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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

136th Day in the NICU

Today has been really depressing. We got a call from the hospital to say that Drayke has been stat'ing in the 50's and they were going to put him back on Nitric. Also Dr P wanted to talk to us. We got done with the errands we had to run. We got in and little man was stat'ing in the 80's. Dr P sat us down and told us the devastating news.

Drayke's application for a lung transplant has been rejected. Dr P said that Pegi stat'd the reason was because he was not stable and he needed to be double his weight. He also told us that we needed to call Pegi to get more details. It was already to late to call her so we have to wait till tomorrow.

At this time both mom and I was beginning to lose it. Mom was tearing up and at that moment Drayke sensed something was wrong and his lungs and trachea became tensed and he started to destat. We walked out of the room to have the doctors work on him.

We came back in later and he was receiving a aresol treatment and his stat's were better. He was stating in the mid to high 90's. His Nitric was at 5ml. His eyes were open and looking all around and his was sucking on his hand. We sat there and talked to him and he was responding so well. Mom asked Dr P for a X-ray on his chest. He immediately ordered it and when it came back it showed really no difference. His heart is still enlarged. We are not ready to give up.

I called a lady back that has been through a transplant and we spoke over the phone for almost 40 min. We spoke about alot of issues that can come out of a transplant. My heart goes out to all she has been through. Even after hearing what she had to say I still want to go through this to give him a chance. With everything there are both positives and negatives.

134th Day in the NICU

So today we got woken up with a phone call from the Marshall Tribune in regards to a email that was sent to them. Just for privacy I am just going to call the person that emailed the tribune S.H. because I really do not know who this person is but if you are reading this thank you so much. The journalist got some information from Mom. I am not sure if they are going to post a story about Drayke but still any media coverage would definitely help us fundraise for our little one.

After getting off the phone with the reporter Mom got another call and this time it was from the transplant coordinator for Tenncare. Mom and (I think the lady's name was Bev) spoke for a while. Apparently Bev spoke with Pegi and Pegi does not think Drayke's PVL is going to be an issue and that they are waiting till Drayke is a little more stable and waiting for a bed to open up at St Louis before transferring him. We have not heard directly from Pegi or our doctors yet but if Pegi and Bev has spoken and started to get the insurance stuff addressed then I am going to consider this close to a done deal.

Tenncare also made mention of all the items they are going to pay for. Pretty much everything medical for Drayke. If the Ronald McDonald Apartments are full they will pay for the hotel room for 1 parent, cost of food (reimbursement), and gas (reimbursement). When I (Dad) have to travel up there I will have to pay for my travel, food and gas. Now when Drayke is released to go home and needs to go back once a month to St Louis then Tenncare will be covering the trip as well. So even though we do not need the approximately $500K for the surgery we will still need to fundraise for any medical costs that will not be covered for insurance (including medications, medical supplies, etc), housing, food, and traveling expenses while in St Louis (since most of this is reimbursed it has to come out of the pocket), and loss of wages since Mom will not be able to work and I will have to take some time off to go up there and visit him. Also I will have to take time off in order to attend the classes for his care.

We are getting set up with COTA shortly. There are 4 positions that have to be filled before it can be completed. We currently have the Trustee but we still have to fill the following positions:

• Campaign Coordinator
• Public Relation Coordinator
• Webmaster

If you are interested in assisting let me know by emailing me at kapua51@yahoo.com and Mom at lking1963@gmail.com.

Draykes CO2 this morning was 62 which is the best it has been in a long time. He also weighs 8lbs 4 oz. His length is only 18 and 3/4 inches long. He is still getting chubby. His night time nurse told us that he has not stat'd below 90 on his O2. He is still currently at 100% Oz, 38/6 on his pressure and 60 BPM. He is doing better. Mom will be getting to hold little man tomorrow because it is her Birthday.

133rd Day in the NICU

(Mom)

Today little man is 19 weeks old (7 weeks 3 days if we go by his actual due date)! He currently weighs 8 pounds 4 ounces. I am so blown away by this. The night nurse dressed him in one of his "Wash" shirts (the original plan was to take him to DragonCon this year dressed as baby Wash from Firefly complete with toy dinos). I now just call it his big boy shirt since it is a fully button down shirt, not snaps. The second pic is of him bundled up with a teddy bear, being watched over by one of his dragons.





I held him for about 30 minutes today and he was so well behaved. He did not de-sat once. My happy baby dragon.

