to the methadone as much as the morphine so we will talk to the Dr's Tomorrow and see what happens.

Friday, October 31, 2008

186th Day in the NICU

(MOM)

Today has been a good day. Drayke got his first "real" bath in over a month. He still loves them and was soo happy & content. He was just looking all over the place. Afterwards got him dressed inhis onesie, socks, hat & blanket to be the great pumpkin. The pic was taken with my phone so it is not the greatest quality but I will upload the pics from my camera on Tuesday.

One of the really kewl things about being here at Vandy are the visits from celebrities and sports figures. Today 4 members of the Predators are here, handing out Halloween stuff & autographs. Two of them are even in costume, as Pooh & Tigger. As above, I will post pics this coming week.

Dr C came in a few minutes ago to let me know we are keeping things te same as right now & he noticed I have Josh Groban Closer playing on Drayke's cd player. We talked about trying to get him to come to Vandy since I have seen him on TV doing a lot of charity work. He has never played Nashville and how can you be a musician if you have never played Music City? hehehe

Wednesday, October 29, 2008

184th Day in the NICU

Last night Drayke had a rough time. He kept de-satting and his oxygen had to be kicked up to 100% a few times. Needless to say this morning I had a lot of questions for the doctors when they made rounds.

We didnt care for his day nurse yesterday. I dont care if you have 30 years experience, you should not freak out because the baby has a bit of a meltdown because he needs to be suctioned. I do understand that you have another baby to take care of as well but when his tube gets clogged his numbers drop pretty quickly.

He was overbreathing the vent so much at time he was hyperventilating, up to 100+ on his breaths per minute. The night nurse became so concerned over his reflux she suspended feedings. What happens is if Drayke doesnt poop in 24 hours his formula comes back up the the tube in his tummy. If you put in a supository, he poops, reflux goes away.

Dr C if pretty confident what is causing these meltdowns on top of the tube getting clogged is Drayke is no longer getting any additional morphine and is being weaned. He is upping his dosage of methadone to help with his withdrawls. The head ultrasound looked good, brain is develpoing nicely. This mornings x ray, bloodwork and urine all looked good, no further sign of infection. We are holding of weaning the vent & nitric for today to make sure the methadone is doing its job.

The cardiologist came in and Drayke is going to be getting a cardiac MRI tomorrow morning to get a far more detailed look at the spot on his heart. It could be thickening of the heart wall or perhaps even a benign mass. We will know within a couple of days. I told him it was a darn shame they couldnt coordinate with the ENT for the scope. That way he would only have to go under general anesthesia once.

Tuesday, October 28, 2008

Monday, October 27, 2008

182nd Day in the NICU

Today Drayke had a new ventilator tube put in. He has been having a lot of oral secretions and it has been causing an issue with his breathing. He has had a 4.0 tube in him since well before we left Centennial. We are talking it was either late July or early August when he had this particular tube installed.

They gave him a big dose of morphine & ativan so he would be calm as well as a paralytic to make sure he did not get to fiesty & beat the hell out of the respiratory therapist. We got back to his room just as they were finishing and they were very VERY pleased with the result. The extuabtion and re-intubation went very smoothly. He now has a larger, 4.5mm tube. He did not de-sat during the entire procedure. His peaks (inhale/exhale) are really good where they had been fairly weak on the exhale. He was very pink & looked so good.

I pulled his old tube out of the garbage and saw why there were so many problems. The inside of the tube had accumulated hardend gunk with just a pin hole for the air to be going thru (literally!This thing is NASTY looking). We are finally going to find out for certain how much pressure he really needs. We are predicting his pressures will be able to lowered signifgantly.

I made it to rounds this morning and a lot is going to be happening over the next two weeks. Dr C is wanting to get his nitric down to zero by the end of the week. Early next week they are going to scope his brochia to see is there is any damaged that has been caused by the tube and if he has bronchial malaysia (a floppy tube). Normally there is a stiffness to the air passages. If floppy then they are going to do the tracheostomy then & there. If they are firm then we may be able to bypass surgery & go to an alternative, less invasive method of O2 delivery called Vapotherm.

An ultrasound of his kidneys was done. He is going to be going on methodone to help wean him off of the morphine.

