Monday, July 19, 2010
Recovery...
Sorry it has taken me so long to post again. I forget how crazy things get post-op and I really haven't had time to focus on writing updates. I just feel like things were changing almost hour to hour over the past week. It is so hard to write all these things and then come back an hour later and say, "Ok, change of plans!"
So here we go...
Friday, Ruthie had her Quintin line removed and replaced with a central line in her neck. She also was extubated after she "came up" from the sedation in the OR. She was awake and pretty content Friday evening.
Saturday things changed a bit. Ruthie had a good day. She was content and hanging out. Then late Saturday night/ early Sunday morning she was re-intubated.
Since July 11th, Ruthie has been back on the vent. She has had a heart cath, a heart biopsy, a quintin line re-inserted and then taken out, a LA removed (Left Atrium line from her heart transplant), two peripheral lines removed, a ng suctioning tube placed, and an art line removed and replaced. She has had a few ab ultrasounds and gi studies done. Numerous chest x rays and blood cultures performed. Different checks for viruses and infections and anything in between.
She is currently happy:) Her biopsy showed no signs of rejection! WOO HOO!
Her GI studies show that she has reversible liver damage. This means that she should recover fully from living in heart failure. They are still concerned. Ruthie's stomach is a bit descended. Her liver and spleen are still enlarged. The doctors seem to think, though, that her body is still recovering and that she just needs time.
Her diaphragm is also suffering from her heart failure lifestyle. She is a bit weaker. They are thinking that is what is keeping her from being able to come off the vent and off the o2% (which is at 30% now from 66%). So they changed her setting on the vent so she can learn to take deeper breaths. She is having "PT" on the vent.
They have restarted her feeds again and we have progressed to 10 mils an hour from 5 mils an hour. We are hoping to slowly get her back to eating without stressing her out.
Everything is happening. Everything is moving. Everything is going well...
..... It's just occurring slowly. Slow and steady. She needs time, so time is what we will give her.
She is slowly letting her little personality show again...
Just look at those eyes rolling at me! She is a little diva sometimes.
And then other times (like yesterday on her 11 months birthday day) she is so smiley.
And then the times when she is as snug as a bug in a rug!
We are so grateful for all the support and prayers. She is definitely feeling the love. She is blessed to have all of you in her life. We know that God has placed us in the right hands.
Please continue to pray for Ruthie and Ruthie's angel donor. Pray for strength, courage, and peace. Pray for wisdom and guidance for the doctors and the nurses. Pray for our continued faith and trust in God.
We in turn pray for you. You have shown such compassion through your words of advice, support or even just listening. Thank you! Thank you for being there for us!
We do have another heart biopsy tomorrow for Ruthie at 7:30am. They are once again checking her rejection levels. Please pray that we have no signs of rejection.
It is in His hands!
HUGS!
So here we go...
Friday, Ruthie had her Quintin line removed and replaced with a central line in her neck. She also was extubated after she "came up" from the sedation in the OR. She was awake and pretty content Friday evening.
Saturday things changed a bit. Ruthie had a good day. She was content and hanging out. Then late Saturday night/ early Sunday morning she was re-intubated.
Since July 11th, Ruthie has been back on the vent. She has had a heart cath, a heart biopsy, a quintin line re-inserted and then taken out, a LA removed (Left Atrium line from her heart transplant), two peripheral lines removed, a ng suctioning tube placed, and an art line removed and replaced. She has had a few ab ultrasounds and gi studies done. Numerous chest x rays and blood cultures performed. Different checks for viruses and infections and anything in between.
She is currently happy:) Her biopsy showed no signs of rejection! WOO HOO!
Her GI studies show that she has reversible liver damage. This means that she should recover fully from living in heart failure. They are still concerned. Ruthie's stomach is a bit descended. Her liver and spleen are still enlarged. The doctors seem to think, though, that her body is still recovering and that she just needs time.
Her diaphragm is also suffering from her heart failure lifestyle. She is a bit weaker. They are thinking that is what is keeping her from being able to come off the vent and off the o2% (which is at 30% now from 66%). So they changed her setting on the vent so she can learn to take deeper breaths. She is having "PT" on the vent.
They have restarted her feeds again and we have progressed to 10 mils an hour from 5 mils an hour. We are hoping to slowly get her back to eating without stressing her out.
Everything is happening. Everything is moving. Everything is going well...
..... It's just occurring slowly. Slow and steady. She needs time, so time is what we will give her.
She is slowly letting her little personality show again...
Just look at those eyes rolling at me! She is a little diva sometimes.
And then other times (like yesterday on her 11 months birthday day) she is so smiley.
And then the times when she is as snug as a bug in a rug!
We are so grateful for all the support and prayers. She is definitely feeling the love. She is blessed to have all of you in her life. We know that God has placed us in the right hands.
