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

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.

183rd Day in the NICU

Drayke turned 6 months old today!!

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.