The Goal is Slow and Steady

Hello from the Joneses!  Summer has officially started (that means I had my last day of school year 2019-20 yesterday and oh what a relief it was!  Very challenging 4th quarter led into an anti-climactic last few days of school.  However, we all survived and we still have a lot of hope remaining!  Brian continues to work from home full time.  We are thankful for United Health Group and their flexibility and consideration of Austin's high risk status for Covid-19.

Max is doing amazing!  He has accomplished so much since we've all been home (mid March).  He is potty trained, sleeps through the night (again) and continues to love learning and sharing all his new vocabulary with us!  I can't remember if I've mentioned it before, but it's worth mentioning again.  Before the quarantine, Max would see Austin for only a few hours a day (between when he got home from daycare and Austin's bedtime).  Since quarantine, he has learned to play with Austin, care and worry about him and refer to him as "my baby Austin"!  It has been so heart warming to see him learn to love, care and interact with Austin.  Of course it's not all wine and roses, he has also developed a little more jealousy at times!  We will keep working on that!

 

Austin is also doing great things in so many ways!  The boring stuff...his hemoglobin is staying steady at 10.5 (Dr. Goubeaux wants him between 10 and 11)!  His enteral feeding rate is at 58mL/hr and we will advance to 59mL/hr in the next day or two!  Dr. Kevan just ordered a couple stool labs - occult blood and calprotectin (measures inflammation in his gut).  We should get those back in the next few days.  He is getting stronger, continues to love standing (no steps yet) and his therapists have seen signs that he is starting to "army" crawl.  I have all gates on standby and ready to go up as soon as necessary!  He loves outside, going for walks, swinging and playing catch!  He saw the eye doctor today and everything is mostly unchanged, maybe slightly improved.  Both of his eyes get "lazy" periodically.  He said that as long as it's both, they don't do anything.  As his muscle tone in his eyes improves with age, they should balance each other out.  He also has minor nystagmus (twitching) and has since he was very tiny.  This continues to improve and he seems to be compensating for it very well.  They will dilate and check his prescription in 3 months, but for now we just need to encourage him to wear his glasses!

Now, the exciting news!  We have officially started the taper off TPN (IV nutrition) AGAIN!  (The above picture is of Brian hooking his TPN up to his line.  Part of our bedtime routine.)  This time we are going to take it much slower and watch him closely each step of the way!  Last summer dehydration and lack of weight gain were the reasons for his frequent hospitalizations.  We're doing our best to NOT have a repeat performance!  So, this week his TPN was 1/2 the calories he was on last week.  Next week he will not get any TPN, but he will get normal saline IV fluid.  He will start at 400mL/night for a week, then 250mL/night for a week and then 100mL/night for a week.  As long as he tolerates the taper, we will stick to the plan.  If he starts to show signs that he's not tolerating the reduction in fluid, then we will reevaluate right away.  After the last scheduled fluid, his Broviac line will remain in for 1 month.  If we need to use the line at all, the month starts over.  We just really want to make sure he's ready before we schedule the surgery to remove the line!  All prayers accepted over the next several weeks as we hope for a smooth transition!

Oh gosh...so much for making this short.  I just can't do it!  From our family to yours, we hope you are all well!

Hugs,

Brian, Tara, Max and Austin