Wednesday, January 23, 2013

First day on the floor

Well, we finished our first day on the floor and it was great! I love being here and having goals that will get us closer to HOME! It is a lot busier for me, as the parent, since they really encourage parental care for more things...so we are more comfortable when we go home.  All that is good with me!  I love taking care of my baby :)

There are a few things we are working on with Joshua now that we are out of ICU.  First, getting his heart rhythms under control.  The cardiologists are hoping the irregular rhythms he has been having was just due to the stress the heart under went during the surgery and that it might not be an issue anymore.  They are going to try taking him off some of the medications, since the risks they pose are not worth risking if the rhythms have corrected.  We will watch him over the next few days to see if any of the irregular rhythms occur.  If they do, they will try some other less-risky meds.  This may mean a trip back to the ICU in case his heart does not agree with the meds.  They will need to have a nurse to watch very carefully.  Hopefully, he does well withOUT medication, so we can avoid that detour.

Another thing we are working on are feeding.  We have been working with a speech therapist to help him.  We will be doing a swallow study tomorrow to hopefully get a better idea of what he can and can't do right now and what we need to work on.  We also need to figure out why his glucose levels drop to a scary level when we try to feed him over an hour instead of continuous feeds.  Hopefully more answers for that tomorrow :)

3 comments:

  1. Thanks for the updates! How did his swallow study go? I hope that his meds wean is a smooth ride with no more bumps!

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  2. I know Steph is planning on writing more about his swallow study, but to sum it up, he failed it miserably. He has an NJ tube and will have another swallow test in a few weeks. He aspirated a ton during his last test. :(

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  3. Oh rats. I hated swallow studies because I always had such high hopes going in and then my hopes would be dashed! Give Joshua some good time at home and relax and be a baby and hopefully he will regain his strength quickly and have a little more success next time. We feel your pain. Grant was 100% NPO and fed by NJ for 10 months before we ever got to move it to an NG. We became experts and taping that tube and placing it so little hands couldn't grab it since a tube replacement for us meant an Immediate 4 hour drive and fear of cardiac arrest since Grant liked to pull that trick when his tube was replaced. Use the chopsticks we sent you for positive oral stimulation and do as much chest to chest modified tummy time as you can. That will help him to develop the muscle control he needs for swallowing again. Hugs!

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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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