Sunday, July 17, 2011


Just gonna give some bullet point updates:

  • Steve came home from the hospital today.  He slowly gained the ability to control his arms and legs on Saturday.  This morning he was able to walk with the help of the nurse.  It is still very exhausting, slow work for him to walk at all.  He is home with a walker, and is only moving from bed to bathroom or chair.  He is very weak, but each day we've seen improvements.  We have no idea what caused this attack on his body.  West Nile Virus testing will be a couple more days before results, but otherwise everything else is coming back negative.  He did have mono a month ago, so maybe his body was still weak from that  and some weird virus got him, we don't know.
  • Matthew is continuing to get a little better every day.  Last night, His left arm got really puffy and he acted like it really hurt him.  The doctors looked at it and ordered an ultrasound.  The ultrasound done last night (about 1 am Sunday morning) was inconclusive, but this morning around 8 am the radiologist requested to re do the ultrasound himself, and found a 2cm clot in his subclavian vein attached to the port and the vein.  His port still functions, the clot is on the other side of the port, maybe best to explain it as "upstream" from the port, but none the less, the 1 week old port must come out.  This means surgery AGAIN for Matthew.  Grr.  The hardest part is now going to be figuring out what kind of venous access to put in.  He is not a PICC candidate because the left arm has a clot and the right arm is where the origional infection was.  He most likely will get a femoral central line or a intrajugular line.  Both have risks, but without venous access, Matthew most likely won't be able to fight off the infection.  He was also started on lovenox to prevent any other clots from happening, and the hemotology doc's want a couple days of that on board, and then off it a couple days before they can do surgery.  Not sure when this surgery will happen.
  • I was able to get out of the hospital and spend some time with the kids and Steve at home.  Chrissy  was able to stay again with Matthew for the afternoon, and I also got a much needed nap.   My parents took the kids back to South Dakota tonight for a week or two, and Steve's mom will stay one more day with Steve, and then we're going to (hopefully) coerce him to come and stay up in the hospital with me for a couple of days so I can keep an eye on him.
Thank you again for everything you are all doing for us.  We have the best support anyone could ask for.  From church family, friends, family and readers of our blog...we are the most blessed!! God is good!


Jen said...

We are continue to send prayers up for your whole family. I find your strength incrediable. I glad that everyone is on the mend. I pray that each day brings more healing and that you are all at home together soon.

Jane said...

Your whole family is amazing Jill. I continue to pray for all of you. I may be in Omaha this week and would like to come up to visit. I will let you know as soon as I know. Please raz Steve for me and give Matthew a hug and kiss for me. Talk with you soon and hang in there, you are doing a great job Jill!!!!!

ANewKindOfPerfect said...

Wow! I am glad that your husband is doing better, I hope they can figure out what it was. That is so scary. As for the access issues with Matthew, they are fears we face as well. I hope they are able to place a port/line somewhere quickly, so he can get better and get home!

The Niemans said...

We are still thinking of all of you and praying for safe travels, peace and healing.

Anonymous said...

Continued prayers for your family from the Hendrixes
Amy, Jeff, Parker & Jordan

Courtney Sensibaugh said...

i would just like to say you are quite the inspiration! there are some people out in this crazy world who wouldn't keep their child after they found out it had special needs. i would just like to say you are a good hearted woman, and you are appreciated!