Let me first say that Melia recovered so well from her surgery that we have been operating at the usual Horner warp speed. Praise God for her quick rebound from open heart surgery!
This month has been full of summer camps, swimming in the lake and at the pool, swim team and swim meets! Melia has been a trooper through it all. She happily comes along as we travel all over Omaha. We discovered she loves the song, "The Wheels on the Bus" with the Veggietales Bob and Larry singing. So, even though I am growing weary listening to the same song over and over it is fun to hear her request it by name, do the actions and sit happily in the car!
Melia had a follow-up with our local cardiologist and our pediatrician during the past month. The cardiologist repeated an X-ray and Echo was so very pleased with the results! He even said, "Maybe she will only need one PA Banding and not two!" I was so happy to hear this. Even though it is not certain it has been one of my prayers all along and I was so elated to hear that it was a possibility. The PA Band seems to be doing the trick and hopefully as she grows it will get tighter and make the left ventricle work harder. Once it can maintain normal blood pressure then Dr. Hammel can proceed with a Double Switch (if we choose to use him). To determine whether or not her heart is ready the cardiologist will continue to do Echocardiograms. When we get closer to her next surgery they will repeat a cardiac MRI and do a heart catheterization to get an actual reading of the pressures in her ventricle. Also, her wound is healing very well. I have been impressed how much the over the counter product, Mederma, has helped lessen her scar already.
We also followed up with our pediatrician who indicated we might need to put Melia on thyroid medication for an underactive thyroid. They did this as a screening test because she was adopted and intially it was a little underactive. When she had her pre-op done they repeated the test and it was a little more underactive. I am hesitant to start a potentially life long medication because they have not yet done a full thyroid blood panel and because this little girl of mine shows no signs of lethargy or hypothyroidism! She sweats like crazy, eats great, is growing great, does not sleep excessively and has no tummy troubles.
So, I am opting to repeat her labs and meet with the Endocrinologist before starting meds. We'll see what happens.
So, for now we are operating with a healthy appearing little two year old who is VERY attached to her mama and LOVES to be held by mama! It is very sweet, but my arm is tired! Melia is also letting us know her opinion more and more and is quick to say, "no!" when she doesn't like our ideas. Her communication is improving all the time and she continues to be adored by her brothers and sister! Although she has not been swimming in the lake with her incision, she has been to the swimming pool and loved to splash around in the water. It is turning out to be a wonderful summer!
Lastly, I wanted to write one comment about being your child's advocate in the ICU. We had a great experience at Children's and I really liked most of our nurses, the mid-levels and our surgeon. Having said that, there were times when they would make a decision about Melia that was just "standard" and when I questioned why we were able to get things tailored to her care a little better. One instance was the medication they used to help her start peeing. Melia was not urinating initially so they appropriately started a diuretic to help her. Once her kidneys starting working they said she would go home on the diuretic for two weeks. Knowing that this medication can sometimes decrease potassium in the blood I asked if we could try stopping it and see what would happen. The nurses were quick to say, "No, usually all the patients go home on the medication for two weeks." I pushed a little and asked if they would please run it by the PA or doctor and low and behold they discontinued the medicine and she kept peeing! It may seem minor, but it drives home this point: ask why (nicely) and make sure you're satisfied with the answer. Do your best as a parent to ensure that your child is getting patient-centered care and not textbook care.
Well, that's the update for now! I will try and post pictures of our happy, summer kiddos sometime soon!
Friday, June 29, 2012
Monday, June 4, 2012
Post Op Day 5
Melia and I slept well with only one nurse interruption. She DOES NOT to take the sugary Ibuprofen or get her blood pressure taken so the brief awakenings take a little time to recover from.
Dr. Hammel (he was on call for the weekend) came in around 7 and instead of saying that we could go home, informed us that Melia's Echo from the previous day showed some progression of mitral valve leakage. Although the muscle itself was pumping well the leakage was worrisome for left ventricular failure. So, before going home we needed to get another Echo and post-op Chest X-ray to evaluate her heart one more time.
Once again the peace of God covered me COMPLETELY. I did not like the news, but had a peace that protected my heart and mind from anxiety in that moment. So, we spent the morning playing in the PICU and all the nurses commented on how cute and vibrant her looked. The cardiologist came in after her morning Echo and reassured me that he saw no reason for her to not to go home. She was acting fine and although she had some mitral valve leakage he sees that often and that in itself is not a huge concern. He emphasized that Dr. Hammel was very cautious with PA Band patients because he knows that if they decline after surgery it can happen fast. I am thrilled that he is so cautious, but was also happy to hear the cardiologists thoughts as well.