Please continue to pray for Ruthie and Ruthie's angel donor. Pray for strength, courage, and peace. Pray for wisdom and guidance for the doctors and the nurses. Pray for our continued faith and trust in God.
We in turn pray for you. You have shown such compassion through your words of advice, support or even just listening. Thank you! Thank you for being there for us!
We do have another heart biopsy tomorrow for Ruthie at 7:30am. They are once again checking her rejection levels. Please pray that we have no signs of rejection.
It is in His hands!
HUGS!
Friday, July 9, 2010
From Madame Blueberry to Pinkalicious
As many of you know, Ruthie has a big obsession with Veggietales. She completely blocks out the rest of the world when Larry and Bob are on her TV. We even joke around (after each road trip) that "Yes, Veggietales works in this room too." Out of all the various Veggietales tapes (yeah, I said it. Tapes... VHS. Ah, the good old days) and dvds, she has favored one character, Madame Blueberry.
She of course is blue....
just like our little blueberry Ruthie (pre-transplant)
However, as suggested by Dr. Oren (a CICU attending) Ruthie needs a new obsession. He always use to joke, pre-transplant, that we had Ruthie's room so pink that it almost made her look pinker. The Power of Persuasion. He then suggested that we look into the book series, PINKALICIOUS! So of course, we did and the main character, Pinkalicious is definitely Miss Ruthie.
Just look at Miss Pinkalicious (post transplant):
Oh what a difference a heart makes!
Ruthie still plans on making new friends (Pinkalicious) and keeping the old (Madame Blueberry).
Now for the medial stuff:
Ruthie is on a few immune suppressant drugs to help prevent rejection. She is starting to eat, sleep and poop on a regular schedule again. Her feeds are up to 5 mils an hour (giving her 4 oz a day). She remains on the TPN and lipids, though, for her main nutrition. She has 2 peripheral IVS, an art line, a double broviac and a quintan. Today she is down to pressure support on the vent.
She has a quick OR visit scheduled for one today. They are removing the quintan because it has a leak in the line. Dr. H will be removing it and replacing it with some type of pheresis cath line. It shouldn't take too long for him to get the lines in and out. AND as long as things go well, she will be extubated after the OR visit! That's right, EXTUBATED!! WOO HOO!
So we are moving right along. We are taking baby steps and of course letting Ruthie tell us when we can push her. We are still praying constantly for the donor angel and his/her family. We are eternally grateful to them for their generosity. They willing gave us the gift of life. Thank you, thank you , thank you!
Thank you to all of our supporters. Your prayers keep us strong. We love you all!
HUGS!
The Yarbrough's
She of course is blue....
just like our little blueberry Ruthie (pre-transplant)
However, as suggested by Dr. Oren (a CICU attending) Ruthie needs a new obsession. He always use to joke, pre-transplant, that we had Ruthie's room so pink that it almost made her look pinker. The Power of Persuasion. He then suggested that we look into the book series, PINKALICIOUS! So of course, we did and the main character, Pinkalicious is definitely Miss Ruthie.
Just look at Miss Pinkalicious (post transplant):
Oh what a difference a heart makes!
Ruthie still plans on making new friends (Pinkalicious) and keeping the old (Madame Blueberry).
Now for the medial stuff:
Ruthie is on a few immune suppressant drugs to help prevent rejection. She is starting to eat, sleep and poop on a regular schedule again. Her feeds are up to 5 mils an hour (giving her 4 oz a day). She remains on the TPN and lipids, though, for her main nutrition. She has 2 peripheral IVS, an art line, a double broviac and a quintan. Today she is down to pressure support on the vent.
She has a quick OR visit scheduled for one today. They are removing the quintan because it has a leak in the line. Dr. H will be removing it and replacing it with some type of pheresis cath line. It shouldn't take too long for him to get the lines in and out. AND as long as things go well, she will be extubated after the OR visit! That's right, EXTUBATED!! WOO HOO!
So we are moving right along. We are taking baby steps and of course letting Ruthie tell us when we can push her. We are still praying constantly for the donor angel and his/her family. We are eternally grateful to them for their generosity. They willing gave us the gift of life. Thank you, thank you , thank you!
Thank you to all of our supporters. Your prayers keep us strong. We love you all!
HUGS!
The Yarbrough's
Tuesday, July 6, 2010
PINK! is my favorite color!
Yesterday seems so surreal. We got the call at 2:32 am from the transplant coordinator telling us that the ideal heart was on it's way and that our OR time was around 8am. We got to the hospital at 3:13am. We clearly wasted no time. Ruthie was wide awake and smiling we we got in. Around 6am, after they had pulled labs and done all of their pre-transplant rundown, our nurse got another call from the transplant coordinator saying that 10am was our new OR time. A minor setback, but OKAY!
