CHOP hospital stay #2 - Getting the G-tube

This is Phoebe, stepping in for another update while Charis and Brad are tag-teaming Leo at CHOP.

Leo was finally able to get his G-tube placed today. Leo has been taking bottles and has had a few victories with weight gain, but nothing substantial enough to let Charis and Brad breathe easier. The procedure went really well but the recovery has been a bit painful. Leo was fairly agitated and kept kneeing his brand new tube. Please pray for a good night with adequate pain control for Leo. Charis and Brad said struggling to console him and keep him from aggravating the site was pretty frustrating and emotionally strenuous.

A nutritionist saw Leo today after the procedure and was pleased with his progress at home. The plan is for Leo to continue to take most of his sustenance by mouth and supplement whatever he doesn't drink through tube. The short term goal is to teach Leo to eat more at a time and fewer times a day. Best care scenario, Leo gets extra nutrients from the G-tube and grows bigger and stronger, starts taking more and more by mouth, and eventually doesn't need the G-tube anymore.

While Leo is in Philly, he had a check up with his neurologist. Based on how large his head is compared to his body, she wanted to check to make sure he wasn't retaining fluid in his brain. He'll have an MRI tomorrow before he leaves. His lovely mother fell down the stairs a time or two because her head was big enough to topple her over (thankfully she has grown into it beautifully!) All that to say, the neurology is not exceptionally concerned considering Leo's genetics, but feels like it would be good to check. She also recommended that Leo be seen at a Cerebral Palsy clinic so he can be treated for his constant motion. 

Thank you for all your prayers today! Leo should be discharged tomorrow or Thursday (depending how timely the MRI is tomorrow). While you thank the Lord for His faithfulness thus far, please continue to pray for Brad and Charis as they learn how to use the G-tube and re-live some of the emotions that they went through the last time they were at CHOP. 




Comments

  1. Tina BeamFebruary 11, 2022 at 8:39 AM

    We are continuing to pray for the specific and unspecified requests. May God give them peace, wisdom and uphold them in this time.

    May God uphold Leo, make him strong and use him for amazing things. May God comfort Leo when it isn’t working for comfort from his parents.

    Praying for wisdom with each doctor, nurse and person they come in contact with that God would be glorified and draw those who don’t know Jesus to Him.

    Lastly, may God keep Brad and Charis from discomfort in feeling inadequate for Leo. The days are long and straining. However God chose Leo for them.

    There will be days of frustration, sadness and anger. But be encouraged that doesn’t make you a bad parent or family member. It means your human.

    We continuously pray for this family and for God to work in this situation. For a miracle only He can do.

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