It is a very exciting time for our little man.

Friday, October 24, 2008

179th Day in the NICU

Lil mans vent pressures were adjusted again today. He is now back down to 8 on his pressure support and the Nitric is down to 6. His morphine has also been weaned back down to .0015, so he is a tad jittery but still able to rest comfortably.

So far, so good on preventing the diaper rash caused by the antibiotic. Fortunately those end on Sunday.

Drayke's cardiologist came by yesterday and was really surprised a new echo had not been ordered since going off the Milrinone so we are getting one sometime today.

Other than that not much else going on. I checked out a book from the family resource center here at the hospital to help me learn to play specific games with Drayke for helping his development.

Wednesday, October 22, 2008

177th Day in the NICU

Found out today the Drayke UTI was caused by E-Coli. Now I am rethinking a circumsision. The blood borne infection is a minor staph infection (not the hard core can kill you type). So they changed out the ampicillin to Venkamyacin(sp?). Gent & Venk are the antibiotics that led to his horrific diaper rash a couple of months ago. I have told his nurse to put in his chart to use diaper rash cream EVERY time his diaper is changed to try to ward off another rash.

Finally met the new attending and like him. He is keeping up with Dr P had started. His Nitric has been weaned down a bit more and his vent settings for his PEEP were dropped back down to 11 from 12. Also still on the Sidenifil, Digoxin, diuretics & assorted sedative (those are being weaned still).

Went to Parents Reach Out this afternoon for a meeting on a parents role in child development. We discussed Maslow's Hierarchy of Needs as well as concerns over physical & mental development.

I know some people have expressed concern over his future quality of life. When we do finally get him home there will be precautions that must be taken: the rest of the houshold staying healthy, teaching everyone to wash their hand & use hand sanitizer, good air filters in the AC to keep alergens & dust to a minimum. He WILL outgrow this. At this point there is no way to predict exactly what things will be like. He will have as normal a life as we can provide for him. That means school, playtime, socializing, etc. He may need to have nebulizer treatments or a rescue inhaler but asthmatics do that too. He will learn what his limits are. It will be a learning process for all of us.

Monday, October 20, 2008

175th Day in the NICU

(Mom)

Went shopping at Walmart, Target & Babies R Us to find some things for da lil man: wrist rattles, baby mirror, Halloween socks to go with his too cute crochetted pumpkin hat & "Baby's first Halloween" onesie & a jingly frog like critter. Pam & I are going to really start working on his development.

I also finally have the RainForest diaper caddy. Ok, fine, yes it is more for me because I think the entire line is adorable. Last night Dad brought Drayke's mobile to the hospital and gee does that boy LOVE it! He was awake for three hours watching it.

Found out this morning why lil man has been out of sorts the last few days. His nurse Pam thought he was looking kinda grey yesterday morning and ordered a blood & urine culture done. Sure as hell he is showing a minor infection AND a urinary tract infection. They started him on his antibiotics this afternoon & should be feeling really good soon. I read a chapter from "The Secret" out loud to Drayke yesterday. Get him started young with positive thinking.

Saturday, October 18, 2008

173rd Day in the NICU

Drayke has had a rough 24 hours compared to the last 2 weeks. At 2am on 10/17 he received his last dose of steroids. During rounds the doctors changed his Ativan from every 6 to 8 hours. Also at 1pm he was taken off of the Milrinone and the Nitric was dropped another 2 points.

Around 4pm he was sleeping deeply, O2 saturating at 100 and had been for a few hours. His heart rate dropped below 100 bpms then kept slowly dropping all the way down to 68. His nurse decided to check his blood pressure and the difference was like night and day. His heart rate jumped up to 195 and his O2 dropped to 45. We needed to crank his incoming O2 up to 100% for about half an hour, until he finally decided to calm down. He decided to do this off and on most of the night. Needless to say I did not sleep well at all.

When I came into the NICU this morning I spoke to his head resident about my fears of him possibly starting to go backwards in his progress. She advised me everything was gone over during rounds, a new xray was taken. Everything looks good. His blood gasses are right on the mark and the xray shows his lungs are slightly over inflated due to the 2 times his nurse bagged him but that will take care of itself. The team firmly believes that he is simply reacting to the lowered dosage of Ativan, one of his 3 sedatives. She was very positive that he is still progressing well and defiantely NOT on a downturn.

