Another week down and we are super thrilled with Owen's progress!! We should have biopsy results by tomorrow morning sometime.
Tuesday, March 28, 2017
Biopsy #2
Monday, March 27, 2017
First Weekend Outpatient
Our first weekend outpatient did not disappoint. We relaxed and enjoyed the amazing weather. Owen needed some workout clothes for physical therapy and we hit Target. I can't tell you the last time I was in Target and it was so hard to not shop around. We were in and out. Doesn't he look ready to pump up those muscles?! Owen had his PT eval today and we were given exercises to do during the week and will followup a few days a week for a while.
It was nice to have a three day break from labs, but we were back at it first thing this morning. So grateful that he is an easy stick and he is so brave. It wasn't always this easy.]
Back home...
Logi has a new love for Peppa Pig. Soon he'll start talking to us in a British accent. I found George and Peppa at the hospital gift shop and was so excited to send them home with Carson last week. Logi loves them!
My boys are quite opposite. Logi loves to build and doesn't like it when they fall over. Owen used to hate building and would look forward to destroying things. Logi is super independent and Owen still likes us to do everything for him. Logi doesn't mind being a little Messy and loves to get wet.. Owen does not. Love these boys of ours.
Owen has been ravenous!! He is wanting foods he hasn't eating in forever. He still has a small appetite and only eats a minimal amount, but the variety is getting better. He has been asking for Olive Garden breadsticks for the longest time. We finally made the 30 min trek across the bridge to Freemont for some Olive Garden take out.
He has been eating an actual breakfast which he hasn't done in at least a year. A few bites of each thing and a sip or two of orange juice, but he's doing it. I'm trying to not get too excited because I know once we wean these steroids down a bit, the appetite will wean as well. I'm going to enjoy it while it lasts.
Back home...
Logi has a new love for Peppa Pig. Soon he'll start talking to us in a British accent. I found George and Peppa at the hospital gift shop and was so excited to send them home with Carson last week. Logi loves them!
You know we don't get much rain in the desert, but it drizzled a little this weekend. Logi was so excited to "blash" in the puddles. Poor guy could only find these puddles. Oh he is a doll!
I had to document this.. last night Kam calls me laughing and said she had to call 911. Carson was spraying weeds in the back and our rosemary bush caught fire and went up in flames. I can't imagine anything smelling worse than burnt rosemary. Our neighbors jumped the fence and helped extinguish it. Hello.. nice to meet you.. we are your new neighbors. :) I wish he burnt down the tree next to it instead. Can't wait to get home and finish landscaping.
How do I have no pics of Kam? We facetime most days for a long time. She is getting ready for Prom in a few weeks, SATs, dance concerts and finals coming up. It's a busy time to be a Junior. This weekend she did some volunteering with her friends at the local elementary and they did face painting. I love that she still tells me every detail of her day.. I hope it never changes.Feeling Blessed.
Friday, March 24, 2017
Grateful Heart
My heart is heavy tonight as I learned we lost another dear friend to heart disease. The tears have rolled freely tonight. It's not lost on us what a miracle Owen is and how fragile life really is. I've also had both Owen's donor families on my mind this week. We are so very blessed and grateful that they chose to save our son. We are full of gratitude and we pray for them nightly.
Our first night at the RMH was a dream. We participated in the Family Album Project and Owen missed his photo shoots (here, here and here)with Virginia. We made pizzas for dinner and crashed early. It was amazing to sleep 8 hours without being interrupted for vitals. This morning Owen woke up requesting a toasted (almost burnt) bagel with cream cheese, a food he has never tried before. He can't get enough! We had transplant clinic this morning and it went perfectly. I'm surprised we aren't on blood pressure meds yet with all the high dose steroids. Owen is just doing remarkable. He is eating so much food and is walking all over the place. It's all just a dream.
