Info about Drayke's memorial service

The service will be held on Saturday, January 31st at 5PM in the Vanderbilt Childrens Hospital Chapel, 2200 Childrens Way Nashville, TN 37232.

Dad & I are having an open service. We would love to see Drayke's nurses, doctors, respiratory therapists from both Centennial & Vandy, family, friends, everyone who was touched by his life, both directly and online.

If you do come please park in the south garage off of either Childrens Way or Pierce Ave. Go into the hospital thru the 2nd floor garage skywalk. At the far end of the floor is the chapel.

We are asking that no flowers be sent. Rather, please make a donation to the Ronald McDonald House Nashville in Drayke's name. Their information is:

Ronald McDonald House Charities of Nashville, Tennessee Inc.
2144 Fairfax Ave
Nashville, Tennessee 37212
615-343-4000
http://www.rmhnashville.com/main_page/index.html

To make a donation in his name please give them this information:

Drayke King-Crom
1401 Hobby Ln
Lewisburg TN 37091

God knows times are tough now. If you cant donate please volunteer your time to the RMH or children's hospital in your area.

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I will be writing a post about our last day with Drayke. I dont want to ever forget all that happend, how amazing everyone was during the hardest moments of our lives. Some may find it disturbing but I need to do this, For Drayke, dad & myself.

274th day in the NICU

At 8:55PM central time, Drayke Alan Crom passed from this world. He was two days shy of his nine month birthday.

There is going to be a memorial service at Vanderbilt Childrens Hospital in the chapel on Saturday.

I will be posting more info after dad & I get some rest.

274th Day in the NICU

I am going to make this very brief. One side of Drayke's heart is not working and they other half is working poorly. They have done all they can do. I will update more but as of right now he is not going to make it through the night. We are taking him off life support tonight because he cannot recover from this. We had at least 6 doctors tell us this. Also Drayke is telling us this because he saturations are dropping slowly. Currently he is on 100% O2 and he is saturating at 60%. Our little bug has been through enough. He is not responding to anything. We will post when he passes. One thing we did bring up is tissue and organ donation. They made calls and they can use his heart valves and Dr Prince says they can use some tissue for research so that it may save lives in the future.

273rd day in the NICU

Drayke is stable. His blood pressure is good and his heart rate is down to 140-150. Vent settings are high. O2 is at 100% with a PEEP of 10 & pressure support at 14. He is still puffy but not nearly as bad as yesterday. Urine output is great. Tomorrow he is getting an echo and we already know it is going to be terrible. A quick ultrasound last night showed that his right heart is hardly doing anything at all. So basically we are all the way back to where we were when we first got to Vandy. Drayke's hands & feet have finally started to warm up again so that means we are again getting good blood flow to his extremeties.

The doctors main concern at this time is his heart. With the function being so poor it could give out, but that was before he went back onto milrinone. That stuff worked miracles before. He has a slight galloping sound to his heart beat that he has had before. Dr M said today that they are hopeful since he has proven before that he is a very strong young man.

From all of his blood work it appears that the NEC is clearing up.

And all this was caused by catching the flu. Fortunately no other babies in our pod have it (there are 6 rooms). In a few days we are going to start weaning some meds to see what he can tolerate.

I am hoping he wakes up sometime soon. I miss his gorgeous eyes and wiggliness.

Thank you all for the prayers and well wishes.

We just called his nite nurse and Drayke is licking his lips and moving a little bit. She was very excited to see this given he has not moved for four days.

272nd day in the NICU

Drayke is not doing well. Thursday night his temp kept fluxuating and his belly was distending. At 7:30PM he had another seizure that was a lot more pronounced that the previous one. He went from 43 to 50 on his girth within a few hours. An xray and 2 ultrasounds of his belly showed air was in the large veinous areas of his liver indicating bowel problems. He has NEC, Necrotizing enterocolitis .

http://kidshealth.org/parent/medical/digestive/nec.html

This disease is extemely rare in infants his age. Also every other test known to man was run on him & found he has the flu. Gods knows how he contacted it but Dr M stated it is possible for NEC to happen due to the flu, again very rare but thats what we have.

