Home Vent

Been another crazy couple of weeks! Our doctor decided to go ahead and try Greyson on a home vent last week. They have decided that they would like for him to be on that vent when and if he has to go on dialysis. I think its more for mobility purposes. As long as he's on a regular vent he has to be in an icu unit. If he's able to transition to a home vent then they can move him to the pulmonary floor. And right now they feel like that would be best for Greyson. It's a much smaller unit and they deal with these chronic bpd (lung issues) babies. I met the main Pulmonary doctor yesterday and I really liked him! He was very positive and was impressed with how well Grey is doing. He said they can also do the dialysis in that unit! Anyway they put him on the home vent on Wednesday but by Sunday he was back on the regular vent =( just really didn't love it. So the plan is to let him rest for another week(ish) and try again. The pulmonary doctor said he would make sure to come up and see if he can tweak some things to Greyson's liking. Since that's what he deals with everyday maybe he'll have a few pointers. We're hoping and praying that things go better next time and that he won't hate it =( he was really pitiful last week. If he was awake he was fussing. So no fun! But literally as soon as they put him back on this vent he was a happy camper! Wish they made it in a smaller version =/ Continue to keep us in your prayers! Greyson will most likely be having some big changes happen in the next few months. We're hoping and praying he tolerates them well and Paul and I can take this baby home soon! Here's a few pictures:

 Playing!

Philippians 1:6 Being confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus.

Greyson's Room!

So the past few weekends I've been able to come home and work on our new house! Paul and I recently moved into a new home (new to us) It was a foreclosure and we've been working on it for what seems like forever =) Recently I realized that I hated Greyson's room =( It looked like it was just an after thought and I just kinda threw some stuff in there. So my mom, sister and I have been working on it and its now my favorite room in the house and I just had to show it off =)

Letters I made for his wall

 

Curtains my sister made =)

Rug my Mom bought

All of it in the room!

Paul's mom bought these adorable animals forever ago and I finally got to use them!

Don't look too close =) I don't have knobs on the dresser yet because I want to stain it darker =)

Another view

 So now Greyson has a room to come home to! Still have no idea when that will be but He is still doing well and making progress so hopefully it'll be sooner rather than later!

Doing good!

Hello! Greyson is still doing great! They have been able to ween his vent a lot in the last couple of weeks and he has handled it beautifully! They are even talking about trying him off of the vent if we can ween him down a little further! Very exciting! We'll just have to see how it goes. They said there is a possibility that maybe we could take him off in the day time and put him back on it during the night or even for short periods of time during the day if he needs it. That's the nice thing about having a trache, you can easily go back and forth between the vent which is common during the weening process in a baby that has been on a ventilator this long. If he doesn't tolerate any of that then we will most likely go to a home vent and just ween him off of it very slowly. Greyson has still been very happy for the most part, he is holding his head a lot better, reaching for his toys and is very active! He has gotten to where he doesn't love to be laying in the bed all the time! He likes to sit up and loves to be held! I know I say this all the time but he seriously has to have a tooth ready to come through soon! His hands are constantly in his mouth and he has started chewing on some of his toys! We are still having some issues with his electrolytes due to his kidneys. Please continue to keep him and us in your prayers as Greyson will most likely have to have dialysis in the future. But as of right now we are so thrilled and thankful that Grey really is doing very well and has come so far in the past few months! Psalm 3:3 " But you, O Lord, are a shield for me, my glory and the lifter of my head."

 Yummy hand!

His favorite past time- watching a movie =)

 Sweet boy! 

Peek a boo!

Happy Spring!

Never a dull moment around here! Greyson is doing really well THIS week! Last week on the other hand was kinda crazy! His kidneys were giving us a run for our money! To the point where our kidney doctors were talking dialysis =( What happened was after his surgery all of his electrolytes got out of wack because we had to stop his feeds and go on iv fluids. Well the way his kidneys work we have to give him many supplements thru his feeds to keep up with everything that his kidneys get rid of instead of hold onto like their supposed to do. This sounds pretty simple but the docs and practitioners have it down to a fine art. Anyway at one point they got behind on his fluids and he got slightly dehydrated (Not as bad as it sounds but his kidneys need to be wet wet wet) which caused his creatnin to go up wich made the docs overload him with fluid which in turn helped his creatnin but his kidneys just flushed everything out with it. So his electrolytes were seriously out of wack. On Friday the renal docs said they wanted to have a meeting with us on monday (never a good thing) Thankfully because we have the best doctors and practitioners in the world! And they know Greyson so well they were able to get everything back in line by Monday and we actually had a very positive meeting with the doctors! Praise the Lord! This momma was seriously worried! They are all very encouraged by the improvements he's making pulmonary wise. On another note. Our neonatologist (who we LOVE by the way!) wanted to try Greyson on this new type of ventilator they've recently had come available. Its called a NAVA vent. Paul could explain this much better than I can but my understanding is it picks up the signal the brain sends to the diaphragm telling him how deep and how long of a breath he needs to take and gives him that. So it's totally insync with what he needs, cutting down on unneeded breaths and pressure allowing his lungs to relax and grow stronger. Only down side is he has to have a tube down his nose =( Just thought we got rid of those! Its the probe that actually gets the signal from that nerve in his diaphragm. Anyway he's been like a different baby since they started this! He's so happy and relaxed! And they've already been able to ween it down some. Went from a not so great week last week to this week which has been awesome and we are so so thankful!! We love you all and are so appreciative of your continued support and prayers! Psalm 41:10 Fear not for I am with you; be not dismayed, for I am your God. I will strengthen you. I will help you, I will uphold you with my righteous right hand.