I know this makes me feel so much better than yesterday. Life in the NICU is a series of steps forwards and backwards. At this moment he is happily sleeping on his belly and saturating at 100.

Oh, the big news from yesterday is he has finally been moved from a neo bed (the one where the top comes down and has heat and such) to a big boy crib. Poor little man is so lost in this huge thing. I am so used to getting up close to him in the smaller bed and now he seems so far away. Dad is bringing lil mans mobile up on Sunday as well as his bouncy seat. I am really looking forward to finally being able to work on his development.

On Thursday while having lunch in the Ronald McDonald Room I kept hearing my name being called out and I finally was able to see who it was. One of the moms from Centennial had just recently had her son transported to Vandy. She is still stressed over the move, missing the comfort zone of Centennial, just as we were.

Oops...I spoke too soon. Drayke is now wide awake & wiggly. Time to get him on his side so he doesnt extubate himself.

Thursday, October 16, 2008

171st Day in the NICU

(Mom)

Today little mans Milrinone was weaned by half. Nitric is down to 10. Vent pressures are down as well. Tonight they are starting him on Digoxin (sp?)based on the echo he had this evening. This does much the same as the Milrinone but it is an oral agent as opposed to administered thru his PICC line.

Dr P today said during rounds that "It took Drayke 5 months to get as bad as he was, it is going to take 5 months to get him to where he needs to be". Dad asked "Does this mean he will be here for all that time?". The doc replied with "oh no, he will be home before that. He is just going to be on some meds and maybe some additional support but should be able to go home.

"Home! 3 weeks ago being told Drayke was not going to make it to now potentially being able to go home within 2-3 months!

With all the lowered support his oxygen saturation is still in the high 90s to 100 range. We are probably going to be getting a trach & g-tube put in sometime within the next 30 days.

Tonight is also the final dose of his second series of steroids. Thank the gods. He is lil mister grumpy man on steroids. It also has raised his blood pressure a bit but his latest reading at 7:30PM was 89/38(51) which is SO much better than earlier today.

Wednesday, October 15, 2008

170th Day in the NICU

So on Monday he weighed 9lbs 5 oz and he is 21 inches long. Yesterday they took an X-ray and decided to put him back on the 3 day course of steriods. They also made changes to his vent settings because one lung had too much pressure. He has been throwing some big tantrums about once a day. Last night he had one and he did not settle down until we started to give him a bath.

Today he had another big tantrum. Nurse said it took 3 PRN's (prescribed sedatives that are allowed to be used if he needs them) and a while to get him calmed down. They did another X-ray today as well and made even more adjustments on his vent. He is currently down to 12 on his PEEP and 8 on his pressure support. Still at 50% O2 and still at 20 bpms. In addition his Nitric has been weened to 10 today. Also yesterday his morphine was changed out for a less concentrated mixture of morphine plus they took his dose down to .015. He had daily X-rays so that they can modify his pressures. Weekly Echo's as well.

What scares us the most right now is that he is throwing up gastric juices and we worry that he will get it down his vent tube. We cross our fingers he does not. Its been a rough week but he is still progressing. Unfortunately, this is the last week we will have Dr Prince. We will get a new attending but Dr Prince promised he will check in on him and get updates from the new attending.

Friday, October 10, 2008

165th Day in the NICU

Little man is doing so good. Dr P told him "you are heading in the right direction Drayke!" He lowered his supportive pressure from 15 down to 12 and his nitric oxide down another 2 to 14. They weaned his morphine down by another .005 yesterday so he is at .02 on his morphine. The pressures in his heart are pretty much equaling out now, rather than concentrated to one side. Things are looking so much better than two weeks ago. If he keeps this up at this rate he should be able to come home soon. He had a echo yesterday and there was no significant changes from his last one so he is still doing good on that. Next week on Monday he is going to get another X-ray to see if he needs more steriods to help with his lungs. They are thinking about switchimg his heart med to Digoxin form Milrinone. With Digoxin he can take it through his feeding tube while Milrinone has to be put through the PICC line.