Late Thursday night Drayke was taken to the OR for emergency exploratory surgery to remove any dead bowel. When they got in there he had some greyish areas but no black so they did not remove anything, hoping that the antibiotics he is now on will kill that infection. His nite primary nurse came in on her day off to be with dad & me and she stayed with Drayke until 5AM Friday morning. During and after the surgery his saturations were great until earlier today when the flu finally hit his respiratory system. He is at 100% O2 and they have increased his pressures. His belly is being vented from his Gtube plus one going down thru his nose. Feeds have stopped to rest the bowels so they can heal.

Due to the surgery he is receiving a lot of blood products and is receiving 10 separate IV medications. In the OR he got another central line put in that is having problems clotting off. Due to everything that is going on he is getting a bit puffy but not nearly as bad as he was in mid September.

The latest ultrasound is showing no air in his liver but his heart function is not good. The worst thing that could happen to a pulmonary hypertension baby is happening. He got sick with a virus. I wish is would have been staph or some other bacterial infection. Those you can kill with meds. Viral means he has to ride it out.

God knows what is going to happen. We are praying that today he hit the bottom. If he gets any worse I do not think he can survive. He was doing so great after the surgery last week and all that progress has been lost.

He turns nine months old in four days.

EDIT: I was just informed by a doctor at the hospital that Drayke is going into congestive heart failure. Heading out now.

270th day in the NICU

Drayke is not feeling good today. Yesterday he was spiking a fever of around 101. We were thinking/hoping it was one of his normal "I have been weaned to quickly off of one of my meds" fevers and that it would resolve within 3 hours or so. We also noticed that his resting heart rate ws unusually high, hanging around 160. His normal resting rate is between 90-120. So this was of concern to me & dad.

As the day progressed the temp kept fluxuating between 101 to 103. His night nurse gave him at least two baths to cool him down.

This morning his temp is still between 102-103 and his resting heart rate is 200+. Dr M has put him on antibiotics until we see what the blood culture is doing. His white blood cell count is a little elevated but not enough to indicate much of anything. A urine sample was taken and they even thouroughly cleaned out his ears to get a good look. We are also going to get a throat swab done to check for strep and RSV.

While his day nurse was cleaning up his GJ tube site Drayke had a febrial seizure that lasted about a minute or so. The Fellow was just down the hall and I grabbed her to see what was happening. She then got Dr M and we discussed how this can happen with fevers. She said to Drayke "you get a free pass on this one" but if it happens again we will do an EEG and a lumbar punch to rule out meningitis.

We knew going in to surgery that there could be complications. We are sure that if this is some kind of infection we will knock it down fairly quickly.

If you would like to read more on febrile seizures please goto:
http://www.marchofdimes.com/pnhec/298_9543.asp

269th day in the NICU

It has been an amazing few days. Drayke's lungs have vastly improved. As in, for the first time, he has clear lungs. No signs of collapse or fluid. When you listen to him his RT's are asking "is this Drayke? There is no way this is the same boy, he sounds great!".

I have always had the feeling that if we get the trach things are going to change for the better and they have.

It has been cute watching him use his tongue to try to figure out where his tube has gone. He has started to make little popping noises with his lips.

Saturday & Sunday Little Man did not want to sleep. All he wanted to do was wiggle. Dr M was saying how its great that he doesnt seem like he is experiencing any discomfort but we cant have him moving around so much. They dont want the hole in his throat to get bigger so his morphine and ativan have been increased. So much so that when he does sleep he makes the vent do al the work.

Dr Y, Drayke's surgeon, came by yesterday and told Dr M & me that he sees no reason to have the baby snowed so the weaning process is beginning. Feeds are almost back up to where he was last weak.

The big change has been on his vent. O2 is 45. The pressure has been dropped from 25 to 22. PEEP from 10 to 8! These are the kinds of changes that will determine if he goes home with a vent or not. I am keeping in the back of my mind it may be possible. With all these changes his saturations are 98-100.

