Sunday Singing

Ryan had a very good night with Mommy and Daddy at his side.

He gratefully disliked that he had to miss Fifth Sunday Singing but he did his part for music that morning.

He LOVES his Piano!!

He LOVED showing off this morning!!!

Dr. M says Ryan has been doing great since they’ve been feeding his gut. Dr. M has come in the last two days and has turned his oxygen off while visiting with our family.

Seeing as how Ryan still has had his cannula in his nose his oxygen hasn’t fallen below 95%!!!

Dr. M said today that he believes that he should be able to get Ryan off of the oxygen!

It will just take some time and also take time to see if getting the lungs better will help him have better results on his swallow test.

Dr. M also gave us full permission to take Ryan out of
his room for a walk today!!

He got extremely excited when we started onto the elevator!

We visited the fishes, the big train, and then he visited the cafeteria for the first time.

Ryan fell asleep while we were eating breakfast. I don’t know if it was the stress or the exhaustion but that meal was one of the best eggs/biscuits I’ve ever had.

It was just very nice to have our family together away from his hospital room at least for a few minutes.

Gammy and Sissy brought us some of the BEST Fifth
Sunday Pot Luck!!

  I don’t have a clue how to thank everyone for their thoughts and prayers but we appreciate them so very much!!

In Honor

Whew! What a night thankfully Ryan had a much better night than his Mommy did! Apparently when a medication states not to stop abruptly it means don’t even think that you can skip one night’s dose and take it in the morning. I had crazy literal nightmare all night long. Thankfully my mom was the only one who heard me yelling in my sleep.

Today is a very special day. . . A year ago today God took all my Daddy’s pain away. I wrote today’s post before Ryan re-entered the hospital. So enjoy the pictures of our little Edward as I remember my Daddy Edward. . . .

Today’s post is in Honor and Memory of my Father
Edward Wayne Rundel.

Daddy today is your one year birthday of your entrance in heaven for us on earth. I can’t even imagine who time has flown in Heaven time. We miss you terribly but know that you will never feel pain. You are playing, singing (yes now I believe you CAN carry a tune in a bucket), and dancing in heaven.

I can’t lie and say that I’ve not missed you terribly! We’ve gone through some of the toughest times without you here over the last year. It been insanely difficult but we know that you instilled in us the courage and will to overcome all of our obstacles. God’s timing is everything. Through the loss of our son you inadvertently guided us through your own passing. I remember you telling to never worry about the money used for your last memory/time with a love one. You really did walk us through your passing. I know you wouldn’t take any credit for it but you did help us with your words you instilled in us through the passing of our son.

This last month has been especially hard for me Daddy. I’ve had to make one of the most difficult decisions of my life. Even though you’re not physically here I’ve heard your voice in my thoughts several times. You’ve encouraged and guided me through several tough decisions and this was no different. You’ve always been one of my biggest supporters throughout my college carrier and now my professional career. We used to joke and one-up each other with every raise we received. I ultimately ‘won’ but I know you wouldn’t have had it any other way! The only thing I wish is that I could have been hugged and kissed on the cheek one last time.

I know you are exceptionally proud. Two of my all-time dreams have come true this year. Your grandson at times is a complete pill just like you would have him!!! He is of course your name sake and very rightfully so!!! As of Monday I will get the opportunity to care for cardiovascular patients. Granted God had a much younger patient in mind but I can’t be more excited. I just wish I could share my excitement with you!

I have to thank you soo very much for introducing us to our new spiritual family. They have been infallible resources, comforters, teachers, and friends! We couldn’t have come as far as we have without our Kentucky MBC family.

We miss you terrible but we are going to try do to our best to celebrate your earthly one year entrance into heaven. I can’t even imagine the things you and Jesus are teaching our son Jackson. I know one day we will see you all again.

I love you Daddy!!

Therapies Here I Come!!

Dr. M has been wonderful with Ryan and today he was
able to start all his therapies again

(so not to get behind or lose what skills we have gained).

Mrs. Jenn came by and was able to watch him with his therapy!!! We all love Mr. Jenn!! She has been such a prayer warrior and great friend of family through all our ups and downs of the past year!!

Ryan has met his current OT goals with Mr. D and the hospital has started helping him work to meet his next set of goals. This is a very BIG goal!! He is now working toward sitting both assisted and unassisted.

He is also working on his Motor/Mouth skills.

He is still having a very hard time with understanding why his tummy is feeling yucky and why he is starting to feel yucky even though he was for all reasonable purposes healthy.

I had a very nice and growling send off from work. Soo after 12 hours, 5 pts, 2 with withdraw/comfort care orderes, and 1 death later I was able to clock out and start my new chapter of my life!! I’m very thankful for the opportunity to grow and learn from my prior employee. Just pray some very important things change. I can’t tell you how much I’ve hated leaving the people I’ve worked with but my family ultimately comes first.

Little Comfots of Home

Gammy took care of our sweet boy today for Mommy. I’m in the home stretch of my last two weeks at my current job! I wish I could say that this next to last day was good but it was par for the course it stunk majorly!  