We have to keep socks on his hand a good bit because he likes to yank that tube out of his nose! (I don't blame him)

Update

Greyson has done very well after his surgery! He's been a trooper! We had a few issues with his feeding tube a couple days after he got it so he had to go back downstairs to have it checked out. Always fun to get a baby on a ventilator from the 7th floor to the 2nd (Not!) But he handled it all really well and everything checked out fine! He's almost back up to his full amount on his feeds and so far so good. One thing you all could pray for are his kidneys. Recently having some blood pressure and growth issues related to his kidneys. His blood pressure has been really high so they started a bp med yesterday and upped his fluids a good bit. So far it seems to be helping. His creatnin (how they determine his kidney function) was down a good bit this morning. That's a good thing! Lower the better. His growth seems to have dropped off a little bit which is also related to his kidneys. He's been on a growth hormone for probably over a month now and I think they were hoping to see more of a difference by now. This is definitely not something he's ever had an issue with! In his short 15 months he's already been on a diet! So normally growth is not an issue! But besides all that his doctor said he feels like he's doing very well! His lungs seem to be improving which is a huge answer to prayer! Here's a few pictures from a couple nights ago before we gave him his bath:

Greyson's room

His movies and books

His blankets and clothes have to coordinate =)

Favorite soap right now: Honey Apple! Thanks Aunt Jenn!

He's thinking 'If I ignore her, she'll go away'

Can u tell He hates bath time?!  What are you about to do to me?

Needless to say I have no pictures of the actual bath! They wouldn't be pretty! =) Thanks for checking! Love you guys!

Surgery Day! Fo real this time! =)

Well today has been busy busy! Greyson went to surgery to have a feeding tube placed and get tubes in his ears. He ended going around 8:30am Paul and I were once again rushing to get there! Paul was driving from Huntsville but we both made it in time to help load him up and walk down with him! He was in a great mood! We were all back in his room by noon. Everything went the way it was supposed to. He was still pretty out of it when he got back but it didn't take long at all before he started waking up! He was awake and watching his favorite sesame street movie trying to get his hands in his mouth after a few minutes. Thank you all for keeping us in your prayers! Were definitely headed in the right direction! The next step will be to get him on a home vent and they'll probably move us out of the nicu =( to the pulmonary floor for all of our training and whatever else Greyson will have to do before they'll let him go home. Hopefully his recovery today wont be bad! He didn't seem to be in much pain but I guess time will tell =) Keep those prayers coming! Were getting there!

 Starting to wake up

 Gettin some lovin'

 All back to normal! =)

Little Romeo =)

Happy Valentine's Day! Greyson is doing pretty good! Hasn't run a fever since friday but he has been junky like he's caught a cold. Could still be teething but I think it's probably a little more than that. Thankfully we haven't had to go up on oxygen or vent settings so he seems to be holding his own pretty well right now. Not sure when they'll reschedule his surgery but it probably won't be right away. My sister made Grey a cutie patootie onsies for valentines day, had to get some pictures in it =)

  My Valentines!

 Gettin some sugar 

 Romeo

Red light, Green light

Well what a crazy crazy morning! First off they told us surgery wouldn't be until 9 or 10 this morning. Well if we've figured out one thing since being here it's that surgery is never when they say it will be. Usually later than they tell u. So Paul and I planned to get there at 9 as usual figuring we'd be there all day. Well I get a call at 8:15 from our nurse saying surgery is ready for him! So Paul and I fly over there and turns out surgery had canceled his surgery because his sodium level was too low. It was 127 they wanted it to be 130. Seriously?! So our practitioner talked to the anesthesiologist and told him this is always something we deal with with Grey and to let us try to get it back up by noon. He agreed. So by 11:30 sodium level was 131! Yay! Surgery said great, get his vitals and send him down. So I'm changing his diaper and Paul is taking his temp, our nurse is getting his blood pressure. Everything's great except its taking Paul forever to get his temp because it keeps going up!! He's running a fever!!! Ugh! Needless to say no surgery today! =( I definitely think its meant to be! We're hoping maybe he's just teething but they are running more labs to see if anything shows up. Besides the fever he's acting fine. As you can see from the picture. Being really sweet. His satts are great, actually down on his oxygen from yesterday. So I guess we'll see. Keep him in your prayers! Hopefully we'll be able to reschedule it soon.     

Surgery

Surgery is planned for tomorrow morning 2/11 at around 9 or 10 am! Keep us in your prayers. Greyson will be having a g-tube placed and tubes put in his ears. They have told us these are pretty minor surgeries but the g-tube might be tricky for Greyson because of his lack of stomach muscles and the fact that the g-tube is inserted and attached to the stomach muscles. Hopefully all will go well and it will work properly! The g-tube is how he will get fed. Instead of that yellow tube on his face, he'll have a small port in his belly where the tube will go for his food. This is just one step closer to getting us home! They've told me it's very simple to operate and maintain ;) we'll see! It will be nice to kiss those cheeks without tape on them! :)

It's been a crazy couple of weeks! We thought that Greyson had caught the flu the weekend before last but everything came back negative so they gave him some antibiotics for a few days just to be on the safe side. He's been good since then! He has his days and nights mixed up right now but that's not uncommon. He had to get another echo this past week, the doc said they continue to improve! yay! Also found out that the surgeons think Greyson can get a g-tube in the next couple of weeks! (how he'll get fed) We'll be able to get rid of those tubes on his face so that's exciting! The kidney doctors want him to gain a little more weight before he gets evaluated for a Kidney transplant but our doctor said that his kidney status is stable right now. So were hoping that is still a little ways down the road. So anyway that's whats going on right now! He's still doing good and hanging in there! Thanks for all your thoughts and prayers! Keep em coming! =) 

 He has found his thumb/ hands 

 Sitting up in his physical therapy chair

 Sleepy boy

Doesn't get much sweeter =)