A Nightmare

[Drama Llama]

Sorry for the double post.  

 

Edited November 6, 2020 by BaseballandHockey

[Ottakee]

Continued prayers for him and your whole family.   

I grew, the rules suck.

[El...]

I'm praying. 

[ktgrok]

7 hours ago, Condessa said:

Ri’s surgery was this morning.  The doctor said he got over 90% of the tumor, and possibly all of it.  (Apparently there were some cells left behind that were unclear if they were tumor cells or not).  Ri was screaming and screaming afterwards, even on three different serious pain meds.  He wanted both of us, but the recovery room would not allow it.  It wasn’t until a few hours after he woke up and they had transferred him to the PICU that they made an exception to let us both be with him together for 20 minutes, when he finally stopped screaming.  He can’t move his left leg, and had no sensation in it, but now the feeling is coming back, creeping down from the top.  He can now feel down to a couple of inches below the knee, so hopefully that will continue and motion will follow.  His right leg was numb at first, too, but he could always move it and the feeling came back to it quickly.

Oh honey, that had to be terrible for you! If it helps, it may not have been pain at all, but just how his brain processed the anesthesia. I've seen it in animals at the animal clinics I worked at - some animals were put under anesthesia just for imaging or something, nothing painful at all and would wake up screaming and freaking out as if they were in pain. 

And my own son wakes up similar to that even just from an endoscopy, with no real pain (once he was coherent enough to calm down and speak confirmed no pain). 

[Starr]

Praying for continued healing and prayer for the whole family.

[Soror]

I'm so sorry, continued prayers. We had 2 ER trips this summer for minor things (couldn't get in to the dr b/c of COVID) and it was stressful enough with only 1 parent being allowed. I can't imagine going through all of that. The guidelines are not well thought out to the effects and to how much they will actually help.

[mommyoffive]

Sending healing prayers to him.

[PrincessMommy]

Thank you so much for the update. I hope your son makes a complete recovery.  I'm so sorry the hospital policies made an awful situation even worse.  Poor little guy. 

Hugs.

[Harriet Vane]

Thanks for the updates. Praying.

[Ditto]

Thank you for the updates.   I hope he is doing well this evening/afternoon.    I'm glad the surgery went well.  Continuing to pray.

[cintinative]

Wow, how scary for you all. Praying for his recovery.

 

[Acorn]

Thinking of all of you.

[Drama Llama]

Still praying

[rebcoola]

Thanks for the update.  Still praying for you all.  

[Terabith]

Praying for all of you guys.  

[Pen]

Praying for full healing.

 

[Condessa]

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 wobble when asked to move his foot.  His right leg movement is mostly normal except that his hip is weak, and his knee slightly weakened.  His sensory perception is affected from the hip down on the right and from the armpit down on the left, with nothing registering in his left leg at the levels of pressure used for the assessment—but he does now have some feeling to stronger pressure/tickling. It’s kind of scary still but definitely moving in the right direction, and will hopefully continue to improve.

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.

[Scarlett]

4 minutes ago, Condessa said:

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 wobble when asked to move his foot.  His right leg movement is mostly normal except that his hip is weak, and his knee slightly weakened.  His sensory perception is affected from the hip down on the right and from the armpit down on the left, with nothing registering in his left leg at the levels of pressure used for the assessment—but he does now have some feeling to stronger pressure/tickling. It’s kind of scary still but definitely moving in the right direction, and will hopefully continue to improve.

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.

Wow, what an ordeal.  It sounds so promising though.  Hang in there little momma. 

[Melissa in Australia]

glad he is feeling slightly more relaxed.

huge  Hugs

positive thoughts and  best wishes 

 

[Ottakee]

Thanks for the updates.  Praying for continued improvement.  

[ktgrok]

I realize it isn't the same, but if it helps reassure him, after I gave birth to my 10lb kid I have nerve damage for a bit - he must have compressed/bruised something in my pelvis. I had no sensation to touch on the outside of one leg from the knee to my toe. Was so weird - but it totally went away as the inflammation went down and the nerves recovered. I can't even remember which leg it was now! That he's getting sensation back sounds like the nerves are irritated, not permanently damaged.

[Condessa]

MRI looked good on what they could see, but couldn’t see clearly enough to tell if/how much tumor is left, so we will have to wait for another MRI in a few weeks to know.

[Drama Llama]

4 hours ago, Condessa said:

MRI looked good on what they could see, but couldn’t see clearly enough to tell if/how much tumor is left, so we will have to wait for another MRI in a few weeks to know.

Good MRI's are a wonderful thing.  I hope that when the inflammation goes down and they can see it looks even better.

Still praying for you all.  

[Drama Llama]

I just wanted to check in, and let you know i'm still praying and thinking of you. 

[Terabith]

Me too.  

[mommyoffive]

Sending all my prayers your way.   Thank you for all the updates.  We are thinking of him all the time.

[Melissa in Australia]

hugs

[Frances]

I hope things continue to improve. I’m still thinking if your family and sending positive thoughts for healing and recovery.

[Laura Corin]

Still thinking of your family.

[DawnM]

Continued prayers.   I am sorry about the 1 parent rule.   My son's close friend was in a horrific accident 2 months ago (airlifted, wondering if he was going to make it, etc....), and they allowed both parents in, so I am sorry your hospital didn't do the same.   

[Soror]

Thinking of you.

[Jentrovert]

Thinking of your family.

[MercyA]

2 hours ago, DawnM said:

Continued prayers.   I am sorry about the 1 parent rule.   My son's close friend was in a horrific accident 2 months ago (airlifted, wondering if he was going to make it, etc....), and they allowed both parents in, so I am sorry your hospital didn't do the same.   

