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!!!