Wednesday (Week 3)

Andrew had a pretty good day. Busy morning with blood work (via his PICC line, so it didn't hurt), echocardiogram, X-ray and got the knots out of his new zipper scar (the stitches dissolve down the scar). He didn't have as much watery eyes/runny nose today.
He wore his Super Andrew cape for his walks in the halls of the cardiac unit. He wasn't too enthusiastic about walking, but he did it. At one point someone said, 'go Superman' to which he replied, I'm Super Tired! LOL! He ate a good breakfast and lunch. This afternoon he even got to get his PICC line removed. All exciting steps in the right direction.
We are so proud of our strong boy! And thankful for our amazing support system! Here's to a good night's sleep, if it's to be had at the hospital.

Tuesday (Week 3)

Andrew did some great eating and drinking today as well as a lot of getting up to go to the bathroom. Today is the first day since his surgery almost 2 weeks ago that he has gone to the toilet - yay! Also, hard work. He did also take a walk in the hallway with PT today, though he wasn't super excited about doing it. Then he rode around the unit in a wheelchair so we could put a little toy snake on all of the computers (and a couple in the candy bowl). Startled a couple nurses and enjoyed the fun joke with all of the staff. Thanks TJ & Lily for supplying the snakes ; ) And Andrew also wore clothes today! So lots of good progress. 

And still some challenges, to be honest. Andrew has a lot of work to do to get back to his pre-surgery strength and endurance. He's still having a weird 'allergy' on and off throughout the day where his eyes water & nose runs like a faucet. His heart rate is still on the high side. He will have some new medications when we go home. One to wean and another for his heart that's not unexpected after this surgery, but hopefully also short term.

Tomorrow they will take a look at his blood work again as well as do another echocardiogram. We are hoping the results will be stellar so we can spring this joint later this week. Andrew is hoping for ASAP, but we are willing to wait if it's what his body needs. 

These experiences sure put into perspective how very valuable our family time is! What a treat it will be for the five of us to be under the same roof together. And sleep in our own beds! Except for Luke, of course, because he has insisted on sleeping on the floor next to Andrew's bed since the week before we came to the hospital. Sweetie boy! If it comes to it, we will just push their beds together : ) We are so thankful for how well our boy has done so far with recovery, thankful for our amazing support here at the hospital and everywhere you all are praying for him. God is good!

Monday (Week 3)

Andrew had a pretty good day. He walked twice today,  about 60ft the second time for his new record. Spent more time in up in the chair and ate at least a little each meal. He hasn't been on oxygen since last night sometime. His white blood count was down a little again this morning, so they are just watching the cultures, which we negative so far this morning.
He seemed to really enjoy getting rid of us for a few hours to hang out with his Machie. We enjoyed spending that time with our Luke and Fiona. As much as we are all ready to be home together, we are also so proud of each other. (Luke told me today how proud of me he was - those kids are too cute.)
So, we are praying his body can continue healing. That whatever needs to resolve will so his WBC would return to normal, that he would continue to get stronger everyday, that he will eat better everyday, etc. We are moving in the right direction and hoping the day to go home will be sooner than later. We are amazed at Andrew's strength and so blessed that he is recovering so well considering his past experiences. We cannot say enough about the doctors, nurses, therapists, even housekeepers that care for our boy here. We are thankful for the many ways God has provided for our boy - making a way for him to live! What a dream come true!

Sunday (Week 3)

It's been a pretty chill day here with Andrew. They tried melatonin with him last night and he did sleep better, though not great. Still, every little bit helps. We are trying to figure out food between using his g-tube and eating by mouth that will agree with him best. His white blood count was back up this morning, so they swabbed his nose to check for viruses - all came back negative. So the next step was getting blood cultures and starting some IV antibiotics while we wait for results.  The IV sedation medication is now off - hopefully for good this time. We were hoping the WBC would just keep trending down, but we are thankful for good care for our boy in what is a small hiccup considering Andrew's history. 

In many other ways, Andrew is doing very well. His morning chest X-rays continue to be good. He's coughing well on his own now. He's down to 1 liter of oxygen. He got a bed bath this afternoon, so he even smells better ; ) Thanks to the iPad, he's pretty well entertained considering the confinement to a hospital room. And the staff here are not only excellent clinicians, they are genuinely caring. All things a parent appreciates in this situation.

