Updates on AVERY. (good news update pg 33 post 489!)

[TruBlu]

I hope Avery is doing well today. How did it go yesterday?

Cameron (DS5) asked about him first thing this morning. We call him our hero!

 

[NHAnn]

Hi friends....
Well they were not able to give Avery his chemo yesterday, they did not have enough safe clearance for the spinal. But the port is still on hold until at least Monday, so things could change by then. MEanwhile, today he is having surgical procedures to remove a couple of drains and biopsy some bumps on his legs. He breating tube will come out today or tomorrow they say.

Meanwhile.....in this Epic called Avery's Anatomy, we had a little episode which we will call Grammie's Great Adventure: Yesterday I started feeling an odd pressure/pulling sensation in my right chest, intensified when I tried to take a deep breathe- about 20 minutes before quitting time, I got a little panicky when it didn't pass. When I got home I just knew something was wrong, called my doctor, they directed me to the hospital's satellite Urgent Walk-in center . DH drove me, DD met us there.

They started all kinds of tests/blood work to rule out heart attack, pulmonary embolism (clot) and stuff. Of assitional concern is the clinical trial medication I am on has potential vascular type side effects. I ended up being transported by ambulance (that was a first!) to the regular ER because they don't have a CT scan at the walk in. Better to go via ambulance , they take you right in anyway!! Fnally the CT scan around 9 diagnosed a pneumothorax, they had missed it on the initial chest X Ray at the walk in care, but the ER doc and the cardiothoracic surgeon bothsaid it was easily missed. It is a partial collapse of the rt lung. . they put in a small more "comfortable" (yea right!) chest tube te purpose is to drain or inflate something something and get theings repaired. I went back to the hosp today to get another X Ray and YAY they took it out. (IT was more sore than it did before they put it in, but it's a differnt sensation! Got no sleep, my leftover Vicodins from 18 months ago apparently are stale or didn't get them started soon enough.

Usually these are caused by trauma of some sort but can occasionally happen spontaneously...yep that's me, Miss Spontanaeity??? Bleeeeehhhhhhh
Does give me renewed awe and inspiration at what Avery is handling........

 

[Mackey Mouse]

Oh Ann...

Yikes.

Hugs to you, I hope you asked the doctor for some more pain pills to have onhand.. just in case. I am glad they took the chest tube out today though. You never know, you never know what is around the corner..

No chemo for Tom either, his counts are not great, but you know what, it is what it is...when the counts are better, they can do chemo. I just want to go somewhere warm and escape..

Please take care of yourself and I am praying no port for Avery....hugs all around.

 

[safetymom]

Ann, you sure have had more than your fair share of medical emergencies. I will keep you both in my prayers.

 

[Jake & Crew]

Ann

This one is for you

Will be praying all weekend that Monday is a good day for the tap for Avery.

I know this is sensitive, but may be time for Boston, it is so close ......my neighbor would not be here today if his doctor from Hasbro (childrens in Providence) did not get him to Boston.

We so want to trust our docs, know they do the best they can but even mine said he would not be offended if I went to Boston for a consult as my case keeps defying the "natural course", he even said he would get me a referral, I am thinking of doing that but due to my last treatment can not be examined until Feb/Mar and the CT last month was good so will decide for sure on 1/24 when I go back to the oncologist.

Will pray for Averyand his parents!

 

[Mackey Mouse]

I forget what Ann told us was the hospital. If it is the Hitchcock one affiliated with Dartmouth that is a very good hospital too.

 

[NHAnn]

Yes, he is at CHaD (the Children's Hospital at Dartmouth), at the Dartmouth Hitchcock Medical Center in Hanover NH, it is a very highly regarded teaching hospital, generally on par with the Boston facilities. I am not even sure if he could even be taken to Boston at this point. I do think though, just from my own knowledge - with my mom and having grown up in the Boston suburbs, that the Boston facilities should be taken advantage of, for a consult at least. I just really haven't found it the right time to mention/ask/suggest to DS and DIL that it would be a good idea.

