7th floor living

So today was filled with deep suctioning, chest pounding (compression), and sleeping. We also squeezed in a lot of holding and some floor mat playtime. Braden is very weak. He can only hold up his head for short periods of time. He is unable to sit up without assistance and definitely cannot stand. He is like a rag doll. So we have a lot of work to do to get him back to playing and climbing again. Nutrition has him on a new diet plan so we can take him from 23 pounds to 28.5 pounds. This obviously won't happen overnite but we are using his tube to our advantage to get his weight up and hopefully healthy again. It is obvious at this point that if Braden were to get sick again he could not afford additional weight loss. Once he is nice and strong then we can try to wean him again. It's so hard to balance all Braden has to deal with... He is such a good eater and yet because of his crappy lungs and complicated airway he still has to rely on his g-tube. But RSV will still be a threat to him even after having it once. We hope that if or when he gets it again he will not have such an ordeal. Obviously this chain of events is rare. But there are apparently other things RSV can cause that are not so rare. Like pneumonia and pulmonary hypertension. They said another complication but I can't remember what it was called. We were also told croup is something Braden will most likely get often with any upper respiratory infection. At least we know as Braden gets older, bigger and stronger all these illness's won't be any more of a threat than they are to us. But in the mean time we will do our best not to live in fear. To continue to be diligent with Braden's care so that we can give him the best chance of catching up developmentally, letting him eat, drink, play, and get out in the world while protecting him the best we can from illness.

Grayson is changing every day and I hate missing it. Toughest thing other than the stress of Braden's condition is our family being separated. Stephen and I missing each other and each of us seeing one child more than the other. With that said we don't know when we will be home but we are looking forward to being back together again.

We again want to thank everyone for your prayers and appreciate your continued support.

Memorial day...

We are now out of the PCCU. Today was another day of chest pounding and deep suctioning. Braden's chest x-rays looked better today but he is sounding really junky again. His O2 is now on 1 1/2 liters. He was suffering with withdrawals earlier today and I think finally he is going to sleep. He hasn't slept for 48 hours straight. Poor baby. At first they thought he may be suffering from delirium, but then our day shift nurse started leaning towards withdrawals. Later I noticed his pupils were dilated, he was slower to respond, he had poor eye contact and the shakes. I told our nurse and she said that confirms it he is having withdrawals. So now he is in rehab. Lol. Jk... but he is getting a round of drugs to taper so that he can level out and avoid withdrawal. He has also been very emotional. Crying one minute and laughing the next. He is exhausted. As I type he sleeps finally. After a long day he is getting some much needed rest.

So glad I can stay in his room and actually get some sleep too. Hoping for a peaceful night. Hoping soon we will be home and Braden can see his newly decorated room. Daddy and Pop John have worked really hard on painting, hanging all the artwork and installed ceiling fans in both boys rooms.  :-) Thanks again everyone for keeping Braden in your prayers. This has been a rough couple of weeks. Braden is now only 23 pounds and has some serious recovery ahead of him.

Sunday's Update

Braden has had another good day.  He is now completely off of his pain meds as of today.  It may take a few days for it to completely be out of his system, but he is doing good off of them right now.  He is still on 3 liters of oxygen but they will likely start weening that tomorrow. 

Braden was awake most of the day watching Veggietales and visiting with family.  Stephanie was able to hold him some today and he did pretty good.  He is very weak right now.  Physical therapy is going to start working with him to hopefully get his strength back up soon.  They aren't sure how weak he is since he has been in the bed for almost 2 weeks.  He laughed some today and had a big smile on his face a few times.  It is so good to see his smile and his eyes so alert.  You could tell he was getting back to his normal self when he starting watching everything the nurse was doing to him.  He doesn't have the strength to resist yet but he will soon.

They plan on keeping him in the PCCU for a few more days just to monitor him and make sure he is completely better.  Once he is stronger they will likely move him to a normal room without the restrictions in the PCCU.  We are hoping he gets stronger soon but we know it is a process and as excited as we are to get him home, we want to make sure he is completely ready. 

