Friday, June 18, 2010


So . . . when is he coming home?  This is the question on everyone's minds.  For the past two days, there has been talk of sending him over to an inpatient rehabilitation program.  We had mixed feelings about that idea, because it includes at least 3 hours a day of intensive therapy.  For certain, Henry is not back to where he was, and it may be a long road to regain some of the skills he already had.  But he tires so easily that it seems excessive for him.  Still, I was willing to give it a try if it meant that we would still be able to have all the resources of a hospital surrounding him. 

Until last night, they were weaning him off of his oxygen.  Two nights ago, he only needed a small amount for about an hour.  Last night, he never needed it!!

He is also weaning off of his pain medications.  This is something we can do at home, but I have felt more comfortable being here for it since he has shown signs of withdrawal and they have made changes to the dose accordingly. 

He is also learning how to use the bottle again.  Yesterday, he took three 2 oz bottles over the course of a day!  His ng tube may be in for a while, and we have been told to prepare ourselves to bring him home with his tube. We would be trained to use the pump and reinsert the tube if needed (he's getting the hang of hooking the small, untaped part of the tube with his finger and trying to pull it out).  Again, I know we can do it, but we've had one nurse insert his ng tube into his lung - fortunately an x-ray showed the error before it became a problem.  Without an x-ray, I'm not sure I'd feel comfortable doing it myself!

Today, they have determined that the inpatient rehab program is not the best fit for him.  Their best guess is that he will be here through the weekend and possibly be discharged on Monday.  Henry is probably ready to leave the confines of the hospital . . . It's MOMMY who needs to be weaned!


  1. henry looks GREAT in the pictures - i am so happy to hear that he didn't need oxygen at all last night and they are weaning him off of the oxygen and pain meds. i am sorry to hear that the ng tube was accidentally inserted into his lungs - whitney had an ng tube for 5 months so i became an (unwanted) expert at inserting ng tubes into her tiny little nostrils. if you do have to go home on the ng tube and have any ?s from a mom who has been there (i am not a medical professional - just a mom:) i would be happy to talk. you can email me anytime and i would be happy to give you our phone # if you just want to talk to another mom who has had a baby w/ an ng tube.
    i hope the weekend continues to go as well as last night did for you guys!!!!

  2. He looks so good! Back to normal if he didn't have a tube in his nose and sitting in a hospital crib. Henry, we can't wait to meet you!!

  3. Continuing to pray, Kara! So blessed to see he is healing and planning to be home. I will be praying for your weaning as well. :) There is a certain comfort in that hospital, huh? YOU (and Scott) can do it! YOU WILL BE ABLE to do what needs to be done to care for him at home!

  4. Coming home...oh how wonderful those words must sound to you....and what a miracle. I will continue to pray for his continued progress and that on Monday he is able to go home. What a blessing. May God continue to bless Henry and all of your family.
    God bless you all!

  5. Monday! Wow! I'll be praying for you frin - praying for courage and wisdom and many other things!

  6. Yeah that would be good to get out. I am sure you are nervous. Wysdom had the ng for 9 months. When I first home I was afraid. Our local hospital wanted the tube x rayed each time it came out. So that is what we did. We only had to put it in ourself a couple of times. Just get them to give a couple of spare ngs and carry them with you. What about a home care nurse to assist you for the first little bit? Hugs to you. A good tape job helped us a bit with the tube.

  7. Laura and Sasha, thank you! It gives me hope knowing that so many other parents have successfully figured out the ng tube. He is still getting most of his feedings through it, so it sure seems like we may come home with it this week. We'll see.