We will start an outpatient cardiac rehab program with physical therapy on Monday. This boy is going to be stronger than ever soon! We'll have labs Monday and Tuesday will be biopsy number 2 followed up with an 18hr IVIG infusion. This weekend.. we will have fun in Palo Alto!
Thursday, March 23, 2017
Zero Rejection and Discharged
This afternoon we received the best news... ZERO REJECTION!!! After stable labs, IV removal, ECHO, EKG, and Chest Xray, we were on our way! Owen is thrilled to be outpatient and he is so happy. It has been a very long 10 months leading up to today. I still can't believe we are post transplant and that things are going so well. Owen has had a record fast recovery and is doing fantastic.
Pinch me.
Pinch me.
Owen loves the new RMH. We have lots of friends here right now and that makes it pretty fun. Everywhere you go there is a friendly face and his friends are all fighting their own battles. We even got to visit with a family we lived with in 2013 at RMH. It is not always easy living with 80 or so other families, but we will make it great. Get ready to read about our fun adventures outpatient!!
Wednesday, March 22, 2017
Biopsy Day
Today has been very busy! The day started at 4am when Owen woke me up to change his gtube. It was loose and leaking a little and I guess it was time. So after a gtube swap, we attempted to sleep a little longer. Owen was NPO (no food or drink) at midnight, so you can imagine he was starving by 1pm when he finally went to the cath lab. We had visitors before the cath that brought awesome tshirts and gift cards. Thanks to all that donated, and thank you Eidennshink family for the visit!
We headed to the PACU to prep for surgery. Owen is totally comfortable with heading to the cath lab and it's not a big deal for him. I put on my bunny suite and we took him back. He asked for his mask to be flavored with 'fruit cocktail' and he went right to sleep. He was in and out in an hour, which was speedy! His pressures were amazing, but especially great considering he's only a week out. Usually the heart is stiff for a few weeks following transplant and the right atrial pressures are elevated. Owen's were pretty close to perfect! They felt comfortable enough to remove his PICC line, which was cuffed into place and is causing him major soreness tonight.
We should get biopsy results tomorrow.
It's always great to chat with the ladies in the Ford Surgery waiting area. They received a call when Owen was awake in recovery and the nurse wanted to know if I had his chips with me. LOL. He was ravenous after going 15 hours with no food and he has been feasting the rest of the afternoon.
My dad is amazing and drove my Pilot up today from AZ and brought all the things we couldn't bring on the life flight last week. He did a dinner run for Owen and got him his spicy wings. Kip and Harrison stopped by for a visit and Owen got some good laughs in. I'd say it was a great night!
Tuesday, March 21, 2017
Transplant Day 8
We said goodbye to Daddy today. He is back in AZ with the other kiddos and they missed him. I was out running errands today getting things ready for the RMH. Owen insisted on Costco mini pizzas and he wanted one tonight. Cooking in the RMH community kitchen is going to be such a challenge. It took me 15 min to find an over mit or spatula and then I burned his first pizza. He eventually got his pizza and ate half of it. He went for a few walks around the 3rd floor and played plenty of electronics (as you can see).
Tomorrow is biopsy day!!! He will go down in the afternoon for his first biopsy where they check for rejection and measure the pressures in his heart. He has never had biopsy rejection before so I'm praying this is going to be no different. Praying for a smooth procedure, no complications from the anesthesia and that we get good results. We are so close to breaking free!!
Monday, March 20, 2017
Transplant Day 7
Another day of resting up and getting stronger. Owen keeps telling everyone how great he feels! He was up walking the halls and did two laps around the floor with PT. His ribs were hurting tonight and he said "I don't know why, but my ribs are hurting and shooting pains up my side. Probably because they cracked them open to get my new heart in." He finally requested a little pain management so he got a small dose of Oxycodone and that sure did the trick quick. He was up and walking all around his room about 20 minutes later. The energy is unreal!