We are going to try and get some good pictures of him over the next several days.  We didn't take any while he was on the vent.  It was the first time he has been vented down his throat since the NICU and its not the easiest thing to see.  We are still asking for you prayers for Braden's continued progress.  We are also praying that the vent tube didn't do any damage to his reconstructed airway.  ENT followed him closely but there is always a risk that the tube affected his airway while he was on the vent.  We again want to thank everyone for their prayers during this ordeal. 

Stephen and Stephanie

Extubated - Hooray!!!

Braden has had a really good day. He was extubated around 3 pm this afternoon. He didn't look too great at first but his blood gases were good. Now he is really looking like himself again and is watching his dvds. He is on 3 liters of O2. He still has to be weaned off his meds. He will most likely go home on several different meds but hopefully it won't be for long. We expect that if all goes as planned tomorrow we should be moved to a regular floor. Less attention and more privacy. Big bonus is being in the same room and having a bathroom and a place to sleep close to Braden. It is so wonderful to be in a better place than 2 weeks ago. We have our boy back. He is still not 100 percent and who knows how much therapy he will need after being in bed so long, but at least he is feeling better and much closer to recovery. We appreciate all the prayers and know we have been blessed. God has taken good care of our little man and we are extremely grateful. Thank you everyone for your continued support and caring so much about our sweet boy.

Friday's Update

Today has been quiet. Braden had many changes last night and a few today. The biggest was getting him off the Nitric oxide which was treating him for pulmonary hypertension. So getting him off the nitric means no more hypertension. Hooray! RT has also cranked him down on his vent settings. They have had 2 CPAP trials. One went well and the second not so much. But that is ok. As one of his ex NICU nurses said "slow and steady wins the race". Braden has definitely been on a steady climb forward and we are thankful.

Braden had a bath last night and tolerated being moved today with little distress. His feeds have been increased to goal and he is tolerating them well. Tonight we were moved to room 5304. Braden is now sharing his nurse which is a good sign of his progress. Braden has been very much awake today and has enjoyed his dvd's. Although you can tell in his little eyes how bad he is feeling. We have gotten into a routine however I think that will be changing soon. Mommy may not be taking advantage of a sleep room now that Braden is awake. He got upset this evening when his daddy and I stepped away to discuss details on decorating his room. Pop John and Stephen have been painting all day getting Braden's room all fixed up for his return home. Grayson is doing well with his RSV. It hasn't slowed him down. He has an off and on runny nose but that's about it. We are thankful for that too.

Thank you again for all of your prayers and we hope tomorrow will bring more good news.

Thursday's Update

Braden had another good day today.  They stopped his paralytic today around noon and Braden hasn't had any issues with it this time.  He has had alot of good coughs to clear his lungs and he has been able to keep his oxygen levels up.  They have continued to lower his oxygen needs as the day has gone on.  Since his heart is stronger again, they have also been able to start his breathing treatments again. 

He began opening his eyes today.  It was so good to see him awake for the first time in about a week.  He is still very drowsy and not totally with it but still, it is good to see his eyes and see him react to your voice.  He knows we are there and has been squeezing our hands. 

Please continue to pray for Braden's progress.  He is making great strides each day but he has a long way to go.  Thank you all again for everything!

Wednesday's Update

Well, there is not much to report tonight.  Braden had a really good day.  The doctors decided not to mess with his settings to help him get his strength up and to see where he is without constant changes.  He rested well and kept his numbers up all day.  The next step will be to ensure Braden's lungs are clear and prepare to get him off the vent.  There is no timetable for this, its just something that will take time.  The effects of RSV can last at least 2 weeks.

Braden did want to thank his friends at Stoner Creek Elementary.  His classmates and teachers sent him a handmade get well soon card and all kinds of ecards.  He can't wait to get back to school and see all of his friends and teachers. 

Braden continues to get lots of ecards and we really appreciate it.  It is great to read the well wishes and encouraging words from all of you.  We ask that you continue to pray for Braden's recovery and for God to continue to guide the physicians in treating Braden's illnesses. 

Stephen and Stephanie

Tuesday's Update

Today was a good day.  Braden rested well all day long and is resting well so far tonight.  Early this afternoon they turned off one of the drugs for his heart and he did just fine.  Just after that, they came in and did the echo.  The echo results came back pretty quick and we were excited to hear the cardiologist say the echo looked great and his heart function was back to normal.  You don't know how good it was to hear those words.  We had been praying for this result and know that so many others had been praying too. Our prayers have been answered.  We can never thank you enough for your prayers during this time.

