Lots Of Sitting Around, But Getting Better

The little guy still can't stand on his own or walk, but he is getting visibly more stable by the day.

Water weight is gone, YAY!, but he still has a good deal of pain in his feet which keeps him up a couple of times per night. This is a huge improvement compared to five and six times a night earlier. (All last week and earlier this week, it was brutal getting up every two hours.) 

His blood pressure is starting to stabilize, but is still a bit high. We take his BP five times a day and will call the office Friday to see if we need to increase his medicine. He's not taking the Actutane currently, I think we will start back up on Monday. Not sure if this will delay his treatment, since per the study he's too take the Actutane 14 days prior to admission. We have another appointment on Monday and I'm sure we'll find out more. I think we need another week plus to recoup, to start back up in 11 days, yikes. 

Also, the appetite stimulant he takes is working! Jack wanted to go to IHOP this morning for breakfast, which he chowed down like a super star.

So, fingers crossed those muscles start rebuilding. He's pretty skinny again now that he's lost all the water weight and then some being in the hospital with no appetite.

Today we're thankful for:
- Jack eating and hopefully start to gain some weight back.
- Chase, what a kid he is getting up at 4:15am to detasseling corn. It's his first job, not the easiest, but he''s sticking with it. He said he might even do it again next year. Wow!
- going on drives with Jack. Since he can't walk around and be outside, we hop in the car and go for a drive. We've explored a lot of the city. Lincoln is getting a bit boring, I told him we should go some where cool. I was joking and said maybe we'll drive to Colorado and up to Pikes Peak. He was all about that! Too bad it's 8 hours away!
- Jack's eyes. Crazy how much his eyes and a small smile can say speak to your heart. 

Water Weight Is Slowly Coming Off

Jack is losing the extra water weight which is good. His belly, thighs and feet are still swollen but are slowly getting better. 

He's eating really well, so hopefully he's putting on some healthy weight too. 

He had a doctor appointment today and his blood labs and urine sample looked good. 

His blood pressure was very high however, probably due to water retention, so he got a pill for that. 

Unfortunately he still can't stand or walk on his own. I think once he gets rid of the water and gets a little bit stronger we'll be able to take a better look into that. 

Until then the orders are to take it easy, eat and mind the fevers. 

Friday Update

Jack is feeling a little better, but not much. He had a doctor appointment on Thursday; labs came back fine, doctor wants to keep a close eye on his fluid retention and input and output of liquids. He has only lost a half of a pound since leaving the hospital on Tuesday.

We have another appointment (follow up to the follow up appointment) on Monday.

 

Jack's belly, legs and feet are still really swollen and his joint pain is still hanging around. He's still not able to walk. Two more medicines have been added to his list to help with the pain. His seems happy as long as he doesn't have to move. 

Our doctor called this afternoon to check on the little dude. If his swelling increases or he can't go to the bathroom, we're to call Children's over the weekend. Fingers crossed no trip back up to Omaha. 

No big plans for the weekend, I hope he'll be able to walk...... well I'd just be happy if he could stand without wobbly legs and not cry. Poor little dude. 

Tuesday

We're finally home! Jack was released this afternoon from the hospital and is glad to be home. I'm pretty stoked myself and I think Tibor and Chase missed us too. Jack is retaining a lot of fluid still, weighing in at 50 lbs when he left today, he looks a like a little chipmunk. I foresee lots of trips to the bathroom in the next few days. (He weighs about 40lbs.) 

One of the side-effectss of the Immunotherapy is joint pain and swelling. Jack is pretty stiff and can barely walk, or maybe I should say can't walk. He can shuffle a few steps, but then we need to carefully pick him up and carry him. (And weighing in a 50 lbs, he's no feather. :)) 

We have a follow up appointment on Thursday afternoon for labs and to see the doctor. I think we'll talk about tweaking the next round of treatment. Last few days of kidney stress and fancy medical names like actute kidney failure was a bit stressful to hear. Those kidneys were mad as hell and my vote is not to irritate them again. The part of the kidneys that were injured was luckily a part that can heal itself and isn't permeant. 

So, slow and steady for the rest of the week for Jack. The only medicine Jack is allowed to take is Tylenol. He starts taking his Acutane medicine tonight, so we'll expect the dry skin and chapped lips next week. He still has a week or so before we start injections, and back to the hospital August 11th for a week of anti-body treatment. Not even going to think about going back, only R&R on our minds for now. 

Thankful for:

- Jack being released today

- Chase and Tibor decorated the house for us with welcome home balloons, confetti, signs and streamers. It looks like a party in our house. 

- no permeant kidney damage 

- and thank you to everyone who keeps Jack in your thoughts and prayers. It was a tough 8 days in the hospital. Well, more like 13 days. We only had a short recoup weekend (the weekend before last) before having to start this leg of treatment. 

Doing Better Tonight

It was a long day for Jack and Sarah today, again, but it looks like the night is ending on an encouraging note. 

The kidneys and bladder ultrasound (which they took last night at midnight) turned out to be OK. 

Jack was receiving maintenance fluids all day today and drinking well, but not much was going to his bladder. We're still not sure why, but apparently that is one of the rarer side effects of immunotherapy-- fluid retention. 

So he was looking all swollen and plump from retaining all that water. 

This evening he received some medication, I'm not sure what it's called, but it sends a signal to his body to get all that fluid to his bladder and shortly after he peed. 

So, hopefully he will get a handle on this retaining business soon. 

Overall he's making progress, last night he needed a catheter, but tonight he's taking care of business all on his own. (TCB as Elvis would say.)

His bones and joints are also extremely stiff and painful, so he can't move much, but he can take Tylenol for it. I'm not sure if it helps but it's something. 

He also got a blood transfusion tonight, his hemoglobin was a bit low. 

He promptly requested a PBJ sandwich. Carbs, sugar, fats and protein, exactly what he needs. 

No vomiting, no diarrhea, so that's something to be thankful for. 

On a side note, the doctor was still there at the hospital at 10:30 at night... I don't know how they do it. 

Monday - no release today

Well, 

Still no pee today, so they're staying in hospital tonight. 

Jack is still retaining a lot of the fluids, rather than getting them into the bladder and passing them. 

Next step is to give him some medicine that will help the body get the fluids into urine and into bladder and see if he can pee then. 

If that doesn't work, it's back to the catheter. 

The teacher at Children's brought Junie B Jones books, -- Jacks favorites, so Sarah reads them and makes him laugh. 

Otherwise he snacks and drinks OK, so hopefully the urinary situation will start resolving itself. 

Sunday - Hopefully They'll Come Home Tomorrow

Well, it's Sunday and Jack and Sarah are still at Children's. 

The kidneys seem to be working fine but the little guy is unable to urinate. He does have a catheter which drains his bladder, so hopefully tomorrow they'll be able to take it out and if he can pee on his own, they should be ready to come home. 

They also have an ultrasound for the kidneys scheduled for tomorrow. 

He was supposed to go to a camp organized by Children's this week, but that won't be happening now. I'm not overly upset, he needs a lot of time to get back in the eating/sleeping sync, but I'm pretty sure Jack will be upset. 

It's been a long week for Sarah and Jack and an even longer weekend, and we'll be so happy to have them back home.