Updates: Mom, Money, Andrew’s pain
Picked my mom up today and brought her here. She is currently using a walker and hopes to graduate to a cane by next week. The knee is doing well, but the foot drop has not changed. I’ve heard it could be up to 4 months for that to return to normal, if it returns at all. We’re trying to remain optimistic. She’ll have therapy 3 times a week and will have to do blood work 2 times a week since she is on coumedin (sp?) to prevent blood clots which is a big risk after knee surgery. Overall though, after a rocky start I think she is doing very well right now.
Money, our dog is hanging in pretty well too! The subcutaneous fluids we were supplying for 3 days did not help. Paul took her to the vet 3 days in a row where she stayed all day and received IV fluids. Unfortunately, that didn’t help either. Her levels are still very high and we’ve been told there is really nothing else that can be done. So we wait. And love her all we can. The good news is that she is still feeling pretty good. She’s enjoyed a walk every night, though they’re much shorter than they used to be and she’s still pretty peppy at times. She seems happy and of course we’re hoping she’ll stay that way for a while. We’re going on vacation next week and she is going with us. Can’t ask for more right now and I’m very happy that she’s still feeling so well.
Andrew has not had a major pain episode since I posted about it. That’s certainly good news. Unfortunately he slept till almost noon that morning and now his sleep schedule is all messed up. Last night he was in his room for hours just screaming (for fun). I was ready to go sleep outside! This afternoon he was asleep by 4pm. Wonder what time he’ll wake up. I should get to sleep soon so I can have a few hours in before he wakes. There’s a small chance he’ll sleep till morning. Wouldn’t that be nice!
Thanks to everyone for your kind words of support for all that is happening here right now. It really does help lessen that feeling of being overwhelmed.
My Poor Baby!
My poor baby! So much pain sometimes! This morning I was awakened by a loud bang. By the time I heard the second bang I realized it was Andrew’s head banging against the wall. I jumped out of bed and ran to check on him. Then the screaming and crying and arching and rubbing started. It didn’t last too long this time. Only about 15 minutes. I gave him motrin and some prescription medicine we got from GI that is supposed to help with intestinal spasms. I guess it worked because he’s back to sleep now. But not before putting a dent in the wall with his head. I guess he’ll be staying home from school today.
He had this pain at school on friday. His aid said it was the worst she has seen. I took him for x-rays (our doctors are wonderful and very cautious with Andrew) and they found nothing. Not even constipation, which I was sure they would find! So, back home again with no answers as usual. Always a mystery. His GI doc has speculated that he may be having intestinal spasms or even kinking because the pain seems so severe at times. She even offered to have him admitted for a few days to try to catch him when it happens. We declined since you can never tell when it’s going to happen, and even if you catch him in full pain mode there is no way to get an x-ray without sedation and the moment would be lost.
So, we carry on and use whatever means we can to keep him safe during these “episodes”. We cry with him, take the beating when he lashes out, and lose a few more strands of hair when he gets close enough to pull them out. We medicate him with whatever we think will work at the time and pray for the pain to go away quickly.
These episodes seem to come in spurts. He can go a month or two without a major one, then he’ll go a week or two when he goes through it every day. I wish he could tell us what’s wrong. It’s just not fair.
Our Dog
Paul & Money when she was just a puppy.
While I was waiting for my mom to come out of recovery at the hospital on Friday (see “Mom’s Knee Replacement” post) I received a call from our veterinarian to discuss the blood work from my dog’s appointment the day before. My dog is 13 years old. She is a black lab/dalmation mix and she is such an important part of our family. She has had two knee replacements a couple of years ago or so and has done really well! My husband took her to the vet because she just hasn’t been eating right and has started losing weight. The vet did not have good news.
Her blood levels were “alarming” and they believed she was experiencing kidney failure. I was horrified and still am! She seems like she is doing so well! She’s happy and playful at times and is perky and affectionate. She is a little more tired, and doesn’t eat or drink as much as she had been, but I figured she was just getting older. Kidney failure is not at all what we expected to hear.
Money
I left the hospital with my mom still in recovery. Thank God for my Aunt Jeanne who had just gotten back to the hospital. She would tend to my mom while I found my husband so we could figure out what to do next. They said she needed “intensive care” treatment as soon as possible and we should take her to the hospital. When my husband finally got home I was a mess. I had been crying for some time and sitting on the floor with my girl (her name is “Money” by the way. I didn’t get a vote on the name, but it fits her after all this time.). He was stunned as I was but held it together and took her to the hospital.
