Well we had made it 4 wks without any day of side effects but today he came home tired and then before bed threw up. It only lasted about 5 minutes but in throw up time that’s like an hr! He recovered fast and is now eating saltines and drinking water. Pray for a calm tummy and restful sleep.
Yesterday was Judah’s 2nd chemo. He got sick, like before, about 20 minutes in and stayed sick for around 30 minutes. He didn’t throw up though so that’s a plus. He was pretty worn out after.
Today he had his PT/OT evaluations. He got scared at first, thinking it was a “hospital” but soon had a blast playing with his new buddies Julie and Katie. He wasn’t shy at all and they got to really see his strengths and weaknesses. Like Ashley, his Speech Therapist, they agree he needs breath support and torso strengthening but he also needs fine and gross motor skills. So he will have speech 1 day a week, pt and ot will both be 2 days a week. Thankfully they were able to avoid Wednesdays and Thursdays so he will have chemo day and day after to just rest.
Next week will be very busy as he will have his first pt Monday then we head straight to Nashville for his neuro ck where they will also remove his stitches. Then his first ot is Tuesday evening. Wednesday is chemo and Friday is ot/pt again. Pray for strength and endurance for the crazy week, a calm and peaceful spirit as we go back to Vanderbilt (as Judah seems to have anxiety about hospitals now) and patience for both Judah and me as we get more accustomed to our new normal.
We packed up and left Nashville this morning about 10:30 and now we’re home! Judah’s curled up on the couch playing with the iPad and seems to be doing great. He hasn’t experienced any nausea yet from the chemo but I’m sure there will be more of that with more treatments. For now we’re all happy and comfy back in our own home.
Want to say thank you to all the wonderful people who came and cleaned our house, mowed our lawn, stocked our fridge, and the hundred other little things y’all have done to love on us! We appreciate you so much!
And an extra special thanks to Josh, Brandi and the Kellett boys for feeding and sheltering us for a whole month. We couldn’t have survived without you!
Thanks to all the prayer warriors out there. Keep praying for Judah. We’ve got a year left of his chemo treatment and there are sure to be some hard times.
We got to go to our home away from home as a family last night for the first time in almost a month! Judah got to take a real bath for the first time in over a month. We had dinner together, watched a movie together, read stories together and then went to bed! It was surreal and lovely and we thanked our precious Jesus for such a sweet return.
This morning we are back at Vandy for Judah’s baseline testing. Basically, they are checking kidney function, platelets/red/white blood cell counts, and liver functions. He will also have his hearing checked as hearing loss is a possible side effect of his chemo.
He wasn’t thrilled to be back here and when the nurses accessed his port, drew blood and injected the medicine for testing he was even less thrilled! It was pretty awful because the medicine had to be injected into a vein, not the port, but most of his easy veins were blown from previous ivs. It took them a good while but after they got it, it was smooth sailing.
Now we are just waiting for the 2hr mark to go get ckd again. Should be done around 1 today.
Judah has been taken back to surgery for his port placement. He was pretty upset when they wheeled him off. Prayers for comfort for Judah and steady handed Drs!
Judah is out of surgery and everything went as planned. He now has his port in place for chemo.
Please pray he bounces back from anesthesia quickly and his recovery continues to make steady progress. We are also hoping to get discharged soon and hope the feeding tube comes out.
Also join us in prayer for a definite plan for his OT/PT/Speech. Right now we don’t know where we are going or how those appts will look. We also need a plan for chemo if we get to come back to Knoxville for his therapy. Pray for clear direction.
We are officially discharged from the hospital!!!
We will be coming back tomorrow for baseline testing and then Wednesday is our first Chemo treatment but after that we get to come home to Knoxville!
We have been working hard for a week to figure out where we could do Judah’s pt/ot/speech and after giving up on Knoxville, I woke this morning and felt the urge to call East Tennessee Children’s Rehabilitation Center and just tell them our story in hopes they would change their minds about speech (it was wait listed for 6 months). They listened and then said that our oncologist could call and talk to them and of they felt Judah’s case was immediate enough they would move him to the top of the list.
So at 10am this morning I told our Case Manager, who told our oncologist, who agreed Andrew some calls and then after hrs of back and forth we got the word that they had agreed to take him!
So now we get to come home and do pt/ot/speech and Chemo in Knoxville! We are so grateful that we will be home, surrounded by our community, friends, support system. Thank you for your prayers. Keep them up. We have a long road and it is really just beginning. God is directing our path and we are finding that though this isn’t the rd we would choose, our sweet Jesus will not abandon us and will continue to go before us and behind us.