It emphasized to me the reality of what we are doing with Melia's heart. We are totally remodeling the muscle and function. By making the left ventricle work harder then her tricuspid valve leakage could improve, but until the strength of the LV muscle improves it can create more of a leakage with the other valve, the mitral valve. If the LV works too hard that muscle will get too thick and also become ineffective. The art of restructuring this life-sustaining muscle is precise and I am thankful we have a surgeon that is knowledgeable, skilled and aware of the delicate changes that need to take place for it to help sustain Melia's life a long, long time.
Anyway, we went downstairs for a Chest X-ray and waited and waited some more. Ryan came up to the hospital and I left around 11 to go to Hallie's dance recital. Ryan and Melia ate lunch and waited. Finally, after a series of calls Dr. Hammel responded that the Echo was the same or slightly improved and given her clinical status she was okay to GO HOME!!
At that point Ryan loaded up our things and took Melia home to take a long, uninterrupted nap in her own bed! Other than scheduled Ibuprofen our daughter has no other regular medicines to take. God has been good to us and we are thankful that He chose to answer our prayers this way.
I will continue to post about her post-operative recovery and later write about my PICU Parenting Observations....
Thanks to EVERYONE who is walking alongside us on this journey with our heart baby!
Dr. Hammel (he was on call for the weekend) came in around 7 and instead of saying that we could go home, informed us that Melia's Echo from the previous day showed some progression of mitral valve leakage. Although the muscle itself was pumping well the leakage was worrisome for left ventricular failure. So, before going home we needed to get another Echo and post-op Chest X-ray to evaluate her heart one more time.
Once again the peace of God covered me COMPLETELY. I did not like the news, but had a peace that protected my heart and mind from anxiety in that moment. So, we spent the morning playing in the PICU and all the nurses commented on how cute and vibrant her looked. The cardiologist came in after her morning Echo and reassured me that he saw no reason for her to not to go home. She was acting fine and although she had some mitral valve leakage he sees that often and that in itself is not a huge concern. He emphasized that Dr. Hammel was very cautious with PA Band patients because he knows that if they decline after surgery it can happen fast. I am thrilled that he is so cautious, but was also happy to hear the cardiologists thoughts as well.
It emphasized to me the reality of what we are doing with Melia's heart. We are totally remodeling the muscle and function. By making the left ventricle work harder then her tricuspid valve leakage could improve, but until the strength of the LV muscle improves it can create more of a leakage with the other valve, the mitral valve. If the LV works too hard that muscle will get too thick and also become ineffective. The art of restructuring this life-sustaining muscle is precise and I am thankful we have a surgeon that is knowledgeable, skilled and aware of the delicate changes that need to take place for it to help sustain Melia's life a long, long time.
Anyway, we went downstairs for a Chest X-ray and waited and waited some more. Ryan came up to the hospital and I left around 11 to go to Hallie's dance recital. Ryan and Melia ate lunch and waited. Finally, after a series of calls Dr. Hammel responded that the Echo was the same or slightly improved and given her clinical status she was okay to GO HOME!!
At that point Ryan loaded up our things and took Melia home to take a long, uninterrupted nap in her own bed! Other than scheduled Ibuprofen our daughter has no other regular medicines to take. God has been good to us and we are thankful that He chose to answer our prayers this way.
I will continue to post about her post-operative recovery and later write about my PICU Parenting Observations....
Thanks to EVERYONE who is walking alongside us on this journey with our heart baby!
Friday, June 1, 2012
Post Op Day 4
Day 4
What a great day! Melia started the day after a very restful night of sleep with few interruptions. She did sleep with her fruit snacks for security and ended up with one stuck in her hair that had to be removed with scissors, but other than that the morning was great.
After an uneventful rounding by the doctors it was determined that she was a "boring" patient. I couldn't be happier!! Shortly after rounds the nurses came in to remove her two peripheral IV's in the feet and her atrial line. The removal of these was no fun, but once it was done she had more freedom to move around. She was still hesitant to walk because the chest tube and pacer wires were still hanging out of her belly. Her personality really started showing as the morning progressed. She was coy and silly and talkative and wanted to go round and round and round the ICU in her wagon.
The docs also opted to discontinue her Lasix and she was able to continue urinating without this medicine the remainder of the day. As far as other medicines go, by the end of today the only medication Melia is on routinely is Ibuprofen three times a day! No morphine, no scheduled Tramadol, no scheduled Tylenol, just Ibuprofen! Melia also received another Echo to check her heart function with the band in place this morning. She handled the Echos beautifully, but taking Bubble Gum flavored Ibuprofen is torture for her...she throws a fit every time.
I ended up leaving for work after Melia had a light lunch (her appetite is not completely back) and Ryan was on hospital duty. He was fortunate enough to be with Melia after she woke from her nap and the NP from surgery came in to pull the pacer wires and chest tube. Melia was NOT a happy camper, but again calmed down within a half hour of them removing the tube. With this out she started walking and then running all over ICU!