On this Sunday, it was impossible not to notice how beautiful it was. Even here at the hospital, starting week 3, it is a beautiful day. God is giving us rest (when we send each other out for it) and encouragement through all of you and the care we are experiencing here at the hospital as well as the Ronald McDonald House. We are so bombarded with the bad things going on in the world. Certainly it's good to be informed, but I would like to give attention to the many people who are choosing to make sacrifices in their lives to provided care for the families here. We are thankful!

Saturday (Week 2)

This morning Andrew laughed. It was awesome. He laughed several times throughout the day at some of his favorite shows. He did some great walking with Physical therapy, probably about 10 ft this morning & then 5-6 ft in the afternoon. He is chatting more like himself. All such good things for our hearts!
He still hasn't really slept more than an hour at once (most often about 15 minutes at a time) in the past couple days. They are going to try some melatonin tonight with the hopes that he can some much needed rest. As you can imagine, it's hard to feel really good on little sleep. His body is also working hard on recovering. He has periods where he gets cold sweats & shakes. His white blood count was a little lower this morning, so we're hoping it continues to trend down. Sill working on taking that last step off of the IV sedation medication.
Good steps forward. Praying he can continue to chug along in the right direction without any major setbacks. It is difficult to see him experience the ups and downs throughout the day. He has been a great trooper through it all and we are very proud of him. We CANNOT wait for him to be well so we can take him home! We CANNOT wait to be home with Luke and Fiona as well. They are being so good with grandparents and we are very proud of them as well!
Thank you so much for your continued prayers. We have such hopes for our boy!

Friday (Week 2)

This cutie sat himself all the way up in bed early this morning to play Mario Brothers. See, he's even holding his head up to play. This is the first he's done this! He was also doing some chatting along with his favorite shows and talking more to us. He did not, however get good sleep last night, opening his eyes at every little disruption. In many ways he is trucking along toward recovery.
We would like to ask for prayers against infection. His white blood count was up this morning and it's clear to us that Andrew is just not feeling well as the morning has gone on. While there are many reasons (lack of sleep, body adjusting to new blood flow, adjusting to weaning certain medications) he might not be feeling well, we are feeling particularly concerned about the WBC elevation. The doctors and nurses are keeping a close eye on him with the intention of addressing any possible infection at the first sign. We are thankful that he is in capable hands here on the CVICU and even more so with our God who has sustained Andrew through so much. Thank you for your continued prayers!

Thursday (Week 2)

Andrew is coming right along with recovery, slowly, but surely. He is still stable, without any major complications. This morning he did a few bed exercises with Physical Therapy and then took a handful of steps to the recliner. His belly is letting us gradually work up to the nutrition he needs through his g-tube. All good things. 

When he woke up this morning and saw me, he reached out and beeped my nose. He didn't smile, but I was so excited he took the effort to tease me. He is currently in the recliner working on his Mario skills. We are trying to take a small step down on his sedation IV medicine; we are praying this is not very disruptive for him and he can continue chugging along toward wellness. We are so proud of this boy! He really is a stud!

I also got to see sweet Baby Mae yesterday evening as she got here with her parents in preparation for her surgery to repair the cleft to her soft palate. Not only is she is all done with surgery now, but she rocked it. Please pray with us that her recovery will go as well as the surgery did. And yes, she flashed that cute grin left and right like she was here to bring us all a little sunshine.

Wednesday morning (Week 2)

Andrew had a tough day yesterday. He just had a hard time cutting back the medicine and then again when we tried a little pediasure. On top of that, he wasn't sleeping. So last night we took another step back. Went up again on the sedative medications and went back up on his oxygen flow rate. This helped him get some much needed sleep! We are so thankful that he hasn't had any big complications; his body was just letting us know that he needs to move a little more slowly right now. A lot has changed in there in the past week. This morning me made a deal that he could watch something on the iPad after we brushed his teeth, but as you can see, he chose to play Mario Brothers instead.This is amazing because Andrew has been very weak and shaky in his upper body! So for now we say hurray for sleep and hurray for Mario Brothers!

