Slow & Steady

Yesterday Andrew had his cardiology followup appointment. His recovery feels slow to us sometimes, but he is moving in the right direction and we are excited about that. Andrew is our one-of-a-kind boy, so we have to be patient and give his body time to adjust to his new blood flow. He showed us after he came home from the hospital as a 5 month old that his body was going to make unexpected adjustments that literally made a way for him to live. Our hope is that God will work the same way in his body now. That his body will make adjustments that will help Andrew sustain higher oxygen levels even with activity. He gets to wait 4 whole months to go back to cardiology! For now, we rejoice in every grin and look to support our boy in his recovery. We are very thankful for all of you and the roll your love and prayers plays in Andrew's recovery.

"You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many."

2 Corinthians  1:11

Overprotective Much?

Well, yes. But in our defense, Andrew is our firstborn and that experience has fostered a hyper-diligence. We're not sorry. 

Andrew's puffy face wasn't any better (or worse) after the past 2 days of extra diuretic dose, so we headed over this morning for a chest X-ray to check out what was going on in there. Thankfully, all looks good! He even got a bonus EKG (he didn't feel like any of this was a bonus) and that also looked good. What a relief! We are so blessed with his cardiologist and his ARNP that are just as careful with our Andrew as we tend to be! 

We will just keep doing what we are doing and go back for our regularly scheduled follow-up visit on Wednesday. His body is still adjusting to big changes in the way his cardiovascular system works, so we will keep staring at him up close and other overprotective parent activities.

Thank you for your ongoing prayers and support. We feel like we couldn't do this alone. Thankfully, that has never been the case anyways.

One Week Home

This cutie boy is chugging along with recovery. He actually slept pretty well last night, just getting up once to use the bathroom and then went right back to sleep - yay! He is moving around more easily and having fewer episodes of 'discomfort' (hard for us to know exactly what is wrong during these times as he insists everything is fine : / ). His incisions also looked like they were moving in the right direction this morning when we took off the dressings - yay again!
Yesterday we did notice he was more puffy in his face, so we called cardiology to check in. We are praying the extra dose of diuretics yesterday and today will get him back on track in that regards as well. Poor kid has to put up with us staring at him directly in the face trying to decide if there's a change or if we are crazy. He puts up with it pretty well.
We are also praying he continues to improve eating and drinking as it tends to bother him to get food/liquids through his feeding tube. It is certainly a challenge to get the recommended amount of fluids in each day. Thank you so much for keeping us in your prayers! It is a great source of encouragement to know we have so many lifting up our sweet boy to our God who loves him so much. We do believe this is part of Andrew's physical healing as well.

Quick Trip

Yesterday morning we noticed that Andrew's sternal incision had opened up a little at the bottom. Then in the evening when changing the dressings on his chest tube sites, we noticed those also looked a little more opened up. That earned us a quick trip over to see the surgical nurse practitioner for her to check. Those areas were already looking better than the pictures we took yesterday, so we will keep following instructions to care for them at home. Yay for not needing to add wound care to the mix!

Andrew was happy to get out of the house anyways. He had total control of the radio / DVD system.

The brick building on the left is Arnold Palmer Hospital & the glass one on the right is Winnie Palmer Hospital. I just think this is such a sweet legacy. Husband & wife hospitals where so many families like us have know the best care we could hope for for our precious children.

Andrew is moving around the house with our help (less & less). He's also eating and drinking better. Still has a way to go to get back to his former activity level and then hopefully beyond. Weaning the one medication has bothered him, but we are also eager to ditch it so we are hoping to find the right balance to keep him moving in the right direction. Thank you all so much for your continued prayers and support! We are so very blessed to have an amazing support system!

Thursday from Home!

 We got to leave the hospital about 3pm this afternoon. Andrew even got to ride up front, which he doesn't usually get to do when both parents are riding.

Excited me with ALL the stuff to go home from our room at the Ronald McDonald House and Andrew's hospital room

Luke and Fiona were ready with the decorations for the homecoming party. How awesome is it to have the three of them home together!

Andrew is happy to be home, but still exhausted. Its so much work for him to even walk around the house, but he did it to go to the bathroom, his room to blare some music, the study to play wii with Daddy and the shower for a careful bathing - his first since Oct 14th. He really didn't want me to restrict it (not get his chest dressings too wet) and he didn't want to get out. I don't blame him! Bed baths do not compare.

My tired guys took a little nap together just before bedtime. It's amazing to have Andrew home just 15 days after his surgery. We've never done anything like this in a normal-ish timeframe! There is still much recovery ahead and Steve & I are stepping up to primary caregiver status. It can be a little nerve racking because now it's up to us to monitor him and get everything right, but we know Andrew is really God's boy and He has yet to fail us.
We will be doing our best to help our sweet boy as he continues to heal incisions from his surgery and chest tube sites, weans off the last of the g-tube sedatives, gets stronger everyday to do daily tasks and keep his fluids/electrolytes in balance with the diuretics. Thank you so much for keeping us in your prayers! We are hoping to get back to our 'regular' life activities and schedules soon, but Andrew is so worth the interruption!!!

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!