Our week...

I find myself struggling to adjust to changes in our routine.  Juggling Braden's feeding schedule with feeding him by mouth and making his early 9 am speech therapy is difficult.   Fortunately, Braden can now handle 8 ozs in a regular bolus now which is amazing.  But he cannot handle being fed and then bolused.  Soooo I have to feed him then wait at least 30 minutes to bolus.  He gets 4 bolus feeds a day and then I try to feed him 2 x's plus a snack.  Between Grayson's feedings and Braden's it's a lot to juggle.  Neither of them are big self feeders.   So this post will be short as we have another 9 am appt. with Speech this morning.  It was weird because Stephen and I decided it was time for Braden to start getting out again and I started getting calls from the school for summer sessions.  I think someone is really looking out for him. :-)  Here are the pics I wanted to share.  More later... oh and also a big thank you to those bringing us dinners.  Wow what a difference it makes to have that one moment in the evening to relax and have something other than fast food... :-)  We really appreciate it.

This week...

This week I played catch up.  Yesterday the boys and I had a fun day of just playing.  They are missing seeing their Daddy but he is finally over his illness and will be home for the weekend.  Yeah!!!  Here are a view videos enjoy. :-)

Quick post

As many of you can imagine we have been really busy.  My Mom came and stayed with us for several days and gave Floy a break.  We are now on our own and doing fairly well.  It's tough getting back into a routine with Braden's schedule being so different.  He is still on numerous tube feedings per day at least for another week.  He is still having restless nites.  He just doesn't sleep as sound as he normally does.  I'm not sure how long it will be before he gets back to his old normal.  Both boys thankfully are taking naps around the same time.  However, the feeding schedule for B does make it harder for me to nap with them.  We have also discovered that Braden does better sleeping thru the nite if we keep him downstairs with us till we go to bed.  We think that this last trip to the hospital really had a negative impact on him.  He is old enough now to express anxiety and fear.  We think he is comfortable with our presence and is not getting up at 2 am trying to find us.  We do believe some of his restlessness during sleep is somewhat anxiety related.  Wondering if he is really home or not.  Where we are etc...

This weekend Stephen realized he was sick again.  Which has us under additional stress.  So much so that Stephen decided to stay down the street at John and Floys.  We are really hoping that Braden and Grayson do not get sick too.  Braden really cannot afford to be ill as he is not fully recovered from his last illnesses.  It's hard not to live in fear all the time.  It's worse though when you are trapped at home yet you can't protect yourself from everything.  I have been staying home too.  Not going to the store or anything unless I have too.  Which obviously I do when Stephen cannot.  Or we just go thru the drive thru.  We do have some nice folks who have offered to bring us some meals which is awesome.  That should help us out for a week or so.  Maybe Stephen can start feeling better and get additional rest without having to leave every nite for dinner. Ok so I need to go as I have more I could say but I need to feed Braden again before Grayson decides he wants to eat again too. :-)

So great to see him smiling again

Braden's new scooter from Grandma. He loves it.

Cookie face

Braden loves his dog and Briley loves her little man.

Braden's weight

Braden is gaining about a pound per week.  He is now 26 lbs 4 ozs according to our home scale. :-)

Weekend fun

So all of us decided to have a little weekend fun.  Nana and I went to the CMA fest evening concerts while Stephen took care of the boys.  We are so thankful to him because we both really needed the break.  We also bought the boys a pool.  We figured it would keep them busy for the next month of being in isolation.  They really enjoyed it although Braden always takes several times of something new before he really loves it.  He did really well for the first time in.  He likes to splash the water while Grayson loves steeling all the toys. :-)  We took the bubble gun and I think Briley likes them more than the boys.  She runs after them and bites them.  It's hilarious.

Braden is continueing to improve daily.  He feels like lead even though I haven't weighed him.  I need to do that this morning.  He is actually snacking a little despite his high calorie tube feeds.  We were pleasantly surprised to see it.  Grayson is actually eating some snacks too.  Which is also impressive although he is very opposed to the sippy cups.  Braden is visibly stronger and more alert.  He has a ton of energy.  He isn't sleeping as much as he use too.  He takes about an hour nap and then we have been having trouble with him sleeping thru the nite.  He goes to bed around 7 pm and then wakes up at 2 in the morning.  If I can get him back to sleep he only stays asleep till 4:30 - 5 am.  I am hoping that will change as it is very rough on me. 

Here are some pics. from the boys pool party.

Exhausted but home

We are sooo thrilled to finally be home.  I am tired and the boys are already in bed.  So we will share some photos and call it a nite.  :-)  Briley and Grayson both had priceless moments of joy seeing Braden and Braden did his little happy dance going out of Vandy and then when he got home.  The pics just don't do justice to how happy the three of them are...

Braden loved his room :-)

Going home

We had a great night last night. A swallow study this morning that showed no new issues. Which is great. We are now just waiting for our discharge papers. Yeah!!! Cannot wait to see the reaction between Braden, Grayson and the dog (Briley).