We checked off all the boxes for our transplant teaching today and tomorrow we will check all the meds. He is ready for discharge but we will stay inpatient until he goes down for his first biopsy on Wednesday. Carson will head home tomorrow to be with our other munchkins, who are fighting a nasty cold.
Owen and I will have a busy couple of weeks in Palo Alto. Lots of appointments, biopsies, cardiac rehab and school will keep our mind off missing home. We are so lucky to be surrounded by amazing "family" at the RMH. I'm looking forward to those chipmunk cheeks from the steroids. :)
PS.. the blue lips are only because he was eating blue dum dums all afternoon.
PS.. the blue lips are only because he was eating blue dum dums all afternoon.
HAPPY SPRING!!!
Sunday, March 19, 2017
Transplant Day 6
Today was chill. I ventured out for the first time since Monday and it felt amazing! Owen ate a little, drank a lot and took his first walk. He ditched the Tylenol and has zero pain.. it's insane! We changed all his dressings and his chest incision is looking freaky with all the staples (less risk of infection for Transplant kiddos). We have a busy week ahead of us preparing for discharge. The silly boy is back!
Saturday, March 18, 2017
Transplant Day 5
Owen's weight today was down to 46lbs, down from almost 52lbs pre op. I know in a month he will be solid and I can't wait to see it! It's hard to see him look so emaciated. I'm so proud of this little guy.. and who look at those glasses he picked out while we were home. ((LOVE))
These two are having a great Spring Break! Lots of relaxation and fun. Thanks to everyone keeping them busy, fed and watching out for them. I miss them like crazy, but we will all be together soon!
Friday, March 17, 2017
Nightly Recap -- 3 West
It has been an exhausting day all around. I'm running on empty but am hoping for a solid night of sleep tonight. We removed Owen's chest tubes with a decent dose of Ativan on board and he doesn't remember a thing. I'm so thankful for that. We moved him upstairs to 3W around 4pm and he was happy to be back. He was still enjoying the effects of Ativan and slept the entire afternoon, just waking at 8pm. I'll be sleeping in with him on my couch that I have learned to embrace the past nine months.
It's hard to see him so weak and I keep reminding myself, he just had major open heart surgery a few days ago. He is getting stronger and can adjust his body left to right. We have been working on sitting up unassisted this evening. Tomorrow, PT will get him up to bear weight in his legs.
His nurses have been peeking their heads in and telling him how proud they are of him. I'm pretty sure he beat some sort of record for getting out of the CVICU post transplant. It's not a title he aimed for and it's certainly not a competition, but a testament to the power of prayer and Owen's strength.
Tomorrow is a new day. We have been keeping Aly's family and this new donor family in our prayers. I feel an overwhelming gratitude and connection to them. They have given Owen life and I just can't get over what a miracle organ donation is. I'm feeling blessed tonight. I am emotionally and physically drained. You know what? It's all worth it!!
It's hard to see him so weak and I keep reminding myself, he just had major open heart surgery a few days ago. He is getting stronger and can adjust his body left to right. We have been working on sitting up unassisted this evening. Tomorrow, PT will get him up to bear weight in his legs.
His nurses have been peeking their heads in and telling him how proud they are of him. I'm pretty sure he beat some sort of record for getting out of the CVICU post transplant. It's not a title he aimed for and it's certainly not a competition, but a testament to the power of prayer and Owen's strength.
Tomorrow is a new day. We have been keeping Aly's family and this new donor family in our prayers. I feel an overwhelming gratitude and connection to them. They have given Owen life and I just can't get over what a miracle organ donation is. I'm feeling blessed tonight. I am emotionally and physically drained. You know what? It's all worth it!!
Transplant Day 4
Another uneventful night in the CVICU for Mr. Owen. I wish I could say the same for the entire unit. There are four kiddos on ECMO and it was a busy night in here. My heart can't take it. The terrifying cries of parents as their children are on the edge. I've been that mom. I've been there. It's too much. We didn't sleep well. Pray for all these sweet babies.