Next week we are going to start the weaning of the nitric again as well as get an updated echo. This one and the echo 3 weeks later is going to be really interesting. Is there going to be a change for the better? In my heart I believe there will be.

Almost forgot: his weight on Monday night was 15 pounds 6 ounces and today they are starting him on size 3 diapers.

265th day in the NICU

What a wonderful day! We finally have a tape free baby boy!


Dad & I were at the hospital by 6:30 this morning. Niether of us slept a wink last night but we were both amazingly very awake. I was able to hold Drayke for almost an hour before Dr Y came in at 7:45 to go over the procedures. The anesthesiologist came in almost 30 minutes later to start his meds & finally everyone else came in to get him rolled out. Several nurses and respiratory therapists came by to wish him luck and hug us since everyone knows how long we have been waiting for this day and how high risk surgery is on a pulmonary hypertension baby. We were able to follow along until we got to the main doors into the OR.

We went back up to his room to wait. After about 10 minutes or so we got a call from Dr Y. Oh god, what has gone wrong? Turns out he wanted to tell us Drayke has a left groin hernia & do we want to go ahead & get that fixed. Sure, go ahead. Panic averted.

Dad worked and I looked at the news & watched an episode of Greys Anatomy. At taht point 3 hours had passed in what felt like no time at all. I got antsy & shut down my laptop telling dad I need to move. I looked over & saw Drayke's nurse on the phone. I stared at her her until she finally looked at me then she gave me the thumbs up. She was talking with the OR.

Drayke didnt just do ok during the surgery, he did awesome according to the OR nurse. He saturated at 95-100 during the entire surgery and they never had to raise his oxygen nor nitric. So, he has his trach, GJ tube, hernia repair & circumcision. The nissen was not done due to concern of potential problems that could have occurred in the OR & we all felt it was more important that he could feed rather than not potentially reflux.

Dr M, his attending this month, kept stopping in today, blown away by how well he is doing. Even his former day primary nurse came in to visit him. He is quite the talk of the floor. PH babies are just not supposed to be able to do this well. Now to make sure he stays calm he is under a LOT of sedation. LOTS of morphine & ativan. This will continue over the next 4 days then we will start the weaning process. After a week we will be changing out his trach tube and physical, speech & occupational therapy can finally really start to work with him. We have already planned to bring his swing in next week as well. His life is finally going to have some normality.

Drayke is loved, not only by his blood family, but the people at the hospital that take care of him every day, friend and co-workers and people who know of his story. Thank you so much for the overwhelming amount support & encouragement. We would not have been able to make it this far without you all.

261st day in the NICU

The care conference went very well today. As in surprisingly well. It does make a difference when your attending specializes in pulmonary hypertension. She is amazed at how tough Drayke is and is projecting he may be home by his first birthday. She does not believe in using paralytics on babies so he will have a signifigant amount of pain meds for about 4 days. At least we wont shut down his bowels like what happened while on the vecuronium. Dr M also mentioned how they are keeping Drayke on tight calorie control. She does not want him to get too chubby because that would cause more of a strain on his lungs & heart.

So we are a go for Friday. He officially goes on "the board" tomorrow and that is when we will find out the time.

One of the surgeons came in and told us how the procedure will go. He was talkng about how the G tube and nissen will be done as an "open" procedure, not laproscopicly(sp?). I asked him how large the incision will be, expecting a couple of inches, which on a baby's belly would be huge. He advsied it is going to be maybe 2-3 centimeters. He will hardly have any scarring at all.

All in all the surgery should be no longer than 3 hours. Dad & I are counting down until Friday.

On a different note: I made Drayke 2 receiving blankets from fabric purchased at Walmart a few months ago (see Day 230 to view the fabric, http://draykecrom.blogspot.com/2008/12/230th-day-in-nicu.html). I can not find them anywhere now. They have been lost either at the hospital, on a transport shuttle or here at the RMC. Has anyone seen this fabric anywhere? Our Walmart no longer sells fabric and I am REALLY wanting to get more of this fabric. It is called zen monkey, the base color is purple/lilac/lavender. Thanks for any help tracking this down.