A very good day

Today has been really good. Braden has been full of energy and has been pulling his pulse ox off all evening. Lol He exceeded expectations during his Physical Therapy session and I am certain he will be back to full mobility by next week. He is going to love being home and I am really hoping we have a great night so we can go home tomorrow. This has been the most emotional and taxing journey. I think Stephen and I both are physically and mentally exhausted. We are so thankful to have our sweet boy back. Thankful for all the prayers and support. It will be so wonderful to have our family together again. Please continue to keep us in your prayers as we never know what will come next. But we sure know that our boy is loved by many and we are looking forward to better days ahead. We are looking forward to getting Braden back outside for the summer and living life again.  Here are a few pics of him eating his cookies from his cookie bouquet!!

Getting close

So today Braden has been completely off oxygen and hasn't needed to be suctioned. So hopefully we will have a good night. Last night Braden wasn't keeping his sats up to 90 and positioning didn't work for him. So we had to call RT to suction him and then he did great for the rest of the night. He was on .25 liters last nite and we will see if he can be off completely tonite. Braden has been very active all day and it is close to 7 pm and he doesn't even look tired. He didn't take a nap but he did sleep until 9 am. Hoping he will go to sleep early so I can get my dinner. :-). I got to spend a little with Grayson today and was so glad to see him. Nana got to spend time with Braden and I think we were both happy to switch off with the boys. Stephen came by tonite and Braden honestly did some signing trying to say something but we are not sure what. :-). Just totally excited to see him trying to communicate. We think he may have been trying to say I love u Daddy because Stephen always signs I love you Braden when leaving. Either way it was super cute and special to see him trying. Hoping we will be off oxygen soon and back together as a family.

Sorry for posting late. The above paragraph was from last night. I sVed as a draft. After typing a draft Dr. Wootten came by and discussed Braden's airway. Everything is fine and we survived with just irritation that needs to have time to go away. Healing from the vent and suctioning could take a while and Dr. W was talking about waiting as long as 3 months before scoping Braden again and doing his vocal cord injection. He said scoping can wait especially since B isn't trying to speak right now. I told him if wenwait then we can do the procedure right before he starts school again like last time. Which is perfect because B is most motivated to speak when he is around other kids. Ok so spelling and grammar aren't being checked this post I am in a hurry. Lastly we had a pretty good night and survived with no oxygen. Braden's stridor is only loud when he is sleeping while elevated behind his head. So now that his congestion is minimal we payed him flat and he did a lot better. Thankful for it because he sleeps at home flat. So we may be going home today or tomorrow. Sorry no pics. We will get more later.

Love to everyone and we will keep you posted.

Monday's report

Today has went really well. Braden is now on .25 liters of O2. Which he handled very well even during his nap. We also took him off completely for a bit and he did fine up until he started trying to get some mucus out and couldn't. So we went ahead and had the RT do his CPT treatment (what I call chest pounding) and deep suctioning. This was the only one today. So yeah!!! We have reduced treatment. She got a good bit out and hopefully that will make his night go well. ENT had respiratory set him up with extra humidity and that will hopefully help with his strider. At home we crank up the frog humidifier and that seems to work well in his room, but here they have to make him wear a mask. If it gets him completely off O2 it will be great. Thursday will be the last day of his Ativan and methadone taper. So we are hoping all this means we may go home on Friday.

Braden did really well with physical therapy today and can stand up now with minimum support. He is very active but also sleeps a lot. Today after working so hard he took a 3 hour nap. He only got up because I made him. I wanted him to sleep good tonite and have a nice visit with his Daddy. Tomorrow Nana is coming and I am going to meet her at the car so she can come up and visit with Braden while I visit Grayson. Speaking of Grayson he had his one year check up today. He is 28.75 inches and 19 lbs 4 ozs. Barely on the growth chart. Pretty funny poor boys are short because of their Momma. :-)

Sunday

Today was really good. Braden just gets better and better each day. He actually got to come off his O2 for a short while this afternoon. One of his biggest issues right now is his strider. He is so loud (sound a lot like snoring) when he sleeps. Sometime he does it when he is awake but rarely. Anyway the strider issue causes him to be on oxygen when sleeping in addition to his lungs still having mucus. Braden did a lot today. He got a cookie bouquet as a gift and absolutely loves it. He obviously isn't very hungry since we are using the tube so much but he actually took a bite of a cookie. Spit it out but still came really close to eating it. I will have to start making food that looks like fun - like pancakes with smiley faces. Seems to make sense he would like that since he liked the animal cookies.

I don't know who made this happen but Respiratory came early the past two nights. Thank you thank you whoever made this happen. I will actually get to sleep by 10 tonight.  This should give me 8 hours instead of my usual 4 to 6. No one can really function for very long on that...

Thank you to Stephen because he got Carrabas for my dinner. Braden took his nap during Daddy's visit tonite so they didn't get to spend any time together and that is a bummer.
No real changes right now just waiting till Braden tells us he is over it.

Thank you everyone for your prayers and continued support. Goodnight all....