Owen is doing remarkably well! We have weaned him down to 3 liters of oxygen and keep chipping away at that. Today is a BIG day! We pulled pacer wires, Dialysis drain, 3 IVs and his Arterial line. All meds are switched to oral and he's getting gtube feeds slowly. Chest tubes are coming out within the hour.
Then we are MOVING ON UP to the step down unit!! We won't miss the CVICU at all and are amazed that on day 4, Owen is ready to move back to his home on 3West. It will be good for him!
We talked to the anesthesiologist who took care of him during the big surgery. She said his heart was so congested and his kidneys were taking a big hit... his heart wouldn't have held up much longer. His heart came at just the right time and we are so grateful!!
Today was the first day we physically got out of bed. He is weak and in serious need of nutrition. Heart Failure (for more than a year) has taken it's toll on his body. I am so excited to put some weight on this kid. The bruises will fade as he is no longer on anticoagulants. In a few weeks we should see a much healthier boy.
Today we marvel in his recovery and how BRAVE this boy is!! "Nothing will take me down!"
I"ll update from our new room in a bit!!
Thursday, March 16, 2017
Nightly Recap
It was another exhausting day. I would try to sneak away for a 20 min power nap and get called back after 10 min. I'm ready for a decent night sleep. Owen is doing great! He was pretty groggy all morning still. He is quiet and mostly trying to process everything. We did a few boluses of pedialyte and he took some oral meds. We finally decreased his oxygen to 4 liters and he was able to eat. He was so excited and asked for about a million different things and didn't take a single bite of anything. It all sounds so good, but he just couldn't stomach the idea of actually eating it. We'll get there eventually. I think he was mostly happy that eating was an option finally.
This afternoon, he perked up a little bit. We did a little PT and he sat up in bed unassisted. He hasn't required any pain medications, aside from the Tylenol every six hours. We removed his Transthoracic arterial line in his belly and that only bled for about 10 minutes. We changed his dressings on his chest tubes and his sternal incision. He shouldn't have a dressing on that so it can heal better in the open air, but he doesn't like the look of it. It's a little Frankenstein(ish) with all the staples and dried blood. He looked at photographs of it, but that was enough for him.
We are making major progress and tomorrow will be a new day. Lots to do tomorrow and each day he feels a little better. It's hard to believe he's not even 72 hours post transplant and we have made so much progress. It's incredible what a healthy heart can do!
Transplant Day 3
Owen had another uneventful evening and we both got a couple of hours of sleep off and on. Of course he woke up starving and keeps asking for food. We dropped his high flow nasal cannula down to 6liters and he's doing great. I started him on Pedialyte in his Gtube since he doesn't want to orally eat anything in a clear diet. He is ready for the good stuff! We just need to get a blood gas soon and then if he tolerates these Pedialyte boluses, we will start letting him eat his pretzels and peanuts. He drank a few sips of water and his voice sounds pretty ok so far.
We stopped his Epi, Dopamine, and Dex, He's only on Milrinone .5 (which will go away tonight or tomorrow), IV steroids, ATG (Rabbit Globulin), and we are slowly switching all his meds to oral pills. He is getting Tylenol every six hours around the clock for pain and he hasn't required anything more. I ask him a million times a day if he's in pain and the answer is always "no, I'm fine". The chest tubes are not too uncomfortable but we haven't gotten out of bed yet. PT is coming by in a bit to get him up and moving.
We are pulling his Arterial line in his abdomen this afternoon and we'll get rid of two PIVs. We are chipping away at his oxygen and he will get Albuterol and Mucomyst treatments today to help with the effusion in his right lung.
His vitals all look good and he will be in good spirits after he gets the ok to eat. He is already asking for the xbox and legos.
It's naptime now and I should join him.