260th Day in the NICU

Big things are happening this week. Drayke is scheduled for surgery this coming Friday!

The procedures being are: tracheostomy,Gastrostomy/Jejunostomy and a Nissen fundoplication. In other words his vent is going to be connected at the throat rather than having that infernal tube thru his mouth. His feedings will be going thru a tube that has a port on his belly. He WILL be able to feed thru his mouth but it will take time to get him used to actually feeding. The Nissen is for his reflux.

Drayke had an upper GI done yesterday and he does show signs of reflux. The doctors are all wanting to protect his airway at all costs. A serious aspiration could cause a non reversable downward slide. As much as I didnt want to do this procedure it is necessary.

Wednesday is going to be a big care conference with his doctors and the surgeons so we all are on board with what the next few weeks hold in store for us. This can bring us a step closer to coming home. Drayke does have a long road in front of him in the hospital but this is the first significant step.

He will be fairly snowed for about 4-5 days to make sure he does not pull out his trach. It will seal back up almost immediately during that first week. But after that we can start feeding him with a bottle or even solids. He can have a bath in a tub. He can use his bumbo chair. Just so many things are soon to be available to him.

I have been getting weepy by the overwhelming feelings. I am terrified, ecstatic, just a whole gambit of emotions. I will finally be able to pick my son up for the first time in months without having to have a nurse helping. He will no longer have to go thru getting tape put all over his face to keep the vent in place. He can start having the mobility an average infant should have.

Everything in his little world is changing.

255th Day in the NICU

Tuesday & Wednesday were very stressful days. Drayke's saturations were hanging out in the high 70s to mid 80s with his resting heart rate around 140. Much higher than his norm during the month of December. All I could think was "are we going to have a repeat November, being a bad month?"


Wednesday he had a new echo done and the results came back fairly quickly. The cardiologist said it was worse that his five previous echos. WTF? Did we go that far backwards in less than three weeks? is nitric oxde was put back up to 20 PPM & the ativan & methadone were moved back to Q6 and adjusted for his weight. I was weepy for the rest of the day & could not get to sleep until 7:30 this morning.


When I got to the hospital today his nurse paged Drayke's attending because she wanted to talk to me. Akk. Nerves on edge even more. She called in a few minutes and we spoke for almost 10 minutes. Dr M, little man's cardiologist went over the echo himself and assured the attending it was not as bad as the other doc interpretted it. We have gone backwards a little, definately not all the way back to October. The attending said we are going to work on the weaning again a bit slower than before. She is however wanting the trach to be done within the next week or so. The surgical team is on board with doing both the trach & g-tube at the same time. His cardiologist is ok with the surgery as long as Drayke is clinically stable.


Today, Drayke has been saturating back in the high 90's and his heart rate is lower now. Much more like my good little boy. I think I can breath again.

253rd Day in the NICU

Sorry I have been lax on keeping everything updated. I havent even updated my own personal journal.

New Years Eve was spent at the hospital. The charge nurse passed out sparkling grape juice of which Drayke partook (is that even a word?) of. Well, he had a tiny taste on his lip because he was passed out asleep. She also made a sign for him that said "Please help to Get Drayke a Trach Foundation, Please sign below". Dad & I laughed our backsides off and took pics of it. We also said how some doctor is gonna come by and take it down because they have no sense of humor. Sure as anything, the next morning it was gone. The charge nurse is going to make another one for us to keep.

Last night was his once a week weigh in and measure. My little man is not so little any more. 14 pounds 7 ounces and 23.75 inches long.

Dad & I spoke to his new attending last night and she is really wanting to get the trach moving along so she is switching his vent to pressure control rather than volume control. Over the weekend the nitric was dropped from 8 to 5.

So far he is saturating in the 80s for the most part. Occasionally he is popping up to the 90s. After talking with his night nurse we are figuring he is going thru some withdrawls due to the change in his methodone from Q6 to Q8. As of 10pm tonight they have put him back to Q6.

I gave Drayke a bath all by myself. That is no easy feat with everything that his is attached to, but I managed it!