He brought her home that night with a treatment regimen. She’s on Pepcid to help reduce acid, she’s on antibiotics for a UTI, and then there’s the “fluid” treatment. We actually have to “push” 1000 cc’s of saline into the scruff of her neck. Yes, I said one thousand! We poke her with a rather large needle and squeeze the IV bag to get the fluid in. I guess this is the canine version of dialisys. When we’re done she has a lump on her neck about the size of a cantelope filled with saline. Not a pleasant experience for any of us.
Money & Cash watch the birds.
Yesterday was our first attempt to do this. It was going well at first, but then she jumped up and the needle popped out. It was devastating because now we’d have to stick her again to finish the treatment. My husband did it but she was so upset by then that we couldn’t finish. For the rest of the night she wouldn’t go anywhere near Paul. Even this morning she isn’t trusting him completely. It breaks my heart to see her act like this. Paul is the one person she has trusted completely for all of her life, and to see that relationship suffer now, at this point of her life is just sad.
I called the vet to see if there were any other options. “No.” We have to do it! I feel so bad about this. If we don’t give her all of this fluid then the toxins will fill her body and she will feel very ill. They don’t know if this will prolong her life any, but it will make her feel better. I sure hope this goes better tonight. It’s killing my husband to have to do this, but he knows we have to. I’m going to try to be the one to stick her tonight so he can be the good guy. I’m actually pretty weak when it comes to needles, but I have to try.
Money with her baby ducks. She was such a good mom!
We can’t bear the thought of losing our girl. I know it’s inevitable but she doesn’t even seem sick right now. We’re certainly thankful for that. This is not going to be easy.
My "baby girl".
Mom’s Knee Replacement
What a weekend! My mom had knee replacement surgery on Friday. She is still in the hospital and it doesn’t seem that things are going as well as we had hoped. She is a nurse and still works full time. She works in Hospice and loves patient care. It takes a special kind of person to do hospice and she is definitely one of those people. She is close to retirement, but can’t imagine not doing patient care, so is in no hurry to retire. She’s been in pain for years and the pain has gotten unbearable so she decided on the replacement. She’s hoping this will not only allow her to keep up with Andrew, but also allow her to continue doing what she loves, which is nursing.
She’s been saying that she couldn’t lift her foot up towards her and it was feeling numb. She could move the toes, but not the foot. Today the doctor said she may have “foot drop”. I did some research and it could be from nerve damage from the surgery. I sure hope not! How dissappointing to have the knee replaced so you can become more mobile and get around without pain and then find out that you now have a new probelm to deal with! For a person who gives so much of herself, it’s just not fair. Tomorrow they will fit her with a brace to help keep the foot where it is supposed to be and she’ll start rehab. I sure hope this thing resolves!
A few words from Joe
Following is a post from my 9 year old son. He typed this all by himself. I didn’t know that he could type so well! :
Hi! I’m Joe. Andrew and I always have fun together and Justin and I have fun too. the best part about CDLS is donating money to them. Also every 2 years we have a confrence and it’s VERY fun. you get to meet new friends there and stay at a hotel. (There like the best hotels ever!) I love my family and donating to CdlS very much. To all friends (Including Dr’s and people who donate) GOOD LUCK!
G-tube Insanity
I’m going absolutely insane right now. Andrew goes through phases when he pulls his g-tube out ALOT. I mean like 10-15 times a day! Everything I’ve tried to deter him is futile. He is older and wiser and can just about beat anything I can come up with. He’s too big for onesies, and it’s so hot I hate to put them on him. The only thing that works sometimes is overalls. I actually put the overalls on first and the shirt over top. It doesn’t look very comfortable, but it’s the only thing he hasn’t beaten consistently. But I only have so many pairs of overalls, which means I’m washing a lot! And pulling my hair out!
G-tube tossed aside.
Andrew has done this before, but this time is a little different. He’s not just pulling the tube out and throwing it. He’s actually chewing on it and destroying the balloon! He’s gone through 3 g-tubes in less than 2 weeks! I’m waiting for the insurance company to cut us off! And I won’t even get into the mess! Several sets of clothes a day. Not sure I can afford to keep this kid.
If anyone has any ideas I would love to hear them. I am going to check out a website for clothing that is supposedly made for this type of thing. I hope they’re not too expensive but I think I’ve exhausted all of my own remedies.
Not Sweating the “Small” Stuff
As I was shopping today for an external disc drive for my laptop because mine doesn’t work anymore because Andrew pushed my laptop off the table, I once again thought about all of the adjustments and changes we continue to make in our home to keep up with our little angel. This particular adjustment cost us about $120. I guess I got off easy though. At least the laptop still works.
Just to list a few:
- We replaced our glass kitchen table with a granite table for fear of breakage.
We open our windows from the top now so we don't lose him if a screen pops out.