Here are some pictures. (Mom finally downloaded them to her computer)

He weighed 9 pounds 14 ounces. Turns out it was a huge amount of water weight. He lost more than a pound in one week. (Still waiting for the weight tonight).



This is from today while grandma was visiting. Big boy yawn!

Also they have started to allow him to wear his clothes again so YAY!... Everyday we keep getting more and more good news and everyday I feel so blessed to have such a miracle happen to us.

One friend of ours from Centennial is getting close to being released. Another friend's little one is getting close as well. They have been in longer in the NICU longer than us. I am not going to put names on the journal but please send any prayers and postive energy to all the little ones and their parents in the NICU's because without the support of the other parents that go through this or from all the other people who have given their support I think we would have gone insane (well more insane).

Monday, October 6, 2008

161st Day in the NICU

Today was about the same as yesterday except for the fact that Dr Prince said to us that Drayke is the one doing all the work and pretty much healing himself and that all he (Dr Prince) is doing is taking notes and changing his meds. He did say that when he talked to Dr Moore that Dr Moore was pleasantly surprised that his echo was as good as it was.

Earlier in the day Dr Prince came by to check on him and his Oxygen Saturation was at 100%. During the rounds he mentioned that tomorrow morning they will get another X-ray to see how his pressures are holding up so that they can decrease his PEEP (Pressures).
One thing we have noticed with him is that he is constantly stuffed up so when they suction him out he has tons of crud in his nose. He has some down his breathing tube but most of it is in his nose.

Tonight his length measured at 20 inches, so who knows exactly how long he is. Also, he weighed in at 9 pounds 4 ounces. Big growing boy!

One thing I failed to mention yesterday is that Dr Prince wants to try to bypass the trach altogether if we can and try to get him down to CPAP or Nasal Cannula. Less surgeries the better. There is a high possibility we will not have to have a lung transplant but that is yet to be seen.

Another thing I forgot to mention was when my little ones came in to say their goodbye's on 9/26 my middle child saw her brother and then came out of the room and said defiantly to the nurse "Drayke is not going to die".

Another thing to note. When I say stat's I am talking about all his numbers together which would qualify as statistics. If I am talking just about his oxygen saturation I will say sat. If you are posting as Annomyous please sign your name so that we know who you are so that we can comment to you directly. It is extremely hard to reply to a comment if we do not know who you are.

Sunday, October 5, 2008

160th Day in the NICU

Last night little man weighed 9lbs even. Apparently sometime in the early morning they did a Blood gas and his was 18. It was too low. Drayke has never had that low of a blood gas. It should be in the 30-40's. So they decreased his BPM from 30 to 20. His Peep is still 14 (His pressure is still high but they are not going to start weaning him on that till Monday). His O2 is still at 50% while he is still stat'ing in the mid to high 90's.

So far he has been off the steriods for 58 hrs and nothing had to be increased. We are still waiting till we are sure before they start to wean his Nitric. Once they start weaning that it will be 3-5 points every 3-5 days. He is currently on 20 ppm on his Nitric. So its a waiting game but at least we have had positives for the last week.

According to Dr Prince: cardiology has changed Draykes status from severe pulmonary hypertension to moderate. What a difference a week makes. Turns out he is back to doing a lot of breathing on his own. More yay! Drayke has been wide awake & happily wiggly. The Doctor also told us we could hold Drayke twice a day as tolerated.

Friday, October 3, 2008

158th Day in the NICU - UPDATE!

This morning's x-ray showed some healthy lung tissue! What Dr Prince is doing is working. I think I love that man.

UPDATE: At 6PM tonight I received a call from Drayke's cardiologist. The echo that was done on his heart this morning shows improvement.

New healthy lung tissue. Heart improving. What a day little man has had. Dad and I are so happy we have both been crying tears of joy today.

Thursday, October 2, 2008

157th Day in the NICU

This morning we walked into Drayke's room, just barely missing rounds., and we see his ventilator settings the lowest we have seen in months. His oxygen was at 50%, breaths per minute at 30 and his saturations were in the high 90s. OMG SQUEE!!!!