Judah got to try some yogurt for the first time since the surgery! Swallow study this afternoon will tell us if he can go back to eating regular food.
Judah passed his swallow study so he gets Chic-Fil-A for dinner tonight! We got to drive him around the hospital in a wagon with no wires and no nurses and he got a couple of stuffed animals from the gift shop. His speech is getting better his strength is growing and he’s in a better mood. Thank you for your continued prayers and praise Jesus for a happy and healing little boy!
What a day this has been! Judah wakes talking, plays hard, eats yogurt, passes his swallow study, gets out of the PICU for a wagon ride, and then comes back to his room for some Chic-Fil-A only to be told he will be moving to the floor soon!!! Praise Jesus for such a wonderful, hope restoring day.
Thank you for being a praying people.
He is now comfortably resting!
Still in the PICU.
Judah had a couple of naps today and during each of them he had a “desat”. That’s med-speak for his blood losing it’s oxygen saturation level. I put it in quotes (and yes I’m a little bitter) because I don’t actually believe either of the occasions were a real loss of oxygen in the blood but false positives inherent to the way this is measured. I made my case to the docs but out of an abundance of caution they took him off the list to move to a normal hospital room and decided to keep him in the PICU. We’ll pester them again tomorrow.
Otherwise he had a fantastic day today. He said a bunch of words today – honey, piglet, owl, brave, stuck, rabbit, bubby, my sister and parasaurolophus. None of them are perfect but the speech therapist says that his lips seem to be functioning well but his tongue’s not all there yet. He was super active, fighting dinosaurs with me (matthew), kicking his feet, sitting up on his own and batting both arms at a balloon. The PT/OT people had him up walking though not really holding his own weight up and he actually interacted willingly with them.
The next 6 days are likely to be frustrating and hectic. Judah’s oncologist wants to start chemo as soon as possible. While his tumor is the lowest grade and slow growing, it’s location means that any growth could have potential long term complications. So chemo starts Wednesday. Monday morning he’ll have his port put in (yes, another surgery with anesthesia), Tuesday he’ll have a bevy of tests to get some baselines before he starts chemo. Wednesday he gets the first treatment, followed every Wednesday for 10 weeks, then a two week break, then 4 weeks on and 1 off for a year.
Our problem is therapy. We had hoped they would be able to work something out were he could get pretty intensive outpatient therapy at Vandy but it’s not going to be ideal. For one they don’t have speech therapy so we’d have to find some place else for that. Second they would be wedging him in wherever there are openings in whomever’s schedule had an opening so there would be no routine or chance for a therapist to build report with him. It would be a different therapist at a different time every day for weeks and probably only an hour a day. There are other therapy centers that offer all three types, O/P/S, but they don’t take insurance and while their rates are lower than places that do take insurance we’d still be paying a ton out of pocket for the amount of therapy he needs.
Judah’s becoming more like his old self everyday but still needs lots of prayer. Prayer for continued healing, prayer for him to have patience for the dozens of people poking and prodding him and making him do stuff all day, prayer for a working therapy plan (and a way to pay for it), prayer for yet another surgery, prayer that chemo has few if any side effects and that it is effective in stopping the tumor permanently, prayer to get out of the PICU, prayer to get out of the hospital, prayer that Wendi and I have patience with the docs, nurses, bureaucracy and insurance companies and prayers for a long road ahead.
Last night was a long night. Judah has been having a lot of breakthrough pain and its keeping him awake and grouchy. It would make me the same way. He trying so hard to be brave and we are very proud of him.
He was approved to move to the hem/oc side of the floor yesterday but there weren’t any beds and as of this morning, there still aren’t any. We are so ready to get all these wires off and have more freedom.
Prayers are needed for:
-Moving to the hem/oc floor
-Continued healing of swallowing mechanism (we are hoping he can pass a swallow study before discharge so he doesn’t have to go home with a feeding tube)
-Continued healing of connection between what he knows and what he can say
-Healing of speech
-Bravery and strength during PT/OT
Well the surgery went great! Judah is on his way up from recovery now and will probably be in the PICU through the night. Cross your fingers that all goes well and we can move to the floor tomorrow!
And on another note, Matthew went to a barber shop and got his head shaved today to match Judah. He walked into the barber and asked him to shave his head and the barber said, “why would you do that?” So Matthew politely told him that his son was having brain surgery and his head would be shaved when he got out so he was going to match it. The barber, who felt terrible, said, “open mouth insert foot.” HAHA!
He looks so different but his head is actually really well shaped for a bald head, :)Judah thinks Daddy’s head has a funny feeling!