Thankfully I have this little gem to come ‘home’ to!!!

I gathered up a ‘few’ of his things from home to hopefully help make his stay at the hospital a bit better.

I got to his room just in time to see his last treatment and then rock and tuck him into bed!!

Ryan had a fairly uneventful night. Thankfully he had just enough food in his tummy that he slept through most of the night (that is after I pleaded with the nurse to please NOT wake him up during the night! Yes I know that means he will soil his diaper but sleeping through the night is the ONLY thing he does well and does NOT take well to being woke up!)His CO2 levels came down drastically after stopping his bottle feeds. Unfortunately this means there is most likely an issue somewhere with his feeding.

We were very blessed today that Dr. M was able to secure us a spot in radiology for a swallow test!!

I’m used to swallow test I’ve been with many post stroke/vented patients so thankfully I was able to tell a good bit of what was going on, on the screne.  

Fortunately, But Unfortunately we did see some aspiration on the X-rays. He wasn’t aspirating all the time but just enough to make it unsafe for him to bottle feed.

He did do well however on the baby food. They didn’t see any aspiration with the food but again there is that but word, he isn’t coordinated enough yet to solely take his calories from baby food.

Dr. M came by shortly after Ryan’s XRay tests and told us that this problem isn’t uncommon in micro preemies. After reviewing our history again with the added knowledge Ryan has been most likely aspirating since the NICU at Baptist. He said the first indication would have been when Ryan was off of his oxygen for a complete month then all of a sudden had to go back on his oxygen after starting a higher frequency and amount of oral feeds.

This is honestly discouraging but it was a truth we learned even while in NICU at Baptist. They are amazing at keeping our little ones alive and thriving but are not the best when it comes to being as diligiant in the step down units with their feeds.

Dr. M says that he wants to take the next few days to get to know Ryan and see his trends. Ryan will still be fed through the TPT tube and his oxygen will remain the same for now.

We were very blessed to have a room full of visitors today.

Ryan LOVED sleeping in his Daddy’s arms.

No day would be complete without a good
bit of spoiling by his Sissy!

Its hard when your little one is sick but I dare to say it is even harder when your little one is otherwise ok and you stick him in the hospital and make him feel crumy in order to figure out hotw to make him feel better.

This is how we’ve spent the majority of our day. Ryan curled up in Mommy’s arms rocking, walking, singing, and attempting anything we can to keep him calm/comfortable. He is receiving his feedings through a tube that puts the food just below his tummy.

The worst part is that his poor tummy is feeling hungry and Ry doesn’t understand why his tummy ‘hursts’ so bad and Mommy nor anyone else will help make it stop (not to mention poor baby is teething feverishly).

Here We Go....Again!

Today was originally supposed to be our ‘normal’ 8 Month Stats Post but as usual we were thrown another curve ball!

Today was Ryan’s Monthly Check up with our neonatologist. Before we headed up to Little Rock we Met Mr. Scott for some pasta!!

While being our little socialight he also helped pick out a bridal shower cake for a very good friend!

We were very lucky to have sissy join us on our Dr. appointment.!

She was nice enough (or should I say she demanded ot hold him)

and therefore attempted to feed him!

We thought our day was pretty normal. Gammy helped get Ryan nake for his vitals. He hadn’t gained from his last weight taken around a week before but he hadn’t lost any weight either!

We visited with all of our ‘consult’ team  while waiting on routiene blood work before Dr. L slowly peeked in from behind the door with a very familiar but unwanted look on his face!

Ryan’s CO2 was 78. His normally runs high but is around 55-60. His pH was ok but in order to make up for his high acidity of his CO2 of 78 his HCO3 was also high (HCO3 is a base) in order to make up for his high acid level.. Unfortunately this bit of info meant that Ryan was destined for another stay in the Hospital!

Thankfully Dr. L didn’t feel that Ryan needed an ICU bed! Dr. L kept saying that this was like the last time he saw him there was absolutely no indication by looking at our child that his Blood Gasses were as high as they were. We were very blessed that the team found Ryan a private room for Little Man. This meant that no matter how long his stay two of us would be able to spend the night and take turns caring for our son!

For the most part the rest of the night was spent walking back and forth from his room to Radiology. He had a routine chest X-ray (I was able to look at the image after it was taken and thankfully his lungs were completely clear!). Followed by an abdominal Cray to check his TPT tube placement and also to make sure his tummy looked ok. Unfortunately his TPT tube had coiled back on itself and the nurses had to adjust it’s placement and back to Radiology we went!

Daddy dropped by after work and accompanied us to our XRays. Gammy was nice enough to run to the store to pick up a few necessities and stayed with Ryan for the night so that I could get a little bit of rest. (I had actually been to the Dr. the day before for a bad Sinus infection)

The plan so far is for Ryan to be on feeding rest. He will be fed through the tube tonight and hopefully have a swallow study in the morning. All of his additional labs came back normal so now they are just trying to figure out what’s wrong with his CO2.