At 9am, we spoke to the surgeon, Dr. Huddleson, and signed the various consent forms. At 9:45 am, we were walking down to the staff elevator with Ruthie. We gave our kisses, said our goodbyes and of course cried. However, these tears were not tears of sadness but of fear and JOY. OH so much JOY! By 10am, we were in our surgery waiting room and waiting for an update. We finally heard from the nurse and she said that things were taking a bit longer with the donor heart so it wouldn't be until after noon that we would get started with Ruth. So at that point, Ruthie was resting comfortably and doing what she does best, waiting.
At 1:45 pm, Ruthie's heart transplant surgery began! From 1:45- 3:15, Dr. Huddleson worked on opening scar tissue and getting to her heart. By 4:30, her old heart was out and her new heart was about to be sown in. At 5:30 pm, Ruthie's new heart was not only in but BEATING! Her new heart was BEATING! HOW MARVELOUS!
At 6:30 pm, Dr. Huddleson was finishing up his very handy work and closing Ruthie back up.
At 8:20 pm or so, we saw the face of a miracle worker. Dr. Huddleson came in and talked to us about the whole procedure. He said Ruthie was doing fine and her new heart looked great. He told us that they were getting her settled in the CICU and that if we wanted to go to the 7th floor parent's lounge and wait, a nurse would be out to get us shortly.
At 9:10 pm, we saw a nurse looking around for a family. THAT FAMILY WAS US! She took Josh and I back to see our little pumpkin for the very first time after transplant.
I don't know if I can even begin to express the emotions that ran through me at that point. I was excited, I was nervous, I was happy, I was overwhelmed with joy and relief. It felt like I was seeing Ruthie for the first time all over again. We walked into the room filled with doctors and nurses (working hard to get her settled). She was of course on the vent and very much so sedated and relaxed.
Her color, though, INDESCRIBABLE! SHE WAS PINK! She IS pink! Her toes no longer had a blue, dusky tint. Her eyelids and lips looked as though she had been playing with my blush and lipstick. Her little fingers were no longer showing her blue, very blue, blood and veins. SHE IS A BRAND NEW PINK BABY!
I can't believe this day has finally come! I believe that yesterday we saw God. We saw God in the faces of our families, friends, nurses, doctors and staff. We saw God's miracle in Ruthie. She is a miracle. Her story is a miracle. We are so truly blessed.
She is now resting peacefully in her CICU temporary home. She is very much sedated and on muscle relaxers. Today, she will undergo plasmapheresis. They need to take out the antibodies from her plasma so that her body will not go into major rejection to the new heart. This should be started this afternoon. We are officially on the road to recovery for her new heart:)
I know I have made this a really long post, but there is a little more to this story.
Back on Jan. 21, 2010 Josh, Ruthie and I were all in the Heart Station at SLCH for Ruthie's pre- Cath work up. (This was when we were learning if the Glenn or a transplant were in our near future). We had to get an echo, ekg and various other assessments done the day prior to the Cath. As we waited in a rather busy Heart Station waiting room, we saw this story on channel 5 news:
http://www.ksdk.com/news/difference/story.aspx?storyid=193403&catid=180
At that moment, Josh and I had a feeling that we were in for the long haul. We knew that God doesn't place these things into our life without a reason and we felt that the news story was a sign saying this is what's to come.
Well, needless to say, we did hit the transplant path and waiting list on Feb. 3, 2010. I kept telling Josh how bad I wanted the dream catcher. I wanted Ruthie to have it so she could then get her heart. She really needed that good luck.
On July 1, 2010 Ruthie received the dream catcher. Our child life specialist had received it in the mail and it was addressed to Ruthie. God once again was showing me to have Hope. To know that even when you feel defeated that He will rise up and show you His light. I just felt a calming presence that day. I felt as though things were falling into place. Even though Ruthie's status had not changed, I felt things brewing.
5 days later, we got the call. We got the call that we had been waiting to get since Feb. 3rd.
Do you believe in miracles? I do! I am the proud parent of a living miracle.
Thank you for your continuous prayers. We ask that you not only keep praying for Ruthie as she recovers, but also for the angel donor whose family gave the gift of life. We pray that God grants them peace, understanding, courage and strength as they go through their grieving process. We pray that they will know how much their gift means to us.
Thank you God. Thank you for answering our prayers. Thank you for keeping our faith in You so strong. We know that you will provide and we rejoice in Your ways.
AMEN!
At 9am, we spoke to the surgeon, Dr. Huddleson, and signed the various consent forms. At 9:45 am, we were walking down to the staff elevator with Ruthie. We gave our kisses, said our goodbyes and of course cried. However, these tears were not tears of sadness but of fear and JOY. OH so much JOY! By 10am, we were in our surgery waiting room and waiting for an update. We finally heard from the nurse and she said that things were taking a bit longer with the donor heart so it wouldn't be until after noon that we would get started with Ruth. So at that point, Ruthie was resting comfortably and doing what she does best, waiting.