131st Day in the NICU

Drayke is still trying to recover from the CT Scan. We spoke to Dr Karmo today and he said that the reason Drayke stat's are not as good as they were is because Drayke was worn out from the CT Scan but he did better than Dr Karmo thought he was going to do. Now the CT scan showed a small PVL. He did not saw how big or anything. I am not concerned with that. Dr Karmo talked to Pegi at St Louis and she does not know if this will effect his chance at a lung transplant. Also they decided to wait on everything else (I.E. Trach and upping his Viagra dose). They have fed-ex'd the scan to St Louis so we are just waiting on this to get done.

Since he is 4 months old he is going to get his shots. We asked them to not do a cocktail of shots and do them individually. Today he got 2 of his shots. Tomorrow they will give him 1 shot and Monday 2 shots. We also authorized them to give him the Hep B shot that we did not have them give him at 2 months. We had them give him this because he has to have it before the transplant and will not be able to get it after the transplant.

He is currently eating 56 CC's of formula (Still done by a tube). He also now weighs 8 lbs 1 oz. He is becoming such a big boy. He has gained more than 400 grams in a week.

Here is a currrent picture of our little one.

130th Day in the NICU

Today Drayke has had a rough day he is still recovering from the CT scan. His CO2 level was 113 which is pretty bad. They upped his BPMs to 65 and his pressure to 38/6. His blood pressure is doing good.

We received the packet from St Louis today that had all the information in regards to the transplant. It is so damn scary to read but they have to legally list everything. In fact it seems like most parents have to learn to be nurses so that they can do blood draws, PIC Line maintainence, medication care, along with much more things.

I called Pegi and left a VM and she called me back about 30 min later. She assured me that Drayke will be able to go to school even though he can never get any live virus vaccinations. Also she assured me that the 1 out of every 2 children that get lung transplants die at the age of 5 years is due to the child not taking the medication or the parents neglecting the care. (Of course they are not allowed to put that in the paper work of course). Chances are Drayke and Mom will be up in St Louis for 6 months or so. Pegi said she has seen donors come as quickly as a week to a year so there is no telling. They also stated that even though Centennial is a good hospital they are not equipped to deal with Draykes condition. One good thing that Pegi is going to be doing is having families that have gone through this give Mom a call and help us both through this time. She is going to get parents with different age kids to help us through this.

I went out and printed out all the pictures I had of little one. He had 400 some odd pictures. Bad thing was that I took the pictures off the computer and then I took the current ones that were on the camera and saved them on the disk without realizing there were duplicates so I printed out 541 pictures. Close to 170 of them were duplicates but at least I can send them out to people. I also bought a 600 photo album. Mom and I put it together and we can see so many differences that has occured since birth.

Here are pictures of him at birth. The little sticker on his belly looks huge.

Picture to the left was taken on 9/2 and the picture on the right was taken on 8/21. See how small the little sticker looks on him now.

128th Day in the NICU

Today Drayke got his CT Scan done. He did good but they have to put him on 100% support and sedate him completely to do it. They had to bag him because they had to move him from one floor to another. He is currently resting. We are waiting on this to be read so that St Louis can tell us if he has been approved or not.

126th Day in the NICU

Today Drayke weighs 7lbs 1 oz. He keeps bouncing back and forth. They switched him back to regular formula with some powdered formula added in to increase his calorie intake. Also the upped his Viagra solution to 4.5 yesterday. His CO2 this morning was 80. Today they have been changing his O2 from mid 90's yo high 90's.

We went to visit him today and he was doing good. he ended up being awake for most of the time we were there. We changed him into his new garanimals outfit that has a dragon blowing bubbles. It so is like him considering his name means dragon and he likes to blow bubbles. He so has my eye color (Grey). He is just one wonderful baby boy.

Since today is a holiday we are not going to hear from St Louis till hopefully tomorrow. (Either way we will call them). Dr Karmo was going to schedule the Echo today for his heart but decided to wait till tomorrow when the orginal tech that took his echo will be on. Hopefully his heart has gotten better. Also Dr Karmo is going to call Vanderbilt to get a surgery date for Drayke's Trach. He should only be over there for 2 days or so to recover then we can get him transfered back to Centennial. Dr Karmo stated that Bed 7 is Drayke's spot until we tell them that he is not coming back.

Here are just some adorable pictures to share.