Cardio Update

 
Over the last few days and weeks, Davis has come SOOOOO far!  Surgery day was over a month ago now, and we have been home for three and half weeks.  He truly is almost back to normal, it's CRAZY!!!

His sleep schedule is right where it should be (back to sleeping through the night around 11 hours - yay!) and his appetite is AWESOME!  His contentment is back, and so is my happy boy!  I'd have to say his biggest complaint now is his teething - typical baby stuff. :)  He still isn't very active, but he has rolled over onto his tummy on his own twice.  It won't be long until he's back to rolling all over the place.  We still won't be able to lift him under his arms for awhile, but we can begin working on head support and trunk control again.  He may have a physical therapy evaluation in a few weeks through TEIS since the surgery has set him back some regarding his physical development.

Today we had a cardiologist appointment.  The echocardiogram showed his heart to be smaller, which is great!  Pre-surgery, his heart was enlarged (and still is) due to having to work harder, and seeing this decrease in size is just what we want.  He still has some fluid in his lungs, and his breathing is still a little rapid.  Davis will have an ultrasound on his neck next week to check the blood clot - hopefully it is gone and we can stop the blood-thinning injections.

But I think what I am most proud of is he has finally reached the 15 pound mark - 15 pounds 1 ounce today!!!!  He's been in the high 14's for weeks on end, so I was happy for him to reach this milestone.  Also, you can see from the pictures below he has healed quite nicely.

Silly guy!  He loves bath time!

The good report means that we can actually show our faces in public again!  It'll be nice to get out and about with little man.  Our first big outing will be the Buddy Walk on Saturday; we are excited to show our support for Davis and others with Down Syndrome (click here to read about the Buddy Walk).  Our only issue with getting out is the flu is already spreading, and Davis really needs a flu shot to protect him from getting very ill at this point; but he can't receive the shot until he gets off the injections.  I am not a huge fan of the flu shot myself, but I guess I'll be getting my dose this week to help protect him.

It's mind-boggling to look at these pictures and then go back through the pictures on the blog over the last month and see how far he has come.  Davis is an absolutely incredible creature!  And look at those roly-poly arms and happy face - too much cuteness for this mama to handle!

Happy Days

Wow, what a great past few days for little Davis!  He is eating and sleeping well; he is still fairly inactive (which is good; he's still healing!), and he is full of smiles.  He is quite clingy and still fusses at times in which he wouldn't have prior to surgery, but I would too if I were him!  Between how he appears physically and how he is behaving, I'd say he is doing quite well for less than three weeks out from heart surgery!

Besides a little update, I want to share with you some information about Down Syndrome Awareness Month, which is October.  Buddy Walks are being held all over the country in order to raise awareness and promote acceptance of people with Down Syndrome.  The walks are the main fundraisers for local chapters of the National Down Syndrome Society.  October 13th is Davis's first Buddy Walk, and I am so excited!  We have already had several family members and friends join our team, which is called "Little D and Company," and have also raised $150 of our $500 goal so far for the Chattanooga Down Syndrome Society.

Please visit our fundraising page at http://www.crowdrise.com/LittleDandCompany if you would like to make a donation in honor of Davis.  If you would like to walk with us, visit https://www.keysecure.com/chattanoogadownsyndrome.org/index.html to register.  Note:  if you want a t-shirt, you must register by Friday the 28th at 5:00, and remember to put Little D and Company as the team name.  This is our first opportunity to publicly show our support for Davis and other members of the community with Down Syndrome; it's going to be a fun event for all.  A big thank you to those who have already donated or registered!

Well, Davis doesn't go back for a doctor's appointment until October 8th and/or 9th.  Let's hope the next week and a half continue to yield improvements for Davis.  Hopefully, we will be cleared to resume normal activities!  Thank you all so much for the continued thoughts and prayers. :)

2 weeks and 2 days

Well, it's been two weeks and two days since Davis had open heart surgery.  Considering the circumstances, I'd say he is doing extremely well!

Our challenges this week have been with Davis's eating and sleeping.  His appetite is not what it used to be, and we had concerns that he wasn't getting enough nutrition and hydration (his doctor says he is fine and eating will pick up).  Also, he is having trouble taking naps during the day, making for a very challenging day and especially evening.  However, each day seems to get better; in fact, yesterday was a TREMENDOUS day.  He ate a LOT and got in two good naps with some diligent coaxing by me.  We're not having too much trouble with night-time sleep besides occasional, brief crying episodes when he wakes.

All this has been disappointing because Davis has always been an excellent eater, has always slept through the night since he was one month old without any trouble at all, and has consistently had such a pleasant, content demeanor.  So in a way, I feel like I don't have my same little boy anymore.  But since each day is improving, I feel that he will be back to himself in a few weeks.

Physically, he seems to be doing great.  His wounds look good, and each day he seems to get stronger.  I took a video scan of his body today, so that I can compare how everything looks days and weeks from now; I thought about posting it but then decided that no one really wants to see his yucky chest tube wound.  I will get a picture of his incision soon though and post it - I'm amazed at how wonderfully it has healed!  Additionally, I don't have to worry about Davis rolling across the room...yet.  I'm sure he'll get there soon, he was rolling all over the place prior to surgery.

Yesterday, Davis turned 7 months old - unbelievable!!!  Before you know it, he'll be graduating high school. ;)  Is that the cutest smiley face or what?

Back at Home

I know...just because we are home with Little D does not mean I can stop posting about his progress.  I am reminded of this fact by the messages I have received from fans of Davis asking about him (which I don't mind of course...thank you for your concern!).  I promise I will continue to keep up this blog; it's just been busy around here!  At the hospital, we had lots of nurses and doctors to help us...here, it's just us!