As good as the news was today, Braden still has a long road back.  He still have to overcome the RSV, pneumonia and the pulmonary hypertension he has developed during the sickness.  Please continue to pray that he will make progress in the coming days. We know that this is going to be a long process.  As bad as we want Braden back home and acting normal, we know that recovering from something like this will take plenty of time.

On a lighter note, Grayson turned 1 today.  Unfortunately it wasn't the ideal situation for little Grayson but I am sure he understands.  We celebrated tonight by playing trucks and watching Deadliest Catch - 2 crazy guys at home alone.

Thank you again for all of your prayers and support.  The number of people who contact us daily letting us know we are on their prayer lists, asking how things are going or just to let us know they are praying for us encourages more than you will ever know.

Tonight's Update

Well, after a crazy morning - luckily Braden had a pretty good afternoon.  They are adjusting his vent settings to help him clear his lungs without having to make him cough.  When he coughs, he is working so hard that he just runs out of energy and his sats start to really drop.  He hasn't had much food at all for almost a week so he doesn't have any reserves to pull from right now. 

He was somewhat aware and able to move this afternoon.  They decided not to increase his paralytic to what it was yesterday so he could begin to wake up some.  They did switch his medicine to something that will allow him some movement but not much.  They increased the dosage tonight to make sure he rests well and we don't have a repeat performance of this morning.  The cardiologist wants to make sure everything is good when they do the echo tomorrow. 

Please continue to pray for Braden and our family.  Today was a rough one.  Again with the NICU mentality, enjoy the good days and make it through the bad ones with prayer and faith.  We are praying for a good echo result showing that Braden's heart has improved and praying for the doctors and nurses to make sure they all make the right decisions in Braden's care.  We also ask that you include Grayson to your prayers - he was diagnosed with RSV today and has been snotty nosed and coughing all day.  Hopefully that is all that it will affect him but we are praying for a quick healing.

Again, we can't thank everyone enough for the support you have given us.  Your prayers and words of encouragement have helped us greatly.  We will make sure and update about the echo as soon as we get information tomorrow.

Not a fun morning

So they decided to take Braden off his paralytic just a bit and Braden basically turned blue shortly after. This generally happens after when Braden coughs which he cannot do while paralyzed. He is also out of reserves so when he starts trying to breathe on his own and function for himself he cannot sustain it. So once he settled out they told us they also suspect Braden has developed a little pulmonary hypertension that may or may not be temporary. He could go home with it. So all you preemie moms take note. When your child is hospitalized during illness new issues can be developed. That's another reason why we need to protect them. I mean look at us. This is the off season and we are in this awful place. I shutter to think about us not sheltering him and having had this happen earlier. When he was smaller and still on oxygen he may not have been able to fight this... Braden also dropped his heart rate this morning and needed more potassium to bring it back up. It took a good bit too as he was very depleted. This is also a tough balancing act when on lasiks and other drugs. You don't want to give too much or too little. Either could cause problems. Braden also had another much less dramatic desat after the other two events. I am trying to type on iPad so please know I can't proof this easily. Earlier when all this started they thought they had put Braden back on his paralytic. However he settled out and the drip wasn't on... Which is a good mistake because he is actually doing good right now and they decided to go ahead and leave him off. The cardiologist have decided to do Braden's heart echo tomorrow so that the results won't be sketchy after today's events. We want a good echo report so they can get Braden off even more drugs. Ok I am tired and hungry. So I need to go... Excuse all errors and I hope all I typed makes sense... Love all of you and keep those prayers going.

Tiny steps but still going forward....

Yesterday RT messed with Braden's ventilator and Braden didn't like it.  So he gave them a little bit of a hard time trying to make him comfortable.  lol  Classic Braden reminding them he's still in charge.  So last nite and today RT left Braden alone so he could rest and start progressing forward again.  As of this morning they said there was little change in Braden's status.  But as the day has progressed they have told us Braden's lungs are sounding much clearer.  They've increased feedings to 30 ml an hour and he is doing well with that and they have cut one of his heart meds in half to see how he'll react.  So far so good and we like changes because if Braden excepts them that means he is progressing forward. 

