This is from yesterday. Darren was a bit sleepy and this picture was too cute not to post!
Last night was our first night not being woken up for medication or to check his blood pressure, O2 level, temperature, and listen to his heart!!! Woo Hoo!! 🎉 We fell asleep around 10pm and Darren was woken at 6:55am for a blood draw. He was very brave since it had to be a poke.
Chest x-ray is scheduled for 9:30am. Echo at some point and if all looks good....
WE BLOW THIS POP STAND!!!!!
So amazing to once again watch God heal our brave ❤ warrior!!!!
The 2pm chest tube removal turned into a 3:15 chest tube removal - but who was waiting anyway?!! I have come to call it "hospital time". A nurse compared it to a football game - "there is only 15 minutes left"....which translates to over an hour!
YAY!! That PESKY tube is GONE!!
The plan for tomorrow is a chest x-ray and an echo.
IF all looks good then we will be DISCHARGED!!!
I wrote these two verse on the room "white board"
Be strong and brave don't be afraid for the Lord your God goes with you. He will not fail you or abandon you. Deut. 31:6
Have I not commanded you? Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9
They finally rounded at 12:30 (is that technically still morning rounds?!). Darren is getting his pesky chest tube out at 2pm (Prayers appreciated!). Tomorrow he will have an echo and chest xray. If all looks good then we will be discharged....TOMORROW!! Praising God for healing our heart warrior Darren ❤❤
Jamma has visited Darren at the hospital everyday - TWICE each day!
She reads books to him (and helps me with my sore back!!)
AND she gave Darren a "parts box". The best gift ever!
Darren spent the first 3/4 of the day kind of tired. He complained his tummy was hurting and also his chest was aching. He did a little walking, but mostly wanted to ride in his wheelchair.
Darren's early morning chest x-ray looked good. He does have some fluid in his lungs, but that is to be expected so they upped his lasix. Darren had too much drainage from his 2nd chest tube yesterday to have it removed today.
This was the first smile we saw this week - Darren loved the magician!
(Photo taken on whatever day that was that the magician came. All the days are kind of melding together)
ALL the kids came to visit Darren today! He was SUPER happy - especially to see big brother Trevin, He even convinced Trevin to sit with him in his hospital bed while they played video games!
Later in the day Darren got more active and decided to look out the window of his room.
He had thought about looking out it yesterday, but got too tired and just laid on the couch.
ONLY one chest tube left!!!
Darren was VERY excited about heading off our floor today. We went to the gift shop so our BRAVE HEART WARRIOR could pick out a toy.
The drainage last night and today has been minimal. If it continues through the night I think they will remove Darren's chest tube tomorrow.
Yesterday afternoon Child Life came by with virtual video games. Darren had a lot of fun playing them...until the last few minutes...then he wasn't feeling so good. What a cool toy!
Yesterday Dr. Bove stopped by to see Darren. He is an AMAZING man! We are so grateful to all he has done for Darren!!!
Big brother Trevin joined the other siblings when they came to visit Darren today. He was THRILLED especially when Trevin played video games with him. (Note the REAL clothes Darren is wearing. We are over the hospital gown!)
And as if the day couldn't get any better...Darren's friend Xy came to visit!! The boys were so happy to play videos games together and they brought us wonderful Panera for dinner ❤
There is a small chance Darren's gets his remaining chest tube out tomorrow. It all depends on the volume it is draining. If that is the case and his discharge echo and chest xray look good then Darren could head home Saturday!!! Crazy huh?!! If not then probably Sunday. Of course things change fast so we continue to trust in Gods timing.
Tonight Darren's last IV failed. I am praying we don't have the need to play another one.
Darren hasn't used his O2 cannula since before his chest tube removal this morning...YAY!!
Darren took a walk and did really well. We played with his new Lightning McQueen car from Aunt Valerie and family. We played with the phones and even got a smile. Then Darren started to not feel well. Poor sweet boy started to cry. He is done and just wants to feel well and be home. He is now on O2 and seems to be feeling better.
Darren had a good night. He is currently NPO with a plan to remove one of his chest tubes, his IJ in his neck, and his pacer wires. Please pray that he is comfortable during the procedure or it is fast.
This morning he has asked Why does heart surgery have to be so painful? Is it illegal to cut someone for surgery? Can I go home?
The cardiologist mentioned today that once the chest tubes are draining only a small amount then they will be removed. The next day a chest x-ray will be done and if no more has built up then we will be discharged.
WOW - so fast!!!
