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.