a meltdown. It happened this morning. After we had breakfast, I told Matthew we would go "bye-bye" for a bit. Nothing long, just an errand and home again. Had PLENTY of stares from folks and a couple actually asked me, "What's wrong with his arms?" LOL It's amazing how folks KNOW it's not right to stare, but yet, they do and then ask what's wrong. I just said he had surgery in his mouth and they don't want him putting fingers inside. End of story.
Anyway, Matthew had a major meltdown. I knew it was coming, just didn't know when. It happened today. As I was changing him and putting the medicine on the places "down below"/suture sites. He had had enough! That was it. I was kicked, pinched, you name it. He did it. Matthew was crying/screaming just about as much as Monday evening. But this was different. Different cry. More like, TEMPER TANTRUM time. I let him have it. Literally. If I had surgery, if I had pain like he did, I'd be unhappy and have a meltdown too. I put him on the floor gently and let him have at it. (He couldn't hurt himself. Diaper was on. No-no's were on.) After about 2 minutes, he was done. I asked him are you finished? Matthew said yes. I said good, now can we go "bye-bye"? He said yes and away we went. He's been excellent since then.
Right now, he had a milkshake (that melted by the time we got home) from Burger King and it was CHOCOLATE! He drank that and said he was tired so I put him in bed. He's sleeping. I tell ya, after the past couple of days, for him to have a 2 minute meltdown..........well, BIG DEAL! I asked him later was he hurting and he said no. It was pure temper.....pure I've had enough temper. He gave his hugs and we went to do our errand. Man......what a trooper!
You know? I never said anything until now, but while him and I were in the hospital on Monday night, I asked Matthew (when he wasn't hurting anymore) was it better to be at the hospital with Mommy or back in China. He looked at me and said w/Mommy. Then he put his arms up for a hug. I can't imagine my boy having surgery in China with NO ONE with him. Not one person. He would be there all alone. I know he did that twice, but NEVER again!!!! I promised him that. Daddy too.
So today is an ok day. Just the one meltdown. Who knows when he gets up. I don't tell him no or don't do that. Why? What for? He's had surgery and enough pain for a grown person to go crazy over! He's entitled. As long as he doesn't hurt himself, go right ahead. And when he's done? We'll go do something else. :o)
The mommy files
Important dates:
Thursday, September 13, 2007
Wednesday, September 12, 2007
Hungry!
Our little boy is hungry! Last night it was pathetic. Mom, Dad and Becca ate and Matthew drank. He started crying. I had to remind Matthew that it was only for a short period of time and that I would try and make him soft foods tomorrow (which is today). Soft scrambled eggs should be a hit with him. He's so hungry! A smoothie for dinner was ok, but he wanted FOOD! REAL FOOD!
This morning he wanted to go with his big sister to daycare, but he couldn't. He wasn't happy about that either. He was REALLY upset when it was time to "wash and medicate" the sutures "down below".........we have to do this every time we change his diaper! He cries. It hurts. We know this. But we MUST do it or infection will set in. We don't want that.
Right now Matthew is playing with legos and watching Lilo & Stitch. He likes both. He has his no-no's off for the moment. He KNOWS the rule! No touch mouth!!! He hasn't really touched it, or come close, but even when I just leave the room for a minute, I put the no-no's back on because we don't want to go through all of this again!!!
Charlie the doggie is watching over Matthew pretty intently too. I think Charlie knows Matthew is "sickly" for the moment. It's interesting to see.
The mommy files
This morning he wanted to go with his big sister to daycare, but he couldn't. He wasn't happy about that either. He was REALLY upset when it was time to "wash and medicate" the sutures "down below".........we have to do this every time we change his diaper! He cries. It hurts. We know this. But we MUST do it or infection will set in. We don't want that.
Right now Matthew is playing with legos and watching Lilo & Stitch. He likes both. He has his no-no's off for the moment. He KNOWS the rule! No touch mouth!!! He hasn't really touched it, or come close, but even when I just leave the room for a minute, I put the no-no's back on because we don't want to go through all of this again!!!
Charlie the doggie is watching over Matthew pretty intently too. I think Charlie knows Matthew is "sickly" for the moment. It's interesting to see.
The mommy files
Tuesday, September 11, 2007
Last 24 hours..............HOME!!!!!!!!!!!!
As of 9:30am this morning, Matthew was released from Children's National Medical Center. (Thank God) It took quite awhile to get to this point though.
Yesterday around 5:30pm:
Matthew was sleeping pretty much until about 5:30pm.....about 3 1/2 hours after surgery was completed. His "coddle of pain blockers" (for "down below") was starting to wear off and OH MY GOSH WERE WE AWARE OF IT! We were in a room in which they call a holding room. (1/2 way from operating table to regular room, sort of) Matthew woke up from a sleep just screaming for all he was worth! Apparently the block wore off, he wee weed and that's what started this. From 5:30pm to 11:30pm, different pain meds were tried.....fentanol (sp?), then Tylenol 3 w/codiene and finally morphine! Thank God for the morphine!!!! It kicked in and Matthew ended up falling asleep, as he was crying. All the walking, craddling, holding, hugging, riding in the radio flyer wagon in the world wasn't enough for our son's pain! God did we feel it, in many different and horrible ways! (Not like him mind you, but watching your child in pain and there isn't anything you can do about it is SOOOOOO VERY hard to watch! Especially as the nurses try to work on him because every bell, button, flashing light and knob on the IV thingie is going off!!! That and your child's heart rate fly from 95 to 185 at the drop of a hat and the IV thingie says in bright RED/yellow lights TACHY.) Blood oozing out of his nose and mouth because of being so upset as it is plus the palate doing this on top of it and your son panicking over that! OY!
TODAY:
Anyway, the nurses changed shifts and helped us so much! All the nurses helped us alot but the night nurses helped us greatly! It was just Matthew and mommy by then. Jackie and Rose helped us move to an isolation room for more privacy and to be closer to the nurses station. By midnight, Matthew was sleeping, semi tolerating the pain and going in and out of sleepyland. Mommy got some much needed sleep finally until more alarms went off when Matthew occluded his IV lines. After that, Rose was on board then and said for me to sleep and she will look after Matthew. It was hard to trust anyone with your child, but Rose was a mom too. A nurse and very forgiving and graceful with her child patients. (and parents) I