I am at home tonite because I have an upper respiratory infection. :-(  Fortunately, I was able to get a shot and a zpac and will only be contagious for 24 hours.  I was scared to death I would infect Braden with something else but the Dr.'s said he is on antibiotics and it should not be an issue.  Thank goodness.  Grayson is also sick and we will be taking him to the Pediatrician on Monday.  Not sure if he has what I've got or the RSV.  We just can't catch a break.  But maybe once this is over we will be better.

We can't thank y'all enough for continuing to check up on our family and keeping the prayers going.  Tomorrow Braden will have another echo of his heart.  Please pray for a good report and for him to continue to make a full recovery.  I'm sure Braden and his Daddy will have a good night.  They have definitely enjoyed a good day together and I've gotten some much needed rest and a little Grayson time.

Tonight's Update

Braden has had a pretty good day.  They are still messing with his vent settings from time to time to adjust the pressure and the oxygen.  Other than the RSV surprise this morning, nothing new to report.  We did speak to one of the doctors tonight and she said that they feel Braden is moving in the right direction.  They would hope to start getting him off the vent in the next few days - when the pneumonia and RSV clear his lungs.  Of course this could take some time considering Braden's history. 

We want to thank everyone again for their continued prayers for Braden and our family.  The amount of support we have received is overwhelming.  Braden is on prayer lists all over the place. Please keep him in your thoughts and prayers.  He has a long way to go but we pray he is starting to head in the right direction.

Stephen and Stephanie

RSV surprise

Braden is having a decent morning. All Dr reports have been good. They are happy with the current treatments and Braden is showing some slow but steady progress in the right direction. Today we found out Braden tested positive for RSV. Although the news was at first shocking the cardiologist seemed pleased to find out. RSV is one of the viruses that can cause myocarditis. We do not know with certainty that RSV is the cause but all symptoms and responses to treatment make more sense now. The news makes a stronger case for the theory that this heart issue is likely to be viral myocarditis. Now we must wait out the RSV. Once it has left and the pneumonia has cleared Braden can be weaned off the vent. RSV can last for weeks so we are still very much in waiting.

Cardiologist meeting

There were a few changes today.  Some good news is that Braden's pneumonia is beginning to clear.  If he can get his lungs free of infection then we can move towards getting him off the ventilator.  Which means we could hug and kiss on our sweet man and he could enjoy some of the little things he loves so much.  This is not to say that this is anything more than a goal.  As we are still very much in limbo and things could change in a moment at this still very critical stage. 

Our meeting with the Cardiologist was strictly for information.  As Stephen said earlier we are both struggling with the unknown aspect of this journey.  What we do know is that Braden's heart is not functioning well and that something has caused it.   They have given us two medical terms Myocarditis and Cardiomyopathy.  Myocarditis is often caused by a virus and can be reversed or the heart can go back to normal once the virus is gone.  Currently this is the most likely diagnosis based off Braden's history and the current symptoms his body are displaying.  However, as with most things there is also chance the virus could have permanantly damaged the heart.  It is less likely but still a concern.  If Braden's heart is permanently damaged or if the heart has just for some unknown reason developed the Myocarditis or Cardiomyopathy then depending on the severity can either be treated with drugs or worse case scenario a heart transplant.   So we are still in a very terrifying and fragile position but at least we have something to HOPE and pray for... we obviously want the best outcome and feel most certainly that Braden deserves the best outcome.... So please continue to pray that Braden can fight this virus if that is what it is and that it does not cause permanent damage to his heart.  We know at a moments notice things can change and even though Braden had a good day he can still have a bad one....

They have started to treat Braden as if he has a virus and hopefully we will start seeing improvement in his heart function.  I am home tonite so I can get a decent nights rest and spend time with Grayson.  Stephen is with Braden and they are spending some quality time together.  Hopefully we will all have a peaceful night.  We appreciate everyone so much for their continued support and prayers.  Right now all the love being shown to Braden and our family has given us much needed strength ...