Tonight is his last dose of steroids. We know there may be a rebound back to some higher settings but we are so happy right now. His lungs can heal some at the lower settings. Tomorrow/Friday he is getting a new echo & xray to see if there have been any changes.

I gave little man a sponge bath tonight and read him a story. Dad is working remotely from Drayke's hospital room.

We now have a room at the Ronald McDonald House and the place is amazing. There are also several people we know from both Centennial & Vandy staying there so it is like being with family. The ONLY down side is they do not have wireless internet so dad can not work from the there.

I cant say enough how happy I am that we moved to the new hospital. I feel like we are getting a second chance at turning things around for Drayke.

Wednesday, October 1, 2008

156th Day in the NICU

We walked in this morning and his O2 was 67. His BPM was 35 and Peep was 14. Dr Prince has since then dropped it to 63%. They have started his feeds back up. His blood gas was 69 which is still good.


Currently he is on Milrinone, Morphine, Decadron, Versed (PRN), Ativan (Scheduled), Sildenafil (Viagra), Hydrochlorothiazide, Theophylline, and Spironolactone.

We mentioned that we did not want him on the morphine when he was at Centennial but we also did not know the entire reason why. When a Dr refuses to tell you a reason you get kinda upset. Since Dr Karmo told us about it at Centennial we were okay with using it but they never did but Vandy is using it to help him.

Tuesday, September 30, 2008

155th Day in the NICU

So today we walked into the NICU and low and behold we saw little man on 73% Oxygen and also on 45 BPMs with a Peep of 14. 73% O2 is good considering everything else. Dr Prince has been really aggressive with his treatment. He is now giving him a 3 day high dose of steriods. This seems to be working. He still is weighing at 9 lbs 6 ozs. His tummy has been a bit upset but it could be because of multiple things. I cannot say how much I love Dr Prince. He was stat'ing okay. He did manage to throwup some food so they stopped his feedings for an hr and resumed again.

During the late night/early morning he threw up again. They stopped his feedings again. He also finally is starting to bhave bowel movement again. He is a bit aggravated but that is probably because of the steriods.

Dr Prince stated that if we can get his O2 down to 60% that his lungs should start growing new tissue. Of course this is a long process for him to completely heal. So there is a chance our little man will not need a lung transplant. So far it is looking like everything is going in his favor.

Monday, September 29, 2008

154th Day in the NICU

Baby Bug weighs 9 pounds 6 ounces again tonight. Yes, he has dropped a lot of weight, 8 ounces in 5 days, but that is due to all the diuretics he is on. The big news is he is now 21 inches long! YAY!

A good friend of mine sent me a link to Texas Childrens Hospital in Houston. The pulmonologist who started the peds lung transplant team in St Louis is doing the same thing in TX. I called them this morning and left a voice mail. They called back & R talked to someone for a bit. They advised him that we will be getting a call back within 24 hours & to advise the resident on duty to prepare a summary of Drayke's condition. We shall see if we can get him in there. In the meantime this weeks resident is going to be treating Drayke very agressively along with the cardiologists and pulmonologists.

Sunday, September 28, 2008

153rd Day in the NICU

(Mom)

He is 5 months old today and was awake & alert for quite a while despite being on three different sedatives. His eyes are the most amazing color of light blue/grey fringed with those dark lashes. I tell ya, he's gonna be a heartbreaker with the ladies. I cant post any pics until I upload them from my camera the next time I am in Lewisburg.His stats have remained stable for the last 48 hours, so I think he has recovered from the transport. I believe this new med, Milrinone (sp?) is doing some really good things for Drayke. The last few days here I have had a parent sleep room until we can get into the Ronal McDonald House around the block.

Other than that, life is pretty much in a major holding pattern. We are planning for the worst and hoping for the best for Drayke. The doctors say there is a 10% chance. We hold on to that. Hey, that is 10 out of 100! Miracles happen in places like this.Hugs to all my friends who have prayed, lit candles, sent energy, just...everything, to my little man. I can never say enough thanks.

Saturday, September 27, 2008

152nd Day in the NICU

Today my Father-In-Law came down so that he can watch the kids so that Drayke's Mom and I can spend time at the hospital for the next 2 weeks. So far he is doing really good. He has not destat'd at all today. He was awake for a bit when his grandma and Aunt came to visit. He seemed to be happy most of the day. His nurse Pam asked to have him today so now she has had him for 2 full days. She seems to love him LOL. Who wouldn't honestly.