Wednesday, March 15, 2017
Nightly Recap
It has been a LONG day. Owen has been nothing but BRAVE all day. It has been an emotional day with plenty of tears and fears. Extubation went well around 3pm and the first words out of his mouth were "I'm starving!" The hardest day of the entire post op process is Extubation day. It's so hard to tell them they can't eat or drink for HOURS when all they want is food. We did some sucking on the pink sponges, and he licked a dum dum. Just when he was ready to get a bite to eat at 7pm, we had to bump him from a regular oxygen cannula, to high flow. We can't eat or drink on high flow. It was not fun explaining that.
It has been an emotional day. Owen does not like narcotics and can't wait to get them out of his system. He gets emotional and everything makes him upset. His nurse and he were not meshing well towards the end of the day and he requested never to have her again. He has been communicating well and letting us know what he needs.
We removed his foley catheter, two PIVs in his feet and his breathing tube. He had dressing changes tonight on his PICC line, ART line and Transthoracic line in his belly. None of these things are fun and we are both exhausted. His nurse tonight is so calm and patient with him. He had a dose of Ativan to help with the emotional breakdowns and to help him relax before all his dressing changes. He is now resting peacefully and we are hoping for a good, quiet night.
His blood sugars have come down significantly, so that is good news. His blood gasses look great. It appeared on xray that he had a plueral effusion in his right lung, but the surgeon did a quick ultrasound and said we could diurese it off. We increased his diuretics and he is peeing like crazy. Tonight should bring lots of pee, clear lungs (no pneumothorax or effusions), and increased sats. He is on high flow at 9 liters.
Prayers continue! Tomorrow is another big day. Lots of rehab and we'll be decreasing some of his drips (inotropes) It's almost midnight and I'm just waiting for the evening rounds before heading into my closet for some rest.
We miss our kiddos at home and they are finally kicking their nasty viruses. We'll plan a time for them to join us up here. We got a room at the RMH tonight and we will be staying there for a couple months post transplant.
Good Night from the CVICU.
It has been an emotional day. Owen does not like narcotics and can't wait to get them out of his system. He gets emotional and everything makes him upset. His nurse and he were not meshing well towards the end of the day and he requested never to have her again. He has been communicating well and letting us know what he needs.
We removed his foley catheter, two PIVs in his feet and his breathing tube. He had dressing changes tonight on his PICC line, ART line and Transthoracic line in his belly. None of these things are fun and we are both exhausted. His nurse tonight is so calm and patient with him. He had a dose of Ativan to help with the emotional breakdowns and to help him relax before all his dressing changes. He is now resting peacefully and we are hoping for a good, quiet night.
His blood sugars have come down significantly, so that is good news. His blood gasses look great. It appeared on xray that he had a plueral effusion in his right lung, but the surgeon did a quick ultrasound and said we could diurese it off. We increased his diuretics and he is peeing like crazy. Tonight should bring lots of pee, clear lungs (no pneumothorax or effusions), and increased sats. He is on high flow at 9 liters.
Prayers continue! Tomorrow is another big day. Lots of rehab and we'll be decreasing some of his drips (inotropes) It's almost midnight and I'm just waiting for the evening rounds before heading into my closet for some rest.
We miss our kiddos at home and they are finally kicking their nasty viruses. We'll plan a time for them to join us up here. We got a room at the RMH tonight and we will be staying there for a couple months post transplant.
Good Night from the CVICU.
Extubated!!!
Our little hero did it!! The breathing tube is out and he is doing great! He is starving and can't eat or drink for a long while (to protect his airway) and he is super groggy from the sedatives. We turned off the Dilaudid so he is just on a low dose of continuous Dex and Tylenol around the clock. He is not having any pain, says he is comfortable and just wants suckers. Soon buddy.. Soon!
Keep the prayers rolling!
