Tessa update #3

Posted on May 24, 2015

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The last few days have been a lot of just waiting and watching, though there has been a few adventures.

On Friday we were moved to a new room and were put under isolation protocol, which meant everyone had to put on gown and gloves and mask before entering. It also meant that Valencia was not allowed to come in the room, which gets really tricky when she is at the hospital with us, and not with another family member. Well after about 7 hours they told us there had been a miscommunication between the nurses and the doctors on our team, and that we DIDN’T need to be in isolation. They gave us a $10 Starbucks gift card and apologized profusely. The upside is that we get to stay in this (bigger, with huge windows) room until another patient needs to be in isolation.

Saturday’s adventure was an outing with Valencia at Pike Place Market and the Seattle Aquarium (tickets complimentary of Seattle Children’s Hospital). Valencia went crazy over the huge fish tank wall, and getting to touch sea creatures in the tide pool exhibit. It was SOOO good to have some time together as a family for the first time in 8 days, though of course our outing was incomplete without our sweet little Tess with us. She had a very attentive attendant at the hospital as Claire’s mother was able to spend the afternoon with her.

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Small signs of improvement

Your biggest question is probably, “What about Tessa’s legs?! Has she been able to move them yet?” The good news is YES, in the past few days we have seen some small movements. When her IV needed re-done and was put in her leg the nurse said she Tessa had a significant pull away from the puncture. Also when a sensor that was taped to her foot was removed she seemed to move her leg slightly. Pain is a good test of whether nero-paths are still intact and so we hope that these are good signs in regards to recovery of muscle use.

Since then Tessa has also responded to smaller stimulations and actually moved her leg when we were weighing her!(video) She seems to be able to use more of her lower core muscles as well, since she just started arching her back again, as well as rolling onto her side—neither of which she could do a few days ago.

Other random things

John seems to have aggravated a cornea abrasion. Luckily while we were seeing a pediatric optometrist to verify Tessa’s eyes were fine (as they are a big part of the nervous system), the  doctor was willing to take a look at John’s eye which had in the span of 24 hours become highly irritated and light sensitive. Tessa’s eyes were fine, however John’s needed some help so we got some anti bacterial cream and we put on a patch to help with the light sensitivity he was experiencing.

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A urologist also wanted to make sure that Tessa was able to fully push out all her urine so as to prevent bladder and kidney infections. There was the concern that perhaps the nerves necessary for pushing out urine might be effected. Thankfully she passed the test with flying colors and her profuse screams at having a catheter also encouraged us to know that she could in fact feel that area of her body.

The next few days

Because Tessa made a few small movements, the doctors have decided to continue with steroids, though she has now started taking them orally rather than through an IV, which means she finally got her IV out after 9 days! And they said that she doesn’t need to be on constant monitors (only at night). That means she no longer has a zillion wires connected to her. Yay! If we continue to see small (or big!) progress we will continue with oral steroids tapering them off slowly. If she plateaus or goes backwards then we would start to do IVIG. Docs said we should expect to be here at least one more week (ugh…..getting pretty tired of hospital life). However, we are SO THANKFUL for all the little movements that she has made, we are thankful for family nearby to help with Valencia, we are thankful to be at an amazing hospital, and most of all we are thankful that even though the future is always unknown, we have good reason to think that our little girl will be with us for many years to come!

The future

We continue to be at peace, though there are moments where anxiety and fear come rolling in. We have no idea what this all means for our return to Kenya. We pray we are able to return, but are not yet in a place to start thinking about that yet.

We are hopeful that our little Tess will one day walk and run around after her sister, and all the while aware that that may not be the case. Only time will tell. The doctors can not give any definitive prognosis on her future mobility. Right now the inflammation is slowly going down, which will enable many of the nerves in her spinal cord to start working again. What happens with Transverse Myelitis is that some of the nerves remain damaged even after the inflammation is gone. Usually some of the nerves will be repaired by the body over the course of months, even up to 2 years. Often, though, some nerves are permanently damaged and are never repaired. There is no way for doctors to know how much will be repaired in the future and what damage is permanent. That means, we will likely be waiting for a LONG TIME to know what the outcome of this whole thing will be.

Thanks for all your prayers we are so thankful for the outpouring of prayers and encouragement. So many folks have been asking how they can help as well. Here are a few ideas

  • Cafeteria food is OK, but not great, and parents have to pay for their own food here since we are not patients. But we have fallen in love with a local place a 2 minute drive away called VeggieGrill and you can buy gift cards online at http://www.veggiegrill.com
  • There is also a starbucks in the hospital here that we are making use of, and would love starbucks gift cards available at www.starbucks.com
  • Claire also would love an afternoon at a spa, and there is an inSpa near by. Gift cards can be purchased at inspa.com

We are in contact with the financial assistance office of Children’s and are looking at options there for when the bills start rolling in. We will keep you posted as we think of things that might be helpful.

BUT most of all we are just thankful for your prayers and encouragement. Even though many of you are far away, we have felt surrounded by love and support. God has used you to encourage us and remind us that we are not forgotten or alone in this.

We hope that you will understand that we are not really responding to many of your emails individually. We are really thankful for all of them and would love to respond to them all but we just cannot do it. Please know they are really appreciated!

Love the Holtzes

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