Tuesday (Week 2)

Andrew continues his recovery. He has not felt well today as he had a hard time stepping down off the sedatives. He was on them for a good number of days, so it was just a little too difficult to make that last step off. He is doing better now since they restarted the last one to transition a little slower. It is difficult to see him so uncomfortable, but we are very proud of all his effort in spite of this. He got up in the recliner, did a little work with physical therapy and just got back in bed. All of this over about four hours. He is exhausted, but with the busyness of the unit and the discomfort he hasn't had much good sleep.
We are excited he hasn't had any big complications and are praying he can keep getting better each day. We cannot wait to take him home and get back to our family life! What a dream come true that will be! For now we are determined to be here with our sweet, strong boy as he returns to good health. Thank you all so much for your part in this journey. Your prayers and care are a tangible part of this. We are blessed!

Monday Evening (Week 2)

Today has been a hard day in that Andrew does not feel well. He is shaky and weak. He is working hard in the photo above to lift his head and hands to get Mickey Mouse to say the time on Steve's apple watch. He got rid of basically all his tubes with the exception of his PICC line and oxygen. They are stepping down on his sedation, which is also making him jittery. He needed a lot of help, but was able to bear some weight in his legs when he moved from the bed to the recliner this afternoon. These are all great leaps forward. Hard stuff, but he is rocking it. We are praying Andrew can avoid more pleural effusions so he wouldn't need the smaller chest tubes placed. We are also praying he can avoid any infections, or basically any other set backs. We know that ICU is a day by day journey and we are so blessed to have a group of doctors and nurses to help Andrew get better whatever may arise. Please also pray for Andrew's encouragement. He wants to be better and go home now. We know how blessed we are to have such an amazing support in our family and friends. We are thankful for your prayers and care.

Good Morning

Just a quick bonus update to let you all know Andrew has done well overnight. He is still tired, but his body is moving in the right direction for healing. He is just the sweetest, asking 'can I please have a drink of water?' 'can we please go home now?' 'can I feel better now?' Unfortunately, the answer to all these questions is 'not quite yet'. Still, this boy is handling all of this better than we anticipated. We are so proud of him and can't wait until the answer to all his questions is YES!

Sunday

Andrew did beautifully overnight and about 3pm he got his breathing tube removed. So far, he is doing well with that. Right away he said he wanted to wake up and go home. He was happy to check the date on his calendar from home and asked for the time a few times; I think to convince me that is was an acceptable time to wake up (& go home). Without the vent, we will be able to see how his new blood flow is going to work (nerd insert on the importance of taking physics ; ) Also, he hasn't used the pacemaker since about 3:30 yesterday afternoon and has maintained a good heart rhythm.
It was awesome to look at Andrew's eyes and have him look back. His voice is just a whisper now, but what a beautiful sound to have him talk to us after so many days. We are praying his effusions stay at a minimum so he can have his last chest tubes removed in the coming days. Praying he continues to do well without the vent. Praying he keeps a steady recovery so we can give him his wish to go home. I think that's all I have to say. Thank you so much for the prayers and support.

Saturday

Andrew has been slow and steady through the night and this morning. He got rid of a ton of urine and his pleural chest tubes are not very productive at this point. Good things. The plan is little changes today with the hope that he will be ready to loose the breathing tube tomorrow, maybe even the chest tubes if effusions stay away. 

The doctor turned off the ventricle part of the pacemaker and decreased the mA for the atrium part a little while ago and Andrew has tolerated that without difficulty. They will continue to wean down the ventilator as he tolerates with the hopes that he will start taking good breaths on his own. That means they want his sedation enough to keep him asleep, but not too much for him to breathe on his own. Steve and I are trying to rest and eat and drink reasonably : ) but we also want to be here if Andrew wakes up at all.

I do believe Andrew has the most chill room on the unit, possible the whole hospital. There is Jack Johnson playing quietly in the background while Andrew rests peacefully. We have both been here most of the morning, but we have scheduled each other breaks this afternoon. As hard as it is to pull ourselves away, we know it's crazy town to burn out now. When the Hulk, I mean Andrew wakes up, the parent role in this team effort gets much more involved. As hard as all this is, it is such a honor to be his parents. What a high calling!