Transplant Day 2
Owen had a quiet evening with no major events. He woke up a little and was so sweet for the nurse. He asked for gauze to wipe his eyes because he hates the gel they use to hydrate his eyes. I slept on the unit and slept well. I came in at 4am to check on him and I startled him with my voice He helped me get him rotated and cozy and went back to sleep. Such a sweet boy!
This morning he was awake for a little bit but his breathing tube tape wasn't sticking well. We gave him a small dose of ativan before pulling the tape off his face and replacing it. I can't imagine that would be comfortable. He has been sound asleep ever since and it's around noon now.
The plan today is extubation! His echo, ekg, blood gases and labs all look good. We opened the blinds and cut his Dilaudid in half to help wake him up. He doesn't require much sedation so it takes him a while to wake up. When he finally wakes and is ready to party, we'll pull the tube.
He is currently done with IVIG, on day 2 of ATG and Steroids. His blood sugars have been pretty high so we may have to start insulin at some point. We are giving him calcium and potassium IV right now. It's always a little dance to find the right balance. He is on zero anti coagulants and is doing great.
Carson and I have been catching up. After so much time apart, this time together has been wonderful. It's nice to have my person here and to trade off with me when I need a small break. The kids are home with family and doing well. Still in the thick of a nasty cold so we will hold off on bringing them up until they are symptom free.
We feel BLESSED!!!
Tuesday, March 14, 2017
A Nightly Recap
Owen has been resting comfortably all day. He has woken up intermittently and is responsive to our questions. He doesn't like to be adjusted or messed with and quickly adjusts himself back to where he is comfortable. He says he isn't feeling any pain and seems content. We've had to use the heating blanket off an on during the day when his temp drops below 36* and I may be envious of that warm blanket. Anyone that has spent any amount of time in an ICU setting knows how cold it is.
We removed his Femoral arterial line while he was still pretty sedated. All his dressings were changed this afternoon and his sternal incision looks beautiful. The oozy blood has subsided after another dose of platlets. We finished up his IVIG early this evening and started his ATG (Rabbit Globulin). After a repeat xray this afternoon, Dr Maeda decided to hold off on the chest tube placement for the pneumothorax. He felt it was looking a little improved, but we won't know which way that will go by morning. He is a little fluid positive but we are waiting to diurese him until his BP increases a little (currently 86/45). It really is a balancing act. He is in good hands this evening.
We are hoping for a quiet night with plenty of rest. I'm going to sleep on the unit and Carson is back at the hotel resting up for a busy day tomorrow. Thank you for all the love, support and prayers. We feel all the love!! Prayers have been answered.
We removed his Femoral arterial line while he was still pretty sedated. All his dressings were changed this afternoon and his sternal incision looks beautiful. The oozy blood has subsided after another dose of platlets. We finished up his IVIG early this evening and started his ATG (Rabbit Globulin). After a repeat xray this afternoon, Dr Maeda decided to hold off on the chest tube placement for the pneumothorax. He felt it was looking a little improved, but we won't know which way that will go by morning. He is a little fluid positive but we are waiting to diurese him until his BP increases a little (currently 86/45). It really is a balancing act. He is in good hands this evening.
We are hoping for a quiet night with plenty of rest. I'm going to sleep on the unit and Carson is back at the hotel resting up for a busy day tomorrow. Thank you for all the love, support and prayers. We feel all the love!! Prayers have been answered.
Transplant Day 1
Owen's transplant is complete and he's doing great! After a long nine hours in the operating room, I am sitting next to our boy again. We headed down to the PACU around 9pm last night to get things moving along. After a quick IV placement and lots of love, we sent Owen off to the OR. He has a GREAT team in his corner and we all felt good vibes going in. Owen was excited to "get the sedation started!"
Our first update was at 12am: The visual on the donor heart looks perfect and will be here around 3am. Intubation went well, all lines are in, and Owen is doing great!
Due to Owen's historical antibody sensitization, the team did a round of plasmapheresis in the OR to flush his antibodies from his blood. The donor match was perfect!