- New door knobs with lock and key for the powder room and office. Of course they didn’t fit properly and my husband had to spend much more time than he anticipated to get them to work properly.
- Furniture is slanted at odd angles to block outlets.
- End tables are clear of anything and I’m not really sure why we have them at all.
- Pictures are screwed into the walls or walls are left bare.
- We paid an insane amount of money to have our TV mounted to the wall high enough so that he can’t reach it.
- We converted a wine cabinet into an entertainment cabinet because it was the only thing we could find that was tall enough so that he couldn’t climb it, and it had glass doors so we could still operate the DVD and cable box, etc.
He's actually stuck inside a kitchen drawer!!
- The chairs at our breakfast bar are bungied together so he can’t tip them over. They are heavy metal chairs and he’s already dented our refrigerator and taken chunks out of the cabinets when he dumps the chairs over.
- Outlets in his bedroom have been raised out of his reach (and mine unfortunately) so we can safely plug in his DVD player and other light up things that he likes to watch at night.
- We had to replace our ceiling fan in the family room with a ceiling fan that has a light fixture because he managed to break the only lamp we have in the house, twice. Of course the wiring wasn’t there so we had to hire an electrician.
- Our dog had to learn her own type of modified sign language because we can’t leave food or water on the floor for her. The poor thing has to drag her water bowl across the floor if she wants water and her food bowl if she is hungry.
Ripping up the old decking.
- And the latest thing, a new deck with composite flooring to try to eliminate the many, many splinters he gets all summer. What fun for Paul!
I could go on and on. It’s amazing how much time is spent trying to outsmart him and plan for his next move before he actually does it. I even use luggage straps to wrap around his dresser to keep him from being able to open the drawer and slam it shut at all hours of the night. It surprises me sometimes at how resourceful I can be. I didn’t know I had it in me.
Even with all of that, you can’t help but be completely in love with the little brat. ; ) I have to say, we’ve certainly learned alot about not sweating the small stuff. Sometimes the small stuff ends up costing you a few bucks, but it’s still small stuff in the grand scheme of things.
He’s happy, he’s fairly healthy, and we have, so far, had the resources to keep up with him. And he keeps my brain from getting too lazy! So I’m thankful for that!
Andrew 101
first trip to the beach
I’m new to this blog thing, so please bear with me while I find my way around. Andrew 101 is a great way for me to get started. So…Heeeeere’s Andrew!
At birth Andrew weighed only 4 pounds and 15 ounces.
It was a scary time but he was a trooper.
He has great eye contact easily gets people to fall in love with him.
He had a nissen fundoplication at the age of 2 1/2 months and a g-tube placed at the same time.
Andrew has been fed through the g-tube since 3 months of age.
He enjoys the tastes of certain foods, but has difficulty with the whole chewing, swallowing and breathing thing all at the same time.
The foods he loves to taste are chocolate chip cookies, oreos of course, and cheese puffs, as well as doritos and lime flavored nachos.
He’s now 6 years old, weighs about 30 pounds (and has for the last 2+ years) and is about 36 inches tall.
He attends an autistic support classroom in a school nearby.
He loves his keyboards (yes, he has more than one)
Andrew loves school and riding the bus to and from school
As most kids with cdls, Andrew has significant delays in speech. He likes to say “mom mom mom mom” and has started producing the “h” sound which is pretty exciting. We expect some speech some day. For now he uses pictures, over 30 words in adapted sign language and we are experimenting with augmentative devices.
Andrew has two older brothers. Justin is 19 and Joe is 8.
His favorite things are toys that light up and make music, anything that vibrates including his electric toothbrush, and mirrors (he’s his favorite playmate).
His favorite things to do: spinning, banging on EVERYTHING including tables, cabinet doors, windows (the louder the better), dumping our kitchen chairs, swinging on the swings, driving his little electric car in circles in the yard, running, oh…and harrassing our dog.
He’s recently become obsessed with zippers and will approach strangers to zip or unzip their coats. I’m in no hurry for him to figure out that most pants have zippers too! Yikes!!
He has an infectious laugh and at times appears to be laughing hysterically at absolutely nothing.
Loves foot rubs and can manipulate almost anyone into giving him one.
He just surprised Dad with the "three stooges" poke in the eyes.
Andrew has a great sense of humor and likes to tease.
One of his favorie games is what we like to call “Andrew says”. It’s kind of like “Simon says” only Andrew always gets to be the leader. If someone else tries to lead he quits the game.
While he can certainly push the limits and beyond, he is truly a joy and such a happy boy.
Because of Andrew we’ve joined a special club in the world of special needs. We’ve made so many new friends and have grown in so many ways. I know it sounds cliche, but what a blessing!!