Prayers Please morning update

Braden had a rough night with more spells of lowered oxygen.  They have hooked him up to a few more monitors to check his oxygen.  Stephanie spoke briefly with the cardiologist and asked them to basicly lay everything out on the table - good and bad.  When we were in the NICU we didn't want to know but we feel we have to know what we are up against this time. We meet with them at 11:30 this morning to go over their thoughts and our options with the risks involved.  This has been an extremely emotional morning for our entire family.  We are scared to death right now.  Its just so unfair for Braden.  We try not to think like that but he doesn't deserve any of this.  Please pray for Braden's healing, God to give the doctors the knowledge and direction they need and strength for our family during this difficult time.

Thank you,
Stephen

Tonight's Update

Braden has had a pretty good day.  He had his second Echo and the preliminary results showed that his heart hadn't gotten any bigger and appeared to be functioning a little better.  The cardiologist feels that the medicine is the right track right now - no need to biopsy or cath his heart at this point.  We should know more tomorrow when they come by again.  So, as Stephanie and I said - it wasn't good news but its the first news that wasn't bad in about 4 days.  Again - the NICU mentality.

Stephanie was able to come home for a bit today to see Grayson and try to relax.  Braden and I had a good visit and I kept the Veggietales marathon going.  They don't have him as heavily sedated as yesterday to let him begin to cough and clear his lungs.  He doesn't really open his eyes but you can see him react when you touch and talk to him.  He loves having his hand held - so we did a bunch of that today.

Tonight's visit was not the greatest ever.  I was already emotional when I walked in because he was starting to swell in his face.  It is something we have seen many times before but when he doesn't look exactly like the Braden I'm use to seeing, it really gets me.  Then his oxygen levels starting dropping.  A little over an hour later and it was over thanks to some great work by his nurse and respiratory therapist. They remained calm the entire time even though Stephanie and I were somewhat of a mess.  Braden has so much junk in his chest that they have to try to get it moving so it doesn't set up in his lungs.  Between the vent tube plugging and general junkiness, it was an adventure.  I am happy to report that he was resting well when I left. 

We can't begin to thank everyone for the outpouring of emails, texts, messages and cards for all of us.  It means so much to us knowing that we have that many people praying and caring about Braden.  Please keep the prayers going.  We have a feeling this is going to be a process to get him all straightened out and we need all of the prayers we can get.  Stephanie read each and every e-card that Braden received today (and it was alot).  So, you know if you sent an e-card - Braden heard it.  He says thank you too.

Hopefully we may know more answers tomorrow.  We pray for his lungs to clear and his heart to get stronger.  Also praying that it is something that can be fixed or managed. Thank you all again for everything.

Stephen and Stephanie

Prayers Please

Today took an unexpected turn for the worse.  The doctors were having issues keeping Braden's oxygen levels up so they had to place a vent and sedate him to help him get over the hump with the pneumonia.  They also decided to do an echo cardiogram on his heart and it revealed that there is something wrong with Braden's heart.  It isn't pumping blood the way that it is suppose to.  To say the least it was a devastating shock to Stephanie and me.  This has easily been one of the worst days we have had in years.  Emotions are overwhelming - with fear being at the top of the list. 

We did speak to the cardiologist tonight and they are going to start running tests to hopefully find out what the problem is.  Unfortunately it could be almost anything.  We aren't going to have answers for a few days and even then, we still may not know.  We have just been thrown back into the NICU mindset - a mindset we thought we left years ago.  We have to go into the unknown and start living day by day again. 

We are asking for your prayers for Braden and our family.  We pray that whatever the problem is, it is something that can be corrected or managed. Please pray for Stephanie and me too.  We are almost at our breaking points right now. We will be keeping the blog updated as much as possible and Stephanie posts to facebook throughout the day.  Thank you so much for your prayers during this difficult time.

Stephen and Stephanie

Bummer Pneumonia ...

Yesterday we went straight to the Peds. office in the early AM.  Braden had not been feeling well since Friday evening.  I had been treating drainage with breathing treatments and he for a little while seemed to be getting better.  He ate decent but not nearly what he has been.  Then late Sat. afternoon the drinking stopped and our boy seemed sluggish.  So Sunday was worse and Braden started battling a constant fever of 102.  Not good.  Once we got to the Peds office we did another breathing treatment to find Braden sats were not going up.  They weren't horrible just 90 ish.  But concerning and Dr. W thought it best to take Braden to the Vandy ER for an xray.  So the better part of yesterday was spent at Vandy.  I was by myself and Stephen was on stand by.  I was so pleased with Grayson because he did amazingly well and I was able to handle both the boys with no phone call to Stephen.  Braden wasn't up for anything but sleeping. :-(  Poor little guy. 