Slow Your Roll

Today was two steps forward, one step back. We spent a bit of time in the CVICU with Andrew when he was a baby, so we know about how these things can go. It might even appear like we are taking it all in stride, but honestly we are the same parents risking our hearts hoping at each step. It's still such a blow when things don't move along they way we want them too (best case scenario is what we want for EVERYTHING - who wouldn't, right). And yet, God has demonstrated his mercy in Andrew through so many difficult situations. So we are trying to be patient. Trusting God for Andrew's good. Trusting the doctors and nurses to 'listen' to Andrew and move him forward when his body is ready. So thankful for them and all the support we have in all of you.
The details: Andrew's irregular heart rate still needs the pacemaker support. When they tried to scale back the vent, he was not taking big enough breaths on his own. He didn't pee without the catheter, so that went back in this evening and he needs to get some fluids out. Positives: his blood pressure has been stable in spite of all the rhythm ups and downs today. He is starting IV nutrition tonight to help his body heal. He did great getting the two chest tubes out and the other chest tubes are still productive, so having them is a support to him. He is the cutest thing.
My sweet husband has agreed to split the night with me so one of us is there with him in case he starts waking up. He did a few times today and if he needs a dose of parent, we want to be there STAT. Mostly, this is for my peace of mind tonight and Steve is a sweetheart. On that note, I better go to sleep.

Friday Evening

These cuties came over for a visit with us and meet up with child life, who explained heart surgery and hospital things in terms little people can understand. Luke and Fiona have been doing so well and we are very proud of them. They were great little doctors and had a great time with their new dolls and medical bags. They did not see Andrew, but we are anxious for Andrew to progress to the place where they can see their brother.
Today, Andrew did get two of the four chest tubes removed. He had an artery line removed and his urine catheter removed. He did well with all of this. He is still experiencing a bit of irregular rhythm, but his other vitals have remained stable in spite of this. He has tried to wake up a few times, but he's showing us that he's not quite ready to come off the vent. The doctors and nurses are watching him carefully and waiting for Andrew to show us he's ready to move forward. We are trying to be patient, but as you might imagine, we are ready to interact with our boy. Our hearts ache for his healing. Thank you so much for continuing to pray for him and our family!

TGIF...

Again, sorry for the wait for an update. Andrew has been steady through the night and morning. He decided to control his own heart rate about mid-morning. His rhythm is still irregular, but his body is okay with that as his other vitals have remained stable. They do expect his rhythm to get back to regular within a couple weeks. He is trying to wake up, which is not bad, but they are keeping him asleep a little longer. They were getting all his IV medications changed over to his new PICC line so they can take out the direct artery lines soon. Two of his chest tubes will also come out today. He will keep the ones in the pleural spaces for now because he has had some effusions, but this was not a suprise. He does need to wake up a little to take out the breathing tube.
All of this is moving in the right direction, but it will be difficult on Andrew. He shouldn't remember any of this, but it doesn't mean it's not difficult now. Steve and/or I will be with him pretty much all the time now to support him. It is also difficult for us, but we are gearing up to to be there for Andrew. Thank you all so much for your continued prayers. We are literally living off of them right now and looking forward with hope. We will do our best to keep updates regular, but obviously that will take a back seat to meeting Andrew's needs and trying to keep each other in line with rest, food, hydration and so on.

Here's to a Good Night

Andrew had another full day. His job tonight is to rest. After the cath today, his cardiologist said he might be a little bit 'wobbly' today and that's probably a good way to describe this evening. They were able to place a PICC line, so they will have good access for IV meds with the plan to remove his direct artery lines tomorrow. His heart rhythm and blood pressure acted up at about 6:45, so they are using the pacing wires the surgeon placed during surgery & he is currently being paced (the external pacer is telling his heart when and how to contract). His kidneys are rocking it, so they stepped up the volume and had him balanced well when we left. He is stable and being closely and skillfully watched. It is hard to leave our sweet boy, but we know we need to rest.  We are so thankful for the doctors and nurses that are caring for what is most precious to our own hearts. We are so thankful to God that we are even here. Recovery is hard. When Andrew wakes up, we will make sure a parent is always with him to support him. Your prayers are also a very real support in Andrew's healing as well as emotional strength to persevere.

Cath All Done

Andrew is back in the CVICU. The cath went as expected. Andrew has a new stent in his Fontan and one in his left pulmonary artery. Andrew still needs to rest, so he will stay on the vent for about 24 hours. We are praying Andrew will have an uneventful rest of the day and night. Thank you for your ongoing prayers and support! Praying recovery can begin and progress smoothly. That feels like a tall order knowing our boy, but God is big enough so we're asking.