Switching it up

So today Stephen came to visit with Braden while I got to see our little man Grayson. We all had a great time and it was so nice to go home for a bit. Grayson played and got in the laundry basket of toys. It's something his been doing since I have been at Vandy. I was happy that he did it during our visit. :-). Briley was very insistant I play with her and not Grayson. Lol So Grayson and I played with her together. Stephen and Braden had a fun time playing games and watching DVD's. 
Our Dr. Report for today was interesting. Apparently they did see a few small issues that need to be resolved with Braden's heart. The left side heart muscle is a little thick but is not effecting heart function and should resolve in time. The other part had a pretty long explanation but end result is similar... Both things are not a big deal and not surprising for all he has been through... I look at it like his kidney's. He followed up with Urology for forever it seemed about that but no treatment was necessary. Just kept a close eye on it and made sure it was resolved in time and it was. Hopefully after a follow up visit all will be completely back to normal. Again his heart function is back to normal. I also asked how much longer do they think we will be here. They said could be another week and a half but could be sooner. Right now Braden is doing great. He is down to .25 liters during the day and .50 at nite. We are going to try weaning him back down during this evening but last nite he was at .50 so we shall see....Braden is getting more and more active and tries really hard to stand and walk. The big news of the day is Braden is now back to 25 lbs. Yahoo!!!

Friday

Well we have had a pretty average day. Braden had his echo and we didn't hear anything so we have to assume all is good. I mean after all it is now officially the weekend so if it showed anything alarming we would have been told by now. Braden was having sat issues earlier after a suctioning but is now miraculously healed thanks to a visit from Nana. Seriously I am not joking this kid is laying flat and sats are 100. He hasn't been able to lay flat for weeks without dropping. Not to mention he thought he could just get up and walk across the room by himself. I had to help him but he sure did try hard and did it with little help. He just had to get the remote so he and Nana could watch some Mickey Mouse together. Even little kids need a little normal sometimes. This was her first visit this week that Braden wasnt already down sleeping for the night.

The only frustration we are having this evening is waiting on Respiratory. It is close to 11 once again and they were scheduled for 9:30 - 10 which is killing me because I need to feed Braden and get to sleep. I am so tired and you just can't get much rest around here. I can't go home because then I worry all night. Tomorrow I finally get to visit with Grayson. I haven't seen him all week because I never thought we would still be here. :-(. Well I gotta cut this short Braden has decided to grind his teeth and I gotta stop him. It's like nails on a chalkboard.

Today's activities

Today we started regular gravity feed boluses with Braden. He is doing just fine and not having any digestion issues. His Methadone and Ativan taper is now every 12 hours instead of every 8. We had lots of floor time today which absolutely exhausts Braden. He is showing improvement and it continues to be slow and steady. His chest compressions with the RT's is down to just 3 times a day. His O2 remains on 3/4 liter and his sats vary from 90 to 100 during the day and 85 to 95 at night. Anything above 90 is acceptable so dipping below 90 sets off his alarms. This is lovely now that Braden is slouching in bed and rubbing his nose so his O's slip off his nostrils. Lol. Makes for a long night for his Mommy. I get to bed around midnight because of his feeding schedule and RT has to coordinate. We can't have a full belly if they plan to suction and make him gag. :-(. I also have to shower at night because it's the only time traffic slows down in our room. Then I have to hope Braden goes back to sleep. Then the parade starts bright and early around here at 6 am. So 6 hours of interrupted sleep means lots of iced coffees and cokes to get me through our day. I try to only leave Braden for short periods of time to grab some food and I always eat in our room.

In case anyone wonders, Stephen and I have always worked together on who does what when Braden is in the hospital. I am the one that can't sleep at home during a crisis with our children. Stephen can't sleep if he is at the hospital. After all Stephen and I decided three years ago that he would work so that I didn't have to. So that I could stay with our kids and take the best care of Braden. Each of us has to do our own thing to satisfy our feelings of helplessness. But in the end we do a lot for each other. We talk a lot on the phone and text to check on each other. Stephen visits as often as possible and makes sure Grayson has everything he needs. At night Grayson is all about Daddy and if we have to learn something from all of this it's when Mommy is away Daddy makes his best impression with our boys. When I was in the hospital having Grayson, Braden had a  bonding experience with his
Daddy. Now that Braden and I are at Vandy, Grayson has had that same bonding with his Daddy. I love it because now when Stephen comes home from work they will both be running to him. That gives Mommy a big break. :-).

Therapy

Today has been good. Braden has had improvement in his mobility. Much to my surprise he was willing to stand with assistance today. He even attempted to take a few steps. His breathing is still rattled but improved. He got a bath, clean bedding and pj's. He had physical therapy and bolus feeds. Tomorrow we will do much of the same. Each day we see continued improvement and for that we are thankful. Today's activity will help his lungs and heart. It will build up his stamina too. Right now 10 mins of work is all he can take...we work several times a day. We brought up toys as motivators and once we are home Briley and Grayson will be the motivators. Lol. I really can't wait to see it. Well I need to go as I think Braden needs suctioning and I have to call Respiratory Therapy. Oh how I hate to wake him but he needs to be able to breathe.