A few minutes ago the nurse practitioner came in saying that the middle (and more painful) chest tube has only drained a little today and will most likely be ready to come out tomorrow. The other chest tube has drained more and most likely will need to be left in for another day.
The plan is to remove the middle chest tube, the IJ in his neck, and his pacer leads tomorrow morning. Apparently he will feel MUCH better after these are gone.
That will leave an IV in his hand and one chest tube on his left side.
Madeline, Rhiana, and Sam stopped by for a visit.
All the kids except Trevin spent time with us today ❤
Darren loved playing video games with Alex!
We got our name sign today!
Darren has started eating a little.
THANK YOU for continuing to PRAY for our boy!
He is sad that he still has pain when he moves - but apparently when the chest tubes start coming out that will help a lot!
He looked so good sitting in a chair - although he only ate a couple of bites.
We just got back from our first walk (and now Darren is napping). We walked to the phones - so much fun as they ring and you can talk with one another! Then Darren wanted to keep walking to the playroom. We only stayed a couple of minutes as he was tired. We took a wheelchair ride back to the room.
2 chest tubes, one heart monitor with 4 leads, 2 IVs, and one boy less than 48 hours post op.
Darren is a BRAVE HEART WARRIOR! ❤
The siblings are on their way up for a visit - can't wait to see my babies!
Darren is doing well this morning. When asked by the nurse his pain level is a 5. We both got a bit more sleep last night. Daddy came by this morning and they built Legos together. Darren is now tired, but looking forward to a visit from his siblings. The plan is to get him walking more today - they are hoping for 3 short walks. He goes back and forth between needing the O2 canula and holding his own on room air.
I am wearing my Hallelujah t-shirt and my mended broken heart necklace today.
Darren had sudden pain about a half hour ago. It has subsided but they are unsure what caused it. It happened to the left side of his chest almost under his arm. They have done a chest xray, drawn labs, and are now doing an echo.
At the time of the pain we were getting ready to be transferred up to the regular peds cardiology floor. Darren was unhooked from most of the machines and then another patient transferred into the PTCU so his transfer was put on hold. The nurses seemed almost to forget him as he was supposed to be gone. And then suddenly he expressed the most pain I have seen him in since his OHS.
UPDATE: All the tests have come back fine. Darren's pain is gone. He once again is being transferred.
6:30am Darren was given tylenol and oxy by mouth and threw up before we had a full dose of either in him.
The doctors rounded at 7:30am
They are pleased with how Darren is doing.
Darren's one request was to eat some applesauce and they gave the okay - crossing my fingers he doesn't throw it up.
The doctors think he is doing well enough that he will be heading up to the regular pediatric cardiology floor later today!
The plan is to remove his catheter and arterial line today and get him on oral medication.
Darren is in good spirits and isn't reporting any pain. He is pretty stoic and just resting in bed watching hospital movies. So far he has watched Cars, Inside Out, Minions, and right now Despicable Me.
Darren just reported pain - they may try oral meds again - praying they stay down!
24 hours ago we were driving to the hospital....and now look at Darren!
It was a bit of a long night...
Darren was hungry and thirsty all night but every time he had a few sips of water (or tried oral tylenol once) he threw up. Just before throwing up he would get hot - thus the cloth he still finds comfort from on his head.
He eventually was given some anti-nausea med and at last count has kept down 7 small sips of water. He is REALLY hoping to eat that applesauce we packed soon!
There was also a tricky dance with Darren's pain. He cried the most pitiful cry at a few different times complaining of chest pain. Oh it just broke my heart :(
When they would up the morphine he would get too sleepy and his blood pressure would drop. He couldn't keep oral medication down. They did give him extra fluids which did seem to help the blood pressure a bit but not the pain...and then at once point new pain meds were ordered and it took ONE AND A HALF HOURS to arrive!! WHAT?!
Darren was also awake quite a bit - but of course he had slept most of the day...I slept two maybe three hours - but who is counting?!
Darren would like the O2 out of his nose, but every time it is removed his O2 levels dip so back on it goes.
We did see a bit of our curious Darren - and in the quietest little whisper he would ask about what the nurse was doing - or what this tube is for - it does this mama's heart good to see her curious boy coming back ❤
Daddy should be arriving soon to visit before he heads to work. Mommy will get a shower (down the hall in a Ronald McDonald room).
I will update after rounds - there already has been talk of moving to the regular cardiac peds level today - although I think that requires doing some of his pain meds by mouth.