Yes, me, too! My nephew had emergency surgery this year, and they were only going to allow my sister in. My BIL said, "My son wants me and I'm coming in" and they didn't stop him. 

A little common sense goes a long way.

Praying here. 

[cintinative]

Continued prayers for your family.  

[Ditto]

Continuing to pray and think of your family. 

[Ditto]

1 hour ago, MercyA said:

A little common sense goes a long way.

 You are so very right. I swear it seems like common sense is becoming a lost art. 

[Condessa]

Baby steps in the right direction.  He is working on his physical therapy, and on sitting up for lengthening periods of time.  They’re talking about a leg brace.  Also, possibly sending him to a sort of physical therapy boot camp inpatient clinic for a week or two when he is ready to be discharged after his surgery recovery, but there isn’t a place like that in this state, so we would need to travel to somewhere where it is available attached to a children’s hospital.  Another option is a program where a physical therapist comes to work with him at our home, but because we live over the border in a super high-restriction state, they said it is unlikely our state would allow that now because of covid.  Us driving an hour to a clinic three to five times a week is another possibility.

[Melissa in Australia]

Thank you for posting an update

Hugs and positive thoughts for your whole family 

[Ottakee]

Thanks for the update.  Covid stinks.   It just makes everything harder.

Are there any good physical therapists in your state that could come in?  I know though that there is risk in that too.

[mommyoffive]

Ugh covid.   I am sorry that it is making it harder.   

Glad he is taking steps in the right direction.   

[Ditto]

I'm relieved and happy he is making positive strides.  As others have said, it just stinks that Covid is making an already stressful situation even worse.  But he is improving that is fantastic and the thing to focus on.  Prayers are continuing.

[mominco]

(((hugs)))

[Condessa]

12 hours ago, Ottakee said:

Thanks for the update.  Covid stinks.   It just makes everything harder.

Are there any good physical therapists in your state that could come in?  I know though that there is risk in that too.

In our own state, we are a million miles from everything.  There are no large towns in our state within four hours’ drive.  But we live only slightly more than an hour from the state capital of our neighboring state, which is where our boy is currently hospitalized.  If we lived in this state where we are now, we could have the in-home therapy sessions, but apparently our home state will not allow it.  

[*LC]

13 minutes ago, Condessa said:

In our own state, we are a million miles from everything.  There are no large towns in our state within four hours’ drive.  But we live only slightly more than an hour from the state capital of our neighboring state, which is where our boy is currently hospitalized.  If we lived in this state where we are now, we could have the in-home therapy sessions, but apparently our home state will not allow it.  

I am glad to hear your son is making progress. I’m sorry what the next step should be isn’t clear.

“Also, possibly sending him to a sort of physical therapy boot camp inpatient clinic for a week or two when he is ready to be discharged after his surgery recovery, but there isn’t a place like that in this state, so we would need to travel to somewhere where it is available attached to a children’s hospital.  Another option is a program where a physical therapist comes to work with him at our home, but because we live over the border in a super high-restriction state, they said it is unlikely our state would allow that now because of covid.  Us driving an hour to a clinic three to five times a week is another possibility”.

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. With my family member it was the right place to be and everything went great until it didn’t one night and one doctor made everything impossible. Thankfully, someone stepped in and an overnight truce was declared with the understanding it would be sorted out in the morning. (This was an adult clinic and I wasn’t spending the night.) By the time I got back in the morning, everything was taken care of exactly the way we wanted and the new doctor had deemed impossible the night before.

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.

With that said, that type of clinic is great for learning to use a brace or other device, because it will be incorporated into everything. It also feels “normal” sooner because others around are also using similar equipment. (Praying that no long term brace or other equipment is needed for your son. It sounds like your son is doing great less than a week after surgery, so I’m praying his recovery continues.

if you end up with out-patient therapy an hour away, could you stay at a hotel in an accessible room for the first week just to see how it goes? I have friends who did that because therapy was too exhausting for the kid to be stuck in car for three hours a days on top of therapy.

on a more positive note, A classmate of one of my young-adult kids had a cancerous spinal tumor removed as a child. It never caused any physical limitations after recovery, and you would never suspect this YA had been a childhood cancer patient is you read the college activity list for this YA. I’m praying that your son’s recovery is as complete and future as bright as this kid.

 

 

 

 

 

 

 

 

 

[prairiewindmomma]

16 hours ago, Condessa said:

Baby steps in the right direction.  He is working on his physical therapy, and on sitting up for lengthening periods of time.  They’re talking about a leg brace.  Also, possibly sending him to a sort of physical therapy boot camp inpatient clinic for a week or two when he is ready to be discharged after his surgery recovery, but there isn’t a place like that in this state, so we would need to travel to somewhere where it is available attached to a children’s hospital.  Another option is a program where a physical therapist comes to work with him at our home, but because we live over the border in a super high-restriction state, they said it is unlikely our state would allow that now because of covid.  Us driving an hour to a clinic three to five times a week is another possibility.

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.

 

 

[prairiewindmomma]

If they are talking leg braces like a leaf spring orthotic to manage foot drop, etc., I also recommend trying to do that at a ped hospital or at a Hanger clinic that does a lot of peds. We had to drive considerable distances, but the clinics were good at scheduling so we could see a full slate of specialists back to back, break for lunch, and then finish up in clinics...

[Alicia64]

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.

♥♥♥

[*LC]

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.

[Condessa]

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.

[Condessa]

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.