Owen's day looked like this.
I don't know if it's the increased Captopril (heart meds), but this little guy is just plain miserable. He pukes, cries, sweats, and it's not easy to make him happy. He is constantly needing snuggled and held. He cooperated with Physical Therapy for about 15 minutes before he was exhausted. He has no symptoms of being sick. By sick I mean a normal 17 month old sickness. I'm going to back down on his Captopril until tomorrow and see if he feels better. If not, I'll make the dreaded call to cardiology.On a HAPPY note... Owen did a little walking while leaning against his walker and having Jessica (his PT) support him. He's learning to bear weight in his legs and we are so proud of him. It takes a lot of energy from him to stand up like that for just 15 seconds. He breaths as if he completed a marathon, turns blue and has to lay down for a few minutes to regain his energy afterwards. He continues to try and he always claps for himself when he's done. Days like today, he breaks down and cries afterwards. He's just plain worn out.
Tomorrow will be a better day. Until then. We rest.
24 comments:
Oh, that sweet baby!! Those tears break my heart. I pray he will feel better soon.
What a sad picture. I am so sorry it was a rough day. I can't imagine what you go through daily. I pray that he will feel better tomorrow.
What a great spirit that even when he's so tired, he can clap for himself. Tough guy!
Hope tomorrow is much better.
I just want to scoop him up and do everything for the little guy so that he never has to feel any pain.
I pray he will feel better soon and tomorrow will be a better day for him and for you.
Oh my, that just brings tears to my eyes to see that sweet little boy crying. PTL on him putting some weight on his legs - we need a picture! I hope going down on the captopril dose makes him feel a lot better. Wish I could sit and rock him and snuggle.
Denise
Poor, sweet Owen. I can only imagine how badly he must feel since his heart is working so hard. I want to clap loudly for Owen & his major accomplishment. His determination is so admirable. I pray that he feels much better tomorrow!
This breaks my heart...Grammas are supposed to make things better. Praying it is the meds...and tomorrow is better.
Helpless Gramma Vicki
That sweet boy...his sad faces make me want to cry just like his smiles crack me up. I just think he is something really special. He has a way of touching people who have never met him. I hope he feels better tomorrow.
Bless his sweet little heart. My prayers are with him tonight~
Oh, what a sweetheart! I'm so sorry he is feeling down...extra down...today. He is such a little fighter. I am praying for him each and everyday.
Clap! Clap! Clap, Owen! I'm so proud of you! Way to go on the steps!
Love to you all, Kerri
Poor baby! I'm so sorry :(
Praying for you guys...
Poor Sweetie---I hope and pray that he has a better day tomorrow.
Those alligator tears are incredible! I sure hope that tomorrow brings a better day!
Hoping the 117 degree heat did not dehydrate and give a headache while taking that potent Captopril.:( The sweating and nausea makes me wonder.
Praying for quick recovery for this sweet little guy. Maybe some Pedialite or sips of gatorade would help along with the healing sleep.
Hope tomorrow brings better news and happy faces again!
Poor baby! Lily was on Captopril for awhile when she was a baby too, although I don't recall any negative response to it. Her negative issues were due more to the sodium and potassium (especially the latter) that she was on BECAUSE of the Captopril. HUGS! I sure hope Owen is feeling better soon!! He's such a trouper.
That picture is sooooo sad and just breaks my heart! I can't wait for the day that he has his new heart and doesn't have to feel tired and pukey anymore! Praying for your sweet boy!
Dear Simmons Family,
I came across your blog by accident while googling one thing and link to you from another site. I noticed the comment about heart disease and followed up. My family has been recently involved with a number of babies and illness has stuck us and close friends as well. My wife’s brother just recently welcomed a baby boy into their home 8 weeks ago. Unfortunately he was born with Schones Syndrome and too has been through two open hear surgeries and will need to suffer two more to correct the issue. At 8 weeks his entire life has been spend in a hospital. We are hoping for his return to home in the next couple of weeks.
For us we were blessed two years ago with our first son. Adding to our wonderful to daughters. After birth we was rushed to a Children’s hospital and we later found out he was born with Hirschsprungs disease. While correctable we lived with a colostomy for the next year as his large intestine recovered. Today he is a healthy two year old boy that loves sports and running around. We are so thankful.
Why do I tell you this? Because I think I truly understand the pain you go through on a daily basis. While yours is focused in a different direction on a different scale I understand the pain you feel as you watch your child suffer. Either way I pray the Lord continues to bless both your family and your son with a speedy recovery and a healthy heart donor. Keep the faith and God speed.
Poor little guy, he looks so sad. Your guys are in my prayers.
Oh, I hope he is feeling better today!! Poor guy, he looks so sad!
Little Owen is my hero. He doesn't feel right but still he push forward. Praying for him to get better.
How is Owen today? I have checked back many times hoping for an update and to see his smiling face. Maybe he is better and just needed to be held all day today.
Denise
Andrea,
I love to read your blog because of your happy outlook on life. You are in love with life and that is a lesson I need to learn. Maybe if I read your blog enough, I will catch on.
Glad to hear that Owen's lungs are nothing less that PERFECT.
Hope all coantinues to go well.
Grandma Ann (Alexander Douglas Stewart-HLHS-Transplant-2008)
Kristi said it all - that sweet face can make me smile or just break my heart. I hope Little Owen feels better today. I just want to scoop him up and do anything I can to bring a smile to his face. (((hugs)))
Christine in Atlanta
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