Back in the Cath Lab

Andrew did well overnight. Still asleep and on the vent. He is back in the cardiac cath lab now. Because of his heterotaxy, Andrew's heart is unique. As a result, his Fontan graft is longer and has a curve that is also unique. We knew it was likely that his new Fontan would need a stent to give it more support so it won't get a narrowing or kinked. We expect he will be in the cath lab for a couple hours. One nice thing about doing the cath so soon is that Andrew doesn't have to experience the pre-/post- procedure since he is still out from yesterday's surgery.

Back in the CVICU

Those cute fingers are a bit pinker than they were this morning.

We just got to see our sweet boy. He is back in the CVICU and will stay asleep and intubated through the night. It was a long day of surgery, but no major hiccups. Just a unique boy with a unique Fontan & new valve repair. Thank you so much for praying for Andrew & our family throughout the day. As you might imagine, Steve and I are exhausted. We are going back to the RMH to sleep while Andrew is sleeping too. Please continue to pray for his recovery. Surgery today was a big successful step and now we need to continue that journey as Andrew's body becomes accustomed to his new blood flow.

Andrew's Beautiful Beating Heart

Andrew is off bypass and you can see here, his heart is beating. A beautiful sight for our eyes. It will still be a while before he's out of OR and back on the unit, so we don't expect to get our sneak peek of him for, well a while. Feels like the day the sun stood still, but we are thrilled his repair looked good to the team and his heart is beating again. Thank you so much for your prayers today!

Andrew's Surgeon & Cardiologist

https://youtu.be/dnHZxX9TRTQ

Click the link of you'd like to 'meet' Andrew's cardiologist & surgeon.  Fair warning, there are some surgery clips in the video.

The Big Day

We are back in our room at the RMH. Dizzy was wheeled back to the OR just before 8am. Now we are just waiting and praying. We will be able to get quick little updates as the procedure progresses, we will post as appropriate. Thanks so much for all the love and prayers.

Andrew slept well--until just after 2AM!!

He had a (mostly) cheerful, and long, morning :)

Tech Tuesday Evening

Today has been a little up & down - a reminder of what life is like in the CVICU. Andrew has had some periods of discomfort & anxiety as well as times of laughing at his favorite iPad pastimes. It was so good to see Luke & Fiona for a brief visit along with both Machie & Grammie T this afternoon. Tomorrow the plan is for them to come get Andrew around 7:45am for surgery which will last several hours. While it is hard for us to face this, we are trying to be purposeful about putting our hope in God for Andrew's good. We are blessed with amazing doctors & nurses here that we trust will care for Andrew better than any other team could. We are so encouraged by all your prayers & support - Thank you!

Happy Technology Tuesday

 Daddy helped him through the night

 Found an angry bird pumpkin on our walk around the unit this morning

 Starting to smile again!

Enjoying tons of technology time

Andrew had a tough night. Hard to get comfortable and understandably upset that he wasn't home. In the past hour he has started smiling and laughing at his favorite show/movie clips again. We are all looking forward to a visit from Luke & Fiona this afternoon! Andrew had his pre-op chest X-rays this morning and is off the hook for any other labs/tests for the rest of today! Love you guys! Keep those prayers coming, we are so hopeful that this surgery is going to be a blessing in Andrew's daily life!

Pre-Surgery Cath Day

 Always such a good time in pre-op

 Mario Run to pass some recovery time in bed

Watching a show in the recliner

Today Andrew had a cardiac cath to close some collaterals before his heart surgery coming up on Wednesday. The cath went well and he is enjoying unlimited technology time to pass the recovery time. Four hours laying down, two more hours propped up a little in bed and then finally up in the recliner. He is upset about not going home tonight & not having a set day (soon) that we are going home. All reasonable things to be upset about. He chose Steve as the sleep over parent in his room tonight. Betsy will take the first turn sleeping at the Ronald McDonald House here on campus at Arnold Palmer Hospital. We got to Skype with Luke and Fiona (& my parents) this evening and they were both a trip. Tomorrow we are aiming to have a good, low key day. We appreciate all the prayers and support. Please pray for Andrew's sweet heart, both physically and emotionally during this journey. We are believing that it will all be worth it SOON!

Andrew has a Sister!

We figured that if we were going to use the blog for updates during Andrew's upcoming heart surgery & recovery we had better get up to date a little.  For example, Luke is now five years old.  And they have a sister, Fiona who is three.  Here are some photos to prove it : )