Poor little Davis is not himself right now.  Those of you that know Davis know that he just may be the most pleasant, chill baby ever.  But he has not been a happy camper - he just doesn't feel good!  I suspect that not only does he continue to have pain, but he is a bit traumatized from his experience.  I would be too; his whole world was turned upside down!  I think it's going to take awhile to get him back to being comfortable, physically and emotionally.

Our new situation is hard on me because I'm already tired and stressed about caring for him the best I can (I am slowly building confidence with the medicines and injections), and he is requiring more attention to help him be comfortable, not that I mind.  Gramma came for a couple days to help, and now DD is here.  Not only that, we have had our kitchen stocked by Matt's parents as well as our best friends in the world!!  When we returned home from Nashville, we were surprised with "Welcome Home Davis" signs and lots of food and goodies to keep us fed for several days.  Sneaky friends!!  We love you!

Our cardiologist visit yesterday did not result in any new findings.  Dr. Johnson pretty much confirmed what we already knew.  He will closely watch the right leaky valve as well as the blood clot.  He doesn't think that Davis's lung is collapsed at all but sees some fluid in and around the right lung on the x-ray.  I am surprised Davis isn't glowing from all the radiation from the numerous x-rays he has received so far in his lifetime.  I am not much for modern medicine for the majority of human illnesses, but I definitely appreciate it for helping with the issues we face with Davis's heart.  Because of such medical advances, Davis will most likely be able to live a long, happy life!  All the tests and medicines make me cringe, but it's necessary in his case.  And I LOVE Dr. Johnson and know Davis is in good hands.

For those of you not on facebook, here is the picture from Davis's last day at the hospital - cute little buddy!  I'm too lazy to take and post more pictures today, but don't you worry, I will get some good ones soon (it's almost time for 7-month chair/bear photo!)...I just wanted to get this information out while I had the chance because I know so many of you care and want to pray for specific concerns.

Heading home

We are heading home from the hospital! I cannot believe how quickly my little man has healed! He is full of smiles today and happy to be out of that hospital. It felt so good to be able to hold my baby without all the wires and tubes and dress him in his own clothes. While Matt and I are thrilled to be bringing him home, our journey still continues...

Yesterday Davis had a full echocardiogram completed to look closely at his heart post-operatively. The most intricate part of Davis's surgery was making two valves out of one. The echo showed that the left valve, which is the most important valve, looks perfect - this is wonderful news! But the right valve has moderate to severe leakage. This is disappointing to hear that the repair was not perfect. It's quite possible that the valve will thicken with scar tissue over time and will not cause problems down the road. At this point, another surgery is not recommended. It's simply something that will have to be monitored.

Additionally, Davis's chest x-ray this morning showed more fluid on his right side. I'm frustrated because over the entire week we've had this problem with his right side, and honestly I dont think the doctors know exactly if it truly is fluid, or a partially collapsed lung, or both; they said it's difficult to tell. So we are treating for both and we'll see the cardiologist on Monday.

The next few days and weeks will continue to present challenges. I am most nervous about administering his medications correctly, particularly his injection. Plus I am so sleep-deprived I am worried about making a mistake; my mental function is extremely poor right now!

I don't mean to cause this post to sound negative; I just want everyone to know about the present concerns. There is still so much about which to feel positive! Davis is alive, his heart is better than it was, he'll continue to heal and feel better, and all of this really is a miracle!  And the biggest miracle of all is Davis - he is my hero.

I took some very cute pictures of Davis today, but because I am not technologically inclined, I can't figure out how to get them to the blog using my iPhone. I'll have to do a special picture post later.

I can't thank you all enough for all the support and encouragement!

Day 8 - End In Sight

It's Friday - one week ago at this very moment, my little baby was having a life-saving operation.  And look at him now!  It's just incredible.

So here's Davis's latest update:
His right lung is only partially collapsed, and it's better today than yesterday.  It's not a huge concern right now and should get better with a respiratory treatment called CPPD, which he actually likes, and more movement on his part.  He is in some pain today when he moves and coughs, but we are treating the pain with Tylenol and oxycodone.  His remaining chest tube will be removed shortly, along with his pacer wires; this should result in less pain and easier mobility - yay!!  Did you notice looking at the picture that he is off his oxygen? :)

Davis is eating well today!!  -almost back to normal.  And I was able to get two half-smiles out of him today, despite his pain.

We are actually talking about discharge tomorrow.  If not tomorrow, then Sunday.  Can you believe it?  We still have to get that lung functioning better, but there is not much doubt about its improvement.  There is always the possibility of another setback.  But we are planning on discharge during the weekend and tying up our loose ends today since it may be our last week day here.  CRAZY!!!!!!!!

Almost back to his old self!

Day 7

Hi, Everyone.
It's Patsy here, AKA Gramma.  It is pretty late on Thursday night, and Kari has finally been convinced to try to get some sleep.  She and Matt got almost no sleep at all last night.  Davis was uncomfortable through the night.  Right now, Matt has had a little nap and is feeding Davis.
It is great to see Davis eating.  I have not gotten a big smile out of him yet, but I can tell it is coming.  He is starting to communicate with his eyes, his signs, and some cooing. 
It has just been a difficult 24 hours with his comfort.  He hurts but can't really tell us where.  A new development is his collapsed lung on the right side. 
So Kari asked me to do this blog update.  Short and simple.  But she knows that so many are looking for the updates each day.  I plan to do another guest post when things settle down that will be more reflective in nature. Sorry no pictures this time.  Thank you again for the tremendous support and all of the prayers.
Good night all.