Unfortunately, our social worker with Holt arrived just as Melia woke from her nap and the NP came in to remove the chest tube. In the midst of a wonderful day of recovery she was present for the only tearful part of the day. We are excited to show her the happy Melia at our next post placement visit in July.
I arrived back at the hospital by 5 and ate dinner with Melia around 5:30. The rest of the night was spent literally chasing our heart baby all over the second floor of the hospital! When her siblings arrived she greeted each of them with a huge smile and hug. It was precious to see our four kids all loving each other so very much.
Ryan left for home with the big kids and I am staying the night once again. We are planning to discharge tomorrow and get back to usual living. Tonight I told Melia that tomorrow she would get to go home and when I said home she replied by saying, "Hallie, Jake, Zac, Daddy." How heartwarming that "home" has quickly become the place where her family is. Our grandparent reinforcements from Kearney left to go home and get ready to serve at Royal Family Kids Camp starting Sunday. The Omaha grandparents are still on grandchild duty for tomorrow, but hopefully after that they can also relax and settle back into their usual routine. We are so incredibly thankful they willingly and lovingly served us this week by caring for the big kids so we could concentrate on Melia.
So, we are very close to checking surgery #1 off our list. Words can not express how thankful we are that God saw Melia through this, has sustained Melia and all of us and has enveloped us with peace. We are blessed.
Our journey through Melia's first heart surgery in pictures...
What a great day! Melia started the day after a very restful night of sleep with few interruptions. She did sleep with her fruit snacks for security and ended up with one stuck in her hair that had to be removed with scissors, but other than that the morning was great.
After an uneventful rounding by the doctors it was determined that she was a "boring" patient. I couldn't be happier!! Shortly after rounds the nurses came in to remove her two peripheral IV's in the feet and her atrial line. The removal of these was no fun, but once it was done she had more freedom to move around. She was still hesitant to walk because the chest tube and pacer wires were still hanging out of her belly. Her personality really started showing as the morning progressed. She was coy and silly and talkative and wanted to go round and round and round the ICU in her wagon.
The docs also opted to discontinue her Lasix and she was able to continue urinating without this medicine the remainder of the day. As far as other medicines go, by the end of today the only medication Melia is on routinely is Ibuprofen three times a day! No morphine, no scheduled Tramadol, no scheduled Tylenol, just Ibuprofen! Melia also received another Echo to check her heart function with the band in place this morning. She handled the Echos beautifully, but taking Bubble Gum flavored Ibuprofen is torture for her...she throws a fit every time.
I ended up leaving for work after Melia had a light lunch (her appetite is not completely back) and Ryan was on hospital duty. He was fortunate enough to be with Melia after she woke from her nap and the NP from surgery came in to pull the pacer wires and chest tube. Melia was NOT a happy camper, but again calmed down within a half hour of them removing the tube. With this out she started walking and then running all over ICU!
Unfortunately, our social worker with Holt arrived just as Melia woke from her nap and the NP came in to remove the chest tube. In the midst of a wonderful day of recovery she was present for the only tearful part of the day. We are excited to show her the happy Melia at our next post placement visit in July.
I arrived back at the hospital by 5 and ate dinner with Melia around 5:30. The rest of the night was spent literally chasing our heart baby all over the second floor of the hospital! When her siblings arrived she greeted each of them with a huge smile and hug. It was precious to see our four kids all loving each other so very much.
Ryan left for home with the big kids and I am staying the night once again. We are planning to discharge tomorrow and get back to usual living. Tonight I told Melia that tomorrow she would get to go home and when I said home she replied by saying, "Hallie, Jake, Zac, Daddy." How heartwarming that "home" has quickly become the place where her family is. Our grandparent reinforcements from Kearney left to go home and get ready to serve at Royal Family Kids Camp starting Sunday. The Omaha grandparents are still on grandchild duty for tomorrow, but hopefully after that they can also relax and settle back into their usual routine. We are so incredibly thankful they willingly and lovingly served us this week by caring for the big kids so we could concentrate on Melia.
So, we are very close to checking surgery #1 off our list. Words can not express how thankful we are that God saw Melia through this, has sustained Melia and all of us and has enveloped us with peace. We are blessed.
Our journey through Melia's first heart surgery in pictures...
Day 1...right after her Pulmonary Artery Banding was completed.
Day 2...Oxygen no longer needed
Day 3...up in the wagon and visiting with the therapy pet
Day 4...nothing but a central line left...running, laughing and playing
THANK YOU ALL FOR YOUR PRAYERS, THOUGHTFULNESS AND ACTS OF KINDNESS!
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