At 1:45 pm, Ruthie's heart transplant surgery began! From 1:45- 3:15, Dr. Huddleson worked on opening scar tissue and getting to her heart. By 4:30, her old heart was out and her new heart was about to be sown in. At 5:30 pm, Ruthie's new heart was not only in but BEATING! Her new heart was BEATING! HOW MARVELOUS!
At 6:30 pm, Dr. Huddleson was finishing up his very handy work and closing Ruthie back up.
At 8:20 pm or so, we saw the face of a miracle worker. Dr. Huddleson came in and talked to us about the whole procedure. He said Ruthie was doing fine and her new heart looked great. He told us that they were getting her settled in the CICU and that if we wanted to go to the 7th floor parent's lounge and wait, a nurse would be out to get us shortly.
At 9:10 pm, we saw a nurse looking around for a family. THAT FAMILY WAS US! She took Josh and I back to see our little pumpkin for the very first time after transplant.
I don't know if I can even begin to express the emotions that ran through me at that point. I was excited, I was nervous, I was happy, I was overwhelmed with joy and relief. It felt like I was seeing Ruthie for the first time all over again. We walked into the room filled with doctors and nurses (working hard to get her settled). She was of course on the vent and very much so sedated and relaxed.
Her color, though, INDESCRIBABLE! SHE WAS PINK! She IS pink! Her toes no longer had a blue, dusky tint. Her eyelids and lips looked as though she had been playing with my blush and lipstick. Her little fingers were no longer showing her blue, very blue, blood and veins. SHE IS A BRAND NEW PINK BABY!
I can't believe this day has finally come! I believe that yesterday we saw God. We saw God in the faces of our families, friends, nurses, doctors and staff. We saw God's miracle in Ruthie. She is a miracle. Her story is a miracle. We are so truly blessed.
She is now resting peacefully in her CICU temporary home. She is very much sedated and on muscle relaxers. Today, she will undergo plasmapheresis. They need to take out the antibodies from her plasma so that her body will not go into major rejection to the new heart. This should be started this afternoon. We are officially on the road to recovery for her new heart:)
I know I have made this a really long post, but there is a little more to this story.
Back on Jan. 21, 2010 Josh, Ruthie and I were all in the Heart Station at SLCH for Ruthie's pre- Cath work up. (This was when we were learning if the Glenn or a transplant were in our near future). We had to get an echo, ekg and various other assessments done the day prior to the Cath. As we waited in a rather busy Heart Station waiting room, we saw this story on channel 5 news:
http://www.ksdk.com/news/difference/story.aspx?storyid=193403&catid=180
At that moment, Josh and I had a feeling that we were in for the long haul. We knew that God doesn't place these things into our life without a reason and we felt that the news story was a sign saying this is what's to come.
Well, needless to say, we did hit the transplant path and waiting list on Feb. 3, 2010. I kept telling Josh how bad I wanted the dream catcher. I wanted Ruthie to have it so she could then get her heart. She really needed that good luck.
On July 1, 2010 Ruthie received the dream catcher. Our child life specialist had received it in the mail and it was addressed to Ruthie. God once again was showing me to have Hope. To know that even when you feel defeated that He will rise up and show you His light. I just felt a calming presence that day. I felt as though things were falling into place. Even though Ruthie's status had not changed, I felt things brewing.
5 days later, we got the call. We got the call that we had been waiting to get since Feb. 3rd.
Do you believe in miracles? I do! I am the proud parent of a living miracle.
Thank you for your continuous prayers. We ask that you not only keep praying for Ruthie as she recovers, but also for the angel donor whose family gave the gift of life. We pray that God grants them peace, understanding, courage and strength as they go through their grieving process. We pray that they will know how much their gift means to us.
Thank you God. Thank you for answering our prayers. Thank you for keeping our faith in You so strong. We know that you will provide and we rejoice in Your ways.
AMEN!
Monday, July 5, 2010
Amen. Amen I say to you!
At 2:32am on July 5, 2010 we received the call. Ruthie has a new heart on the way. We should be in the OR at 8 am!
Please, please pray for the soul of the donor and for the donors family! We are so grateful that they chose to give the gift of life. We pray that God will continue to give them peace and strength.
Please pray for Ruthie during the next 24 hours as she gets the chance of new life!
Amen!
Thank you for the constant prayers!
God is good!
Hugs!
The Yarbroughs
Please, please pray for the soul of the donor and for the donors family! We are so grateful that they chose to give the gift of life. We pray that God will continue to give them peace and strength.
Please pray for Ruthie during the next 24 hours as she gets the chance of new life!
Amen!
Thank you for the constant prayers!
God is good!
Hugs!
The Yarbroughs
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