Sorry for the rambling - apparently this is what you get when I have only a little sleep.
PRAISE GOD FOR HEALING OUR SON!!!! ❤
We are SOOOOOOO THANKFUL to GOD for a successful surgery!!!! ❤
and for a relatively easy recovery so far (not exactly sure if Darren would call it easy - but all in all it really has been).
Darren did so well and he was so BRAVE as he waited to finish his breathing sprint to prove he was READY to breath on his own!!
Jamma and Gramps stopped by to visit during this exciting time.
Darren was still VERY sleepy, but was able to whisper that he was thirsty....except he can't have anything to drink yet. The nurse used a wet sponge in his mouth but it didn't make him happy.
Then his chest started to hurt....ohh - the sweet boy cried such a pitiful cry - just broke this mama's heart. Thankfully they gave him morphine....but that made him too sleepy and his blood pressure started going too low - oh what a dance the ICU can be!
Darren would really like to drink - so we have now done 4 or 5 sponges filled with water. He has also been complaining about chest pain.
Please pray that we get some sleep tonight and even more importantly that his pain can be managed.
Darren got to the PCTU at 3:15pm. By 4:30pm I was almost crawling out of my skin! I was so worried about him. Darren had been bleeding so they left him intubated. Thankfully when we got to see him at 4:35pm he was resting peacefully. He is in an individual room in the ICU. There isn't a bathroom, but I will have a recliner to sleep in and he has a tv to watch.
At 7pm Darren woke up and started to cry. He tried to grab his tube and shook his head to let us know that he wanted to be extubated. They turned down the vent and some of his sedation. The plan is to extubate at 8pm after shirt change. We turned the Cars movie on and gave him teddy bear to hold. So far he seems pretty comfortable. Only 45 more minutes to go. It was so heart breaking to see him cry 😢
We wore matching t-shirts today. They are U of M Heart Hero shirts.
On the back it gives a definition of Heart Hero:
1. a person to be admired for their courage in the fight against cardiovascular disease; a survivor or caregiver
2. one who supports cardiovascular disease prevention, treatment, education, and research.
3. a health care professional dedicated to bettering the lives of patients with cardiovascular disease
We were told the nurse would come by at 12:40pm for an update.
We were SUPER excited and surprised to see Dr. Bove walk in at 12:50pm!!!
He shook Erik's hand and gave me a hug ❤
THE SURGERY WAS OVER AND WAS A SUCCESS!!
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!
We are so relieved and THANKFUL!!
Dr. Bove addressed the sub-aortic stenosis and replaced the conduit with a larger size. He said Darren did very well and is looking great. Dr. Bove said he hopes we have a lot of energy because Darren will have EVEN more!
Dr. Bove said the conduit looked great and they were only replacing it since they already had his chest open. He expects that future conduit surgeries can be done in the cath. lab. He did hint that at some point the conduit will need to be replaced, but it sounds like many years in the future.
Dr. Bove told us he removed scar tissue around the stenosis. He determined that the stenosis might return if that was all they did so they also divided some muscle tissue in that area. He said there is no longer any stenosis and the flow is really great now. He also reported that Darren is pacing on his own just fine so the electrical system of his heart was not disturbed -- this is is a HUGE answer to prayer as it was a risk operating in that part of the heart. Right now it appears that Darren will NOT need a pacemaker. YAY JESUS!!
THANK YOU FOR ALL YOUR PRAYERS!!
Keep them coming!!
Recovery is a tricky dance with two steps forward and one step back - but our brave heart warrior can do this with God by his side!
We should be able to see Darren in an hour or two - we can't wait!!
Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Darren is now on bypass. He is doing well. We will hear back from the nurse by 12:40pm - unless something comes up and she will call us right away. This part of the surgery should last 2 - 3 hours.
For the LORD is good and his love endures forever; his faithfulness continues through all generations.
Psalm 100:5 NIV
God always knows how to comfort us.
(Picture taken in pre-op) Darren was calm before heading to surgery. He got to play Cars 2 on an x-box 360 and they gave him some versed to help him relax.
We were told the first update would come around 9:30am. By 10:30 I was starting to feel anxious so we asked if there was an update. The nurse came by saying the incision was started at 9:10 and at this point Darren still wasn't on bypass. She said she can see the notes coming out of the OR and all looks normal and what is to be expected. The nurse said recently he was given the medication you are given just before being put on bypass. She will come back and update us once Darren is on bypass.
Thank you for surrounding Darren and our family in prayers.