Our second update was at 3am: The heart has arrived. Owen is doing great on bypass and is ready for his new heart
The next update was at 5am: The Heart is in and beating well!!! Owen is doing great! They are closing him up and then he will get settled into the CVICU.
Our final update was from the surgeon himself. Maeda told us that it went perfectly! The heart started beating right away and he had no issues on bypass. His kidney function was struggling in the OR so they placed a peritoneal dialysis catheter in case they needed to utilize dialysis. It looks like we won't be needing it as of now. His SVC has been stented for a while, so the surgeon used the donor's SVC to create a new one for Owen.
At 7am: Owen was settling into his room. I grabbed some breakfast and a quick shower and have been bedside with him. He is zonked out! Rest up little man.. it's going to get busy starting tomorrow.
The medical stuff:
Owen has a pneumothorax in his right lung, so the surgeon will place a pigtail drain bedside in a bit to help re inflate the lung. He has two chest tube drains. The ventilator is at 40%. He has a PICC line still, two art lines (radial and femoral), peritoneal dialysis drain, transthoracic right atrial line in his abdomen, pacer wires, and five PIVs. We have plenty of access. He is on Milrinone, Epi, Dopamine, Nipride, Diludid and Dex (for pain and sedation). He is getting Platlets to help with his bleeding. He is a little oozy from all the anticoagulants he was on prior to transplant.
Then plan is to let him rest up today, especially after his third chest tube is placed. We are aiming for sprints on the vent this evening and extubation tomorrow morning. We all know that plans can change but we are so thrilled with where he is now. Keep the prayers coming, they are working!!!
Due to Owen's historical antibody sensitization, the team did a round of plasmapheresis in the OR to flush his antibodies from his blood. The donor match was perfect!
Our second update was at 3am: The heart has arrived. Owen is doing great on bypass and is ready for his new heart
The next update was at 5am: The Heart is in and beating well!!! Owen is doing great! They are closing him up and then he will get settled into the CVICU.
Our final update was from the surgeon himself. Maeda told us that it went perfectly! The heart started beating right away and he had no issues on bypass. His kidney function was struggling in the OR so they placed a peritoneal dialysis catheter in case they needed to utilize dialysis. It looks like we won't be needing it as of now. His SVC has been stented for a while, so the surgeon used the donor's SVC to create a new one for Owen.
At 7am: Owen was settling into his room. I grabbed some breakfast and a quick shower and have been bedside with him. He is zonked out! Rest up little man.. it's going to get busy starting tomorrow.
The medical stuff:
Owen has a pneumothorax in his right lung, so the surgeon will place a pigtail drain bedside in a bit to help re inflate the lung. He has two chest tube drains. The ventilator is at 40%. He has a PICC line still, two art lines (radial and femoral), peritoneal dialysis drain, transthoracic right atrial line in his abdomen, pacer wires, and five PIVs. We have plenty of access. He is on Milrinone, Epi, Dopamine, Nipride, Diludid and Dex (for pain and sedation). He is getting Platlets to help with his bleeding. He is a little oozy from all the anticoagulants he was on prior to transplant.
Then plan is to let him rest up today, especially after his third chest tube is placed. We are aiming for sprints on the vent this evening and extubation tomorrow morning. We all know that plans can change but we are so thrilled with where he is now. Keep the prayers coming, they are working!!!
Monday, March 13, 2017
We Have A Heart!!
UPDATE:: Owen will be going to the OR around 10pm tonight.
After 292 days on the transplant list... Owen got the call! It was 11:30pm and I had just fallen asleep. Dr Kaufman told me about a perfect offer and things were in motion. Nothing prepares you for this moment...even after experiencing it before. I shake to my core with adrenaline, fear, excitement and then the wave of grief hits. I imagine a family that is suffering their greatest loss. I go through the motions of arranging flights, hotels and packing. We kiss our other two loves goodbye and had my parents drop us off at Scottsdale Airport to meet our medic team.