Braden has a small amount of pneumonia in one lung.  It's an isolated amount in the lower section so they said it is VIRAL not aspiration related.  That was good news.  I sure would hate for Braden to be robbed of drinking unthickened water.  He loves water.  Last nite was very long... we went from Braden's bed to the glider rocker, to the recliner downstairs and then finally landed on the bean bag in the den.  Briley was happy because she got to sleep with us instead of her being in her kennel. 

Just wanted to give y'all an update.  Braden is at least sitting up this morning.  But coughing really horribly.  He is still pretty pityfull.  Here's a few pics.  In an effort to save time I haven't been spell checking or anything lately.  So if I have mistakes please forgive me. :-)

Sunday - not looking good

Grayson took his yogurt out of the pantry and Briley would like some....

Right after we got home from the ER. :-(

This morning watching Mickey Mouse

Grayson playing well by himself.

What's been up lately....

Well I am a very busy Mommy these days.  I know I have always been but now that Grayson is on the move it's been more challenging.  In a GOOD way though.  He is pretty good about indenpendant play but has his moments of needing his Mommy and when he does look out. lol  We have went from walking to running in a flash.  Seems like it's happened over nite.  We are still not making any new strides towards eating anything other than yogurt but I have been assured by friends that will change in time.  Right now Braden has crashed and will probably take a very long nap.  Grayson is at my feet complaining about Mommy being on the computer. 

Braden had his first Taekwondo class this week and unfortunately I did not take pics.  It's a little early in the process and he doesn't have his uniform yet.  The Mommy have to assist in the moves with their kiddos so I have my hands full while I am there.  Especially since Grayson comes with us.  I will try to get some good pics later as we get into a routine and I have a hand free.  Braden is doing really well in preschool.  He goes from 11 to 1 now so that he doesn't run out of steam.  Braden is off tube feeds again and seems to be doing fine.  His weight is still low 24 lbs 13 ozs but we are ok with that for now.  We really just want him to eat and drink.  He eats well and won't drink anything but his water at present.  His self feeding has grown tremendously.  He will eat graham stiks, ritzs mini's with peanut butter or cheese, several different kinds of cereal, gold fish, and sugar wafers.  It's been so awesome to have a messy car filled with all kinds of snacks. lol  Braden eats and will even drink in the car to and from school.  I can't tell you how happy and how much easier life has been since he is now able to eat on his own.  He is also communicating finally.  He is very good with shaking his head yes and no.  He is even pointing when prompted as well as waving.  Still only when he wants to but his desire to communicate is much greater and we are seeing alot more out of him. :-) 

At Cracker Barrel - Braden loves their grill cheese and apple sauce

Braden's new backpack and lunch box

Our sweet little walker Grayson

Braden biting Mickey's nose. lol He loves Mickey Mouse.

Our lives have been so busy and fun lately.  We go out to eat, to the park, to and from school and even shopping.  I can't tell you how nice it is just to go to the grocery with the boys.  All the things we haven't been able to do we can now.  So that is why our postings have dropped off a little and for that I apologize.  Now I must sleep when I have the opportunity and I go to bed early alot.  lol  The boys are in bed usually by 8 pm.  They get up around 5:30 - 6 am.  At that time I have to get them both dressed and fed several times before taking Braden to therapy or school or both.  We have a very strict schedule from 6 am till after lunch.  Once I pick Braden up from school we either pick up lunch or Braden takes his nap while Grayson is waking up from his.  It's amazing we get anything done in between because after I get Grayson's lunch Braden usually wakes up for his.  Then before you know it Daddy is home.  The days are just flying by and I am dreading next winter.  I can only imagine how much harder it will be on all of us to be able to do next to nothing. :-(  Braden is now tugging at my arm so I must go... :-)  One more thing Braden did well with his vocal cord injection and they will be redoing it for a longer lasting result.  Should last 6-9 months.