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On 11/7/2020 at 12:30 AM, Condessa said:

The best moment was when he moved his knee for the three doctors who came to see him and they all made a kind of spontaneous happy exclamation noise—and then he finally relaxed and let go of his fear as they told him how great that was and he saw how happy they all were.  And since then he is acting more like himself and has bought into this idea that his legs not feeling normal yet really is okay.

I love this so much.

♥♥♥

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My six-year-old son was diagnosed with a tumor in his spine two days ago.  He will be having surgery on Thursday, and will spend at least a week in the hospital afterwards.  Around that point in his r

We got the pathology report back!!! The tumor is a pilocytic astrocytoma, which is pretty benign. We have high hopes that this means he won’t need chemo or radiation therapy, but we won’t know until h

A specialist did an assessment this morning, and he had at least some motor response back in all but one muscle area of his left leg.  And it’s definitely getting stronger—from a twitch up to a little

1 hour ago, prairiewindmomma said:

Dd (who had a brain tumor) attended a day-hospital rehab clinic intensively for a time. We found it helpful because the clinic focused on pediatrics and saw a lot of similar clients compared to outpatient OT coming to us which dealt mostly with rehabbing elderly stroke victims. Most ped hospitals have Ronald McDonald facilities or some sort of inexpensive/free housing for families because it is a fairly common issue.

 

 

Yes, definitely look into Ronald McDonald and other housing if your son does out patient therapy at the children’s hospital. We found the families had to live a certain number of miles away to qualify, so it is possible being an hour away might not qualify, unfortunately.

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On 11/10/2020 at 4:25 PM, *LC said:

I have been through an inpatient PT clinic like you describe with a family member, and I would usually highly recommend this option. However, with COVID restrictions I would want nearly a written guarantee that you or your husband or both could stay with him 24/7. . . I am very lax compared to many on these boards about what I allow, and there is no way I would leave a young(ish) child with possible mobility issues alone in the hospital overnight. Just from standpoint of the ability to get help when needed, he would be at too much of a disadvantage.

There’s no way we would ever consider leaving our six-year-old alone at some place.  That has never been on the table.

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He is definitely going to the two-week physical therapy rehab clinic, and they are talking about sending him on Friday.  We’ll be driving him to the city about 4.5 hours south of here (or normally that long; we are going to have to stop for lots of breaks and he is going to have to lie down across the seats for most of the trip).  Apparently he has to be checked out of the hospital and into the clinic within one business day, because if he spends a night out of a facility the insurance will balk at paying for the inpatient clinic under the argument that he clearly doesn’t need inpatient care.  So the plan is to discharge him very early so we have time to take things slowly and still get him in before the end of the business day.  We’re going to pick up our other bio kids from the cousins’ house near here and all drive down together so we can have a bit of family time together, then fly the three bigger kids to go stay with my parents from there.  Our foster girls are continuing to stay with friends at home.

Dh’s work has been great.  His boss is picking through all their cases to take everything that has to be done in person and give dh everything that can be done remotely.  So while we’re down there dh will work remotely during the day while I’m with Ri, and then we’ll switch for the late afternoon/evening, and take turns with him at night.

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33 minutes ago, Condessa said:

There’s no way we would ever consider leaving our six-year-old alone at some place.  That has never been on the table.

I understand that, and I didn’t mean to upset you. Unfortunately, this year has brought changes to policies in many health-care settings that would have never been considered a year ago. You just need to verify the details of who/what/when/where is allowed before your son is transferred to a different facility. You need to make sure the facility’s policies agree with your expectations before your son is admitted and insurance has kicked in.

Sounds like you have a well-thought out plan, praying that everything goes smoothly on Friday and for a full recovery for your son.

Edited by *LC
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10 hours ago, Condessa said:

He is definitely going to the two-week physical therapy rehab clinic, and they are talking about sending him on Friday.  We’ll be driving him to the city about 4.5 hours south of here (or normally that long; we are going to have to stop for lots of breaks and he is going to have to lie down across the seats for most of the trip).  Apparently he has to be checked out of the hospital and into the clinic within one business day, because if he spends a night out of a facility the insurance will balk at paying for the inpatient clinic under the argument that he clearly doesn’t need inpatient care.  So the plan is to discharge him very early so we have time to take things slowly and still get him in before the end of the business day.  We’re going to pick up our other bio kids from the cousins’ house near here and all drive down together so we can have a bit of family time together, then fly the three bigger kids to go stay with my parents from there.  Our foster girls are continuing to stay with friends at home.

Dh’s work has been great.  His boss is picking through all their cases to take everything that has to be done in person and give dh everything that can be done remotely.  So while we’re down there dh will work remotely during the day while I’m with Ri, and then we’ll switch for the late afternoon/evening, and take turns with him at night.

You can ask if your insurance will cover ambulance transport.  Mobility issues count for medical necessity, and it would be more comfortable for him to lie down and watch a movie during the long ride. 

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We aren’t down at the rehab clinic yet.  We were told late in the day on Thursday that they wouldn’t have a bed available for him until Monday, so that’s when we’ll be driving down.  He is making lots of progress on his stamina for sitting up and his pain is down a ton, so maybe making the drive a few days later will be better for him anyways.  Our childcare arrangements for our other bio kids were up on Friday morning, though, so we are taking turns being back with them at home (just over an hour from the hospital).  We’ve also had our foster girls back home some, but not as much—they can’t be with us when we go over to switch, as our state is locking down again and DHS doesn’t want foster kids crossing state lines.  I think it’s good for the other six to get in some parent time this weekend.

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Thanks for the updates.  The Fostering rules plus covid really do make things harder.    I remember the Fostering days.

So glad you are seeing improvement.  Sounds like he will get even more out of the rehab just by being stronger and having less pain when he gets there.

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We got the pathology report back!!! The tumor is a pilocytic astrocytoma, which is pretty benign. We have high hopes that this means he won’t need chemo or radiation therapy, but we won’t know until his next MRI in three weeks.
 

We made it down here okay, and Ri met his therapists and was evaluated by them.  Tomorrow the work begins.

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Ri is working hard and making progress every day.  He loves the physical therapy.  Occupational therapy, not so much.  In his little free time, he is enjoying exploring all the public areas of this large hospital, as he was stuck only on the pediatrics floor of the last one.  He zooms all over the place in his little wheelchair, often wearing his Flash superhero costume, and is beginning to have people who recognize him stopping to chat with him all over the hospital.

We are concerned about his surgery incision site, which was kind of red and puffy after the long drive down here, and is now displaying signs of infection.  They started him on an antibiotic for it the night before last, so hopefully it will improve soon.

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So happy to hear he is making progress.   I am sure the staff there love him.   

Those infections are a bit worrisome.  My daughter is in right now to see the surgeon for an infection after her appendectomy.....and that is very minor.

Keep us posted on him.  How are you and the rest of the family holding up?  It is so tiring.

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On 11/16/2020 at 8:30 PM, Condessa said:

We got the pathology report back!!! The tumor is a pilocytic astrocytoma, which is pretty benign. We have high hopes that this means he won’t need chemo or radiation therapy, but we won’t know until his next MRI in three weeks.
 

We made it down here okay, and Ri met his therapists and was evaluated by them.  Tomorrow the work begins.

What fantastic news!  I've been lurking and not posting much, but you and your family have been on my mind.  I hope the next two weeks go well! 

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