Do you ever get past a constant state of concern as a heart mommy???
For the last 3 1/2 years, so far my answer would be "no". With my other 4 children I was and am always concerned for their well being, happiness, health, good behavior, education - academic and spiritual, etc.... and also us as parents being a good example for them. But, with Mason it is all that plus the constant concern of looking for symptoms that something is not right with his heart (both his old half of heart that he was able to live with for 2 1/2 years, and now his new transplanted heart). The constant concern that I might wake up one day and find him not breathing. The constant concern that I may have drawn up his meds wrong (and there are still soooo many), where the slightest mistake could cause a huge problem. The constant concern that I'm not protecting him well enough from all the bad germs that come our way because of his immune suppresion. And with that being said, the constant concern and wonder, "is he living the most normal life possible for him?'
Presently my biggest concern is: that Mason is struggling getting over his pneumonia or could it really be that he is experiencing the beginning symptoms of rejection? Mason is still needing extra O2's at night (1/2 a liter) or he frequently drops to the low 80's without it, when he should be in the mid to high 90's. He also has been experiencing a higher resting and sleeping heart rate than his normal, an upset tummy, less energy, and occasional 'grunting' with his breaths. all of which could be rejection or pneumonia recovery along with just some 'bad days' with no true explanation. Ohhhh....... that constant concern and wonder of a 'Heart Mommy'!!!!
(Now it's 5:30 am on Thursday June 16, 2011)
Mason was supposed to have his biopsy and MRI today but it was pushed back about 1 1/2 weeks ago because of his pneumonia to June 30th. This is because of the risk of anesthesia after having a recent respiratory infection. He is also scheduled one week prior to that on June 23 for an echo and exam in transplant clinic. Although, because my concern I called yesterday to talk with Mason's transplant nurses to update them on how Mason has been doing. Due to all of his symptoms that I mentioned above they want to see him today in clinic. ( I forgot to mention that earlier in the week our pediatrician Dr W listened to Mason because of my concern of his continued lower O2 sats at night now, more than two weeks past his hospital discharge. The news was good and bad......his lungs sound much better in fact just about back to normal. It is great that his lungs have cleared up, but bad because it poses the question all the more- what is going on then???)
Hopefully today's appointment will bring some answers to my concerning questions!!! I'll update with any news. Please pray for the health and strength of Mason's heart and lungs :)
"Your father in heaven knows your name and knows your circumstance. He hears your prayers. He knows your hopes and dreams,including your fears and frustrations. He knows what you can become through faith in him." ~ Jeffrey R. Holland
7 comments:
Poor baby and poor mama. You are doing an AMAZING job taking care of Mason. Miss you. colton is enjoying his whale pajamas this summer. Thank you again for those! Take care.
But.... he looks so cute and happy in the swing. I love the picture. Summer, you are such a loving and devoted mom. You and Mason are really blessed to have each other.
Oh Summer, This post sounds just like I had written it! We think just like each other. K has had the same issues and I had the same fears. After this last antibiotic her resting heart rate and sats at night look much better than they have in a long time. That also made me fear the "R" word. Also, Kaidence is not as tired as she was (but still seems a little more tired than usual). Mason and K just want to keep us on our toes. Funny thing is that K's lungs sounded clearer as well but she was still having these issues. So wierd that they both have the same symptoms....Call me sometime. We can stay awake late at night checking heart rates and sats and worry together.
Worry does not empty tomorrow of it's troubles
It empties today of it's strength
Please know Mason is held close in Prayer and you too Summer.
{{{{hug}}}}
Wow! You have been through so much with Mason. The worry never seems to stop, just slows down at times. I am fortunate that Isaac's heart has been stable for a few years although these ear surgeries can change that in a heartbeat. Last year in July Isaac was in the hospital much longer than expected because of problems the reconstructive ear surgery gave him. He will have another stage of ear surgery in a few days, hopefully with no glitches. I will keep praying for Mason, and hope that Mason can enjoy his childhood as he should. Keep the faith, Heart Hugs, Djinni Yancey
I hope you were able to get some answers. I actually saw you yesterday walking into Primary and wanted to stop and say hi- but I was rushing out the door. I was there because Ash had a short 3 day stay at the ER again- mystery fever and lethargic, but they were able to rule out an infection in his heart.
I don't think the concerned state ever goes away does it? I sure hope so! Libbi is much simpler than Mason and i still live in the constant state of wonder and planning around each appt..step..illness.. its very frustrating but we are soooo blessed to have our little ones here with us! I'll take it! Hang in there, he will be just fine i know it :) Libbis MRI is June 29, the day before Masons. Good luck!!
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