We arrived at LPCH by 4am and settled into our room. Then we crashed for two hours...I took the recliner and Carson took the couch that I called my bed for half the year.
We had a wonderful week at home!! We are recharged and ready to tackle this next journey.
Pray with us. Pray for Aly's family...they gave us 3 1/2 amazing years!! This perfect heart has served its purpose and we have seen miracles happen. Owen had a blessing (thanks Kip and Harrison) today and he feels calm and ready! We are just waiting around and spending time together. I think I may even nap. It's unlikely we will go to the OR before 9pm. There is a lot of orchestrating that happens with this process.
Pray for the donor family that they will feel peace. That they know their child's heart is going to a boy that will live life to the fullest and do great things. I'll post another update in a bit when we have a better idea of when we will head into surgery. Thank you for all the support!
After 292 days on the transplant list... Owen got the call! It was 11:30pm and I had just fallen asleep. Dr Kaufman told me about a perfect offer and things were in motion. Nothing prepares you for this moment...even after experiencing it before. I shake to my core with adrenaline, fear, excitement and then the wave of grief hits. I imagine a family that is suffering their greatest loss. I go through the motions of arranging flights, hotels and packing. We kiss our other two loves goodbye and had my parents drop us off at Scottsdale Airport to meet our medic team.
Wednesday, March 8, 2017
Home is WONDERFUL!!!
We made it home!! We made it home by Saturday morning and it has been a wild ride since then. Being together as a family, under one roof, is wonderful!! Owen is thriving at home and loves the freedom. If we ever wondered if we were making the right decision by coming home, we are certain now that we are where we are meant to be.
I have been cramming everything that needs to get done into the next two weeks. The house is getting unpacked and I'm getting things organized. Nursing is all set up and we did our first dressing change today. The management of Milrinone has been seamless between the pharmacist, nursing and myself. We had our first visit with Owen's transplant cardio in AZ and it he spent a good 90 minutes talking to me. We are holding off on dual listing for the time being, but that is an ongoing conversation. Owen's echo looks stable (severe Tricsupid regurge, moderate Mitral valve regurge, mod-severe left venticle dysfunction, mild-mod right ventricle dysfunction) and we did labs this morning so we will get those results from Stanford later today. His energy is great and he is eating!!! Outpatient looks good on him.
We will follow up with cardiology in two weeks and then head back to Stanford on April 2nd.
I have been cramming everything that needs to get done into the next two weeks. The house is getting unpacked and I'm getting things organized. Nursing is all set up and we did our first dressing change today. The management of Milrinone has been seamless between the pharmacist, nursing and myself. We had our first visit with Owen's transplant cardio in AZ and it he spent a good 90 minutes talking to me. We are holding off on dual listing for the time being, but that is an ongoing conversation. Owen's echo looks stable (severe Tricsupid regurge, moderate Mitral valve regurge, mod-severe left venticle dysfunction, mild-mod right ventricle dysfunction) and we did labs this morning so we will get those results from Stanford later today. His energy is great and he is eating!!! Outpatient looks good on him.
We will follow up with cardiology in two weeks and then head back to Stanford on April 2nd.
Here are some pics from our first week back home. It has been wonderful baking cookies, ordering pizza, cooking my favorite dinners, doing dishes, washing laundry in my own machines, and tucking my babies into bed under the same roof. I never thought I would be grateful to do dishes, or to take out the trash. We've done hair cuts, eye appointments, dental cleanings and have a ton coming up this next week. All the things I dreamt of doing while hanging out in the hospital are getting done. It's such a blessing and I am so happy!!
We miss our LPCH family and will see you all soon. Today kick started SPRING BREAK around here.. no school!!!!! I'll post more frequently next week and we'll have some fun adventures. Thank you for all the prayers and love. I kinda feel like I'm living a dream right now.
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