Avery had some surgery yesterday to remove a couple of tubes but then put in a couple more drainage tubes for the abcesses in his back/trunk area. Also they biopsied one of a few "bumps" on his leg....not sur ewhat that is all about. On the good news front, they should be taking out his breathing tube today. Lately I feel like just saying: "Can we just let him BE for a few days?? Let him rest, heal? " Quit poking and cutting and so forth, everything one team does causes a problem for another team, effects of one med does something else and another specialty comes in and addresses that and blames somethign off the wall.....
uuugghhh

I myself am feeling better this morning, had a very good night's sleep after none the night before!

 

[MerryPoppins]

Just wanted you to know that even when I don't post, I'm following Avery's progress. I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.

Hang in there. Kids are resilient. He's a fighter and he'll make it through all this just fine. I have faith. We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!

 

[annrae]

Just wanted you to know that even when I don't post, I'm following Avery's progress. I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.

Hang in there. Kids are resilient. He's a fighter and he'll make it through all this just fine. I have faith. We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!

I heard on the news today about the ice storm you are experiencing. I, myself, would much rather have a good old fashioned snow storm rather than the awful ice. We were without power for 14 days at one time in Upstate New York and it is amazing how many times I wanted to turn the lights on! Anything, just anything, is ok I guess relative to what Avery and Avery's family is going through at this time. It seems to be a vicious circle for them. As you say, children are resilient and Avery is definitely a fighter which sometimes is half the battle. Hugs to everyone Barbara

 

[kathleena]

Many hugs to Ann and Avery!!!!!!

Praying for a tap before Monday.........

 

[TruBlu]

What a strong little boy. Does he understand why they are doing all these things to him, or is he feeling too bad to care? It just breaks my heart.

I agree. I wish they would give him a couple of days to bounce back some.


Still praying!

Hugs to you too Ann. I'm glad you are feeling a little better.

 

[Belle1997]

Wow hope you are feeling better NHAnn. That was just scary. My heart goes out for little Avery. Spinal taps are nasty I have had two and face another one in a week. Poor little guy feeling bad already and having all the needed procedures is just is awful. Glad to hear the breathing tube is coming out. Praying that no more complications arise. I read this every day and pray for God's grace to your whole family through this. Thanks for keeping us updated.

 

[Mackey Mouse]

God love him, he has been through so much..

Well, heading to church and he will be on my prayer list, you too Ann, please take care of yourself.

I do hear about the poking and proding....sweet baby...I am sure they are doing what is the very best in care for him.. Maybe a consult if you can get him stable, but I have learned with daughters and sons, sometimes you have to wait for that best time....I hear ya Ann..

Hope you have a restful day today and that Avery does well also..

 

[NHAnn]

Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!!

 

[Blueeyes101817]

Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!!

thats great news!

 

[MerryPoppins]

Awww, that's wonderful news. Sounds like a great day for all of them.

 

[Jake & Crew]

Love the good days, will just keep praying Avery gets more and more of them!

Understand you are in a tricky spot about the consult question, will pray for that too.

 

[Belle1997]

Oh great news. A happy milestone

 

[Mackey Mouse]

Woohoo.. way to go Avery... I can only imagine what a relief it is for the parents, grandparents and of course Avery to get that tube out..

Keeping him in my prayers..

 

[NHAnn]

Today, the catheter came out....and now just a couple of drainage tubes for what's left of abcessed areas in his back! They NOW plan to give him a few days to rest, and restart chemo Thursday. Because he is less sedated and less narcotic meds with the breathing tube out, he is really "with it" for the first time in a month. This is causing him some anxiety, all these docs and nurses and techs who "know him" after caring for his the last month have been coming in to say hi to the alert Avery and he's a little overwhelmed. Also he is having some nausea due to getting off the narcotics but it is hoped that the nausea will abate and his emotions will smooth out as well.