Nurses are now getting to know what Drayke is really like when he is not destat'ing all the time. He is so sweet and adorable. We know that him being good right now means that things are working. We are hoping for a miracle because he is a miracle to be here to begin with. He is currently 9 lb 9 oz. He has been losing weight and that could be because he was taken off of his feedings for half a day and put back on later. He is eating again. Currently he is on Morphine, Adavan (sp?), Lasixs, Versed, and some other diaretic stuff.

Thanks to all those that are praying for him and that are commenting. We read everyones comments and we appreciate all the support we are getting.

Friday, September 26, 2008

151st Day in the NICU (Part 2)

So to give a little more update on Drayke. Dr W (Attending at Vandy) talked to Dr Sweets (Pulmonary Dr at St Louis). This just about sucked when Dr W told us the news. Apparently we were lied to about the transplant by the transplant coordinator. It was more than just one department that decided Drayke was not a candidate for a transplant. Apparently he was never a candidate for a tranplant. Now mind you we were told it was just one dept and that when he gains more weight and becomes more stabile he would be reconsidered. Apparently that was not the truth either. He will have to be at least a year old and he has to have little to no brain damage from the lack of Oxygen from his destat's.

So right now Dr W's goal is to get him well enough to be sent home. He says there is pretty much no chance of survival. We did talk to cardiology and pulmonary drs at Vandy. They are giving him a 10% chance of surviving. The Cadiology/Pulmonary people wanted to become aggressive with Drayke's treatment. The are going to put a PIC line in and start him on a drug called Milrinone. It is supposed to help him.

After he got his PIC line and his first dose of Milrinone he started to stat pretty good. They also adjusted his vent settings as well.

151st Day in the NICU

Drayke is not handling the transport to Vanderbilt very well. He was transferred Wednesday and has been going thru many spells of de-saturating his oxygen levels. It keeps going anywhere from 17 to the high 90s so we dont know if there has been any brain damage yet. Dr W did say if he consistantly stays in the 40s then there will be damage. Thank the gods for small miracles of not staying low for too long.

This morning when I called the nurse told me he had a very rough night and is now on a morphine drip along with clear fluids. His feedings have been suspended due to the bagging they need to do when his sats get so far down. They do not want to risk him aspirating formula into his lungs. He is also still getting Versed and Ativan to help keep him sedated and calm to not overwork his very enlarged heart as well as other assorted meds for his pulmonary hypertension.

I am still amazed that he is now 9 pounds 14 ounces as of last night.

Please pray for my little dragon. I dont know how much longer he is going to be with us.


Wednesday, September 24, 2008

149th Day in the NICU

Drayke was transfered to Vanderbilt Childrens today. There is so much to post but I will make it short and update more information later. He hated the ambulance ride. He is on maximum pressure, maximum O2, and Maximum Nitric until they can settle him down. He had to be sedated because he is just not a happy boy with the transfer at the moment. His stats look good. Dr at the hospital mentioned that he has never seen lungs worse than Draykes. (We knew they would say something along these lines). Very emotional day. He has his own room.

Monday, September 22, 2008

147th Day in the NICU

(MOM)

I went to see Drayke for a couple of hours. Turns out he LOVES bubble baths and has been quite the happy camper since. He was grumpy about his respiratory treatment but settled right back down in a few minutes. I changed him into one of the adorable outfits that a friend of mine sent to my little bubble blowing dragon.

He is going to be getting transferred to Vanderbilt sometime this week and I am already feeling a bit lost knowing we will no longer be in our familiar surroundings at Centennial. The nurses were all telling me to keep them up to date on Drayke's progress. We have been at this hospital for more than five and a half months. This place has been a second home to me and the only home Drayke has known. He is currently 9lbs 5 oz and he is 19 3/4 inches long. He is constantly growing.

Sunday, September 21, 2008

146th Day in the NICU

Today I got to go up and see him all by himself. He has been doing good for the last few days. While I was there he did not de'stat once. Dr I came by and told me that they are still waiting for a bed for little man at Vandy. I asked him about the way Drayke has been de'statting and if that could affect him but Dr I said that there is no telling but he did have a child that constantly flatlined and he appears to be doing fine today. I know that there is always a chance but still there is hope.

He was grabbing his thumb and pulling on it. He got a mad when he went poop in his diaper but he got better. One other thing is that when I put his animals near him he reaches for them and rubs his hand on them so this means at least he is working on his motor skills and noticing textures. I spent about 3 hours with him and then headed home. Part of me does not want him to leave Centennial but at the same time he is getting bigger and Vandy does have a Pulmonologist there.

Saturday, September 20, 2008

145th Day in the NICU

Drayke currently weighs 9lb 4Oz. His CO2 was 66. He is statting well as of now. His vent settings are ever changing. The last few days have been pretty rough. He has had to be bagged a couple of times due to his O2 stats going down. A couple of times his heart rate has dropped as well. We are just scared to death what this means but of course he could just be having a rough week.

Drayke had his first bubble bath last night and loved it. He was looking around and smiling and has been statting well ever since. Maybe this is why he was having a rough week, He just wanted a bubble bath. LOL.

Both mom and I have talked long and hard about whether or not we should do the trach or not. We know that he is constantly de'statting and that could be because he does not want the tube in his mouth. He also keeps tensing up and that caused the tube to become crimped. He is getting old enough where he needs to start his oral skills. We can either keep going like we are going or try for the trach. We know that there is a chance that he could die during this surgery. After much discussion we did decide it is best for him to have the surgery. Mom talked to Dr I to contact Vanderbilt to schedule. The Dr and all the nurses agree that the trach will be the best thing in the world for Drayke. We will know more on Monday.

While mom was visiting Drayke on Saturday she was there to see the little girl, Jasmine, next to Draykes room, die. Death has been on both sides of our son now. First Jared in bed 6 a bit more than 2 months ago and now little Jasmine, who was about 3 weeks old in bed 8. Mom couldnt stop crying. To have things hit so close is so hard because you know what each of these parents have gone thru to get to this point and fearing that this could be us.

We need all the positive energy and prayers that you all can provide for us.

Thursday, September 18, 2008

143rd Day in the NICU

Today while we were out someone mentioned that there was an Article in the Marshall County Tribune. If you remember we had a reporter talk to us but we never knew the story was in the tribune. Apparently it was printed on 9-12-08. http://www.marshalltribune.com/story/1460563.html is the article but unfortunately it is not the full one. Click on the Picture below to see the entire article.



Today we got the go ahead from the bank and Drayke's Medical Fund is now setup. We are going to be opening a P.O.Box for those who are going to be sending checks. Right now the Bank is allowing people to go into their local branch and make a donation but they will have to state that they are wanting to make a deposit to Joan King, trustee, Drayke Crom Medical Fund. We also just setup a paypal account as well. (Check out the link to the right).

To everyone who has sent emails, snail mail, called us, or messaged us we want to express our greatest thanks for all the support we have been given. I am so glad we have such a good support structure that we can continue to rely on. Keep sending the prayers and positive energy our way.

Little one today just is so handsome. He is currently at 76% Oxygen which is just awesome. He is back up 1 oz to 8 lb 14 oz.

Wednesday, September 17, 2008

142nd Day in the NICU

Drayke lost some weight. He is now 8ln 13 oz. He only lost 4 oz which is not too much. They think it is because he is retaining some water. He was active today when Mom and Grandma went in and saw him. Mom spoke to Dr I about Dr H in regards to Dr H's care of Drayke. Dr I assured us that no Dr's are going to be allowed to make any changes to Drayke's care unless medically needed. This makes us feel so much better especially after Dr H decided to make all those changes a few weeks ago. Drayke is still around 80-90% O2. Occassionally he has a episode where he stats bad but that is because he throws a temper tantrum.

Monday, September 15, 2008

140th Day in the NICU

Today Drayke weighs 9 lbs. This past weekend they were able to lower his O2 requirements to 75%. Today he was at 80%. Dr decided there was no point to have him at 100% because he stat's the same at 80% as he does at 100%. His CO2 this morning was 57 which is great. His Ventilator setting are now at 60 BPM and his pressure is still 38/6. It is not the greatest but at least he is able to go down on his O2. He is still on 5 with the Nitric. He loves that stuff.

We went in to see him and he is getting so big. Spent sometime with him and played with him a bit. I leaned over and was kissing his head and kissing his fingers and he was at 92% on his stats so I think he enjoyed that. I walked away to give mom a few moments with him and I came back in and he was at 62% on his stat. He apparently did not want his diaper changed. A few moments later he was still and his Heart Rate on the monitor went to 0 and his chest got tense. The nurse started to shake him to get him to stop being so tense and then she had to bag him. Scariest sight I have seen. Well actually the 2nd. First time was when he extubated himself. He was turning blue and the nurse was able to get him to relax. Nurse stated that even though the screen showed 0 for his heart rate that he did have a heart rate and that the machine could not pick it up because he was so tense.

We had a little talk with Drayke in regards to giving his dad and mom a heart attack and to leave the turning blue to the baby that is known as the blue baby in the NICU. He settled out and was fine.

Apparently he really loves his rattle that the hang above him and his music-light box because he gets all types of happy. Nurses also says that he enjoys them talking to him. Recently he has been awake a lot more often which is a good thing but it also means that since he is getting older that he will become more and more frustrated. We are hoping we can get him a trach soon but would rather him be stable before doing that.

An Update on the Donation fund for Drayke. We are still working with Bank of America to get it all setup.

Friday, September 12, 2008

137th Day in the NICU

My Morning started with a call to Pegi and I left her a VM. Drayke is still 8 lbs 9 ozs and he is so chubby. Pegi called me back and we spoke in length. She stated that last week all the department met and they all were on board but the only team that was not there was the CT team. Well this week the CT team was there and they reviewed all the data. They feel that since Drayke had a issue coming back from the sedation from the CT scan last week that it would be a big risk to put him under for the surgery. Also his weight and him being unstable at times was a part of this.

I totally understand and I would rather Drayke be able to survive the surgery. Pegi did say that when Drayke becomes stable and his weight increases we can let them know and they will go over his case again. I asked her if Dr Sweet (World reknowned Pulmonologist) would do anything different than what the doctors at Centennial were doing and she said that when he went over Drayke's charts that he would be doing what Centennial is doing. This is a relief for me. Pegi did tell me that BPD can be overcome just by waiting and by him getting bigger and becoming more stable. The damage to the lungs are irreversible but he can overcome the BPD and if he overcomes that then the heart should get back to normal size. He still may need a transplant but she says there are kids that live for years with BPD and Enlarged hearts. Pegi told us to not to give up hope and that let the Doctors take care of him and with him being in the hospital it is easier for them to take care of him instead of us bringing him home and having to rush 1 1/2 hours to Centennial.

I asked her about changing hospitals and she said she could not tell me either way. Chances are that if we get a trach for Drayke that he would have to go to Vanderbilt and there is a chance they will not transfer him back. Either way we are a little relieved that this is not the end. There is a chance he can outgrow this and that we have a goal to reach in order to get him a transplant.

When we saw him today he was stat'ing in the mid to high 90's for the entire 2 hours that we were there. He did not destat once. He was looking around and smiling and sucking on my finger. Apparently he likes my finger better than Moms :-P. He definately has a personality and he loves to be talked to. We did mention to the nurse that we would like for him to start PT (Physical Therapy). Like laying in a bouncy seat type of chair. Even if it is not moving and he is just sitting in it. Maybe if we start getting him out of the bed and sitting up and start moving all about that his body will kick into gear and start producing the required items he needs to grow and get better.

We have decided that since COTA is only for those on a waiting list for a organ transplant and if we do not get a transplant all the donated money for Drayke would end up being sent to other needing family. We decided that it would be better to get in touch with the social worker at the hospital and see if there are any other way we can go about this instead of having people just donate money to us personally. (Donations have to be reported on taxes). We have talked to Bank of America about setting up a Foundation account for Drayke and we will get that going. We may even setup a Paypal account temporarily and when we get everything situated we can transfer that into the foundation or the charity that would hold the funds for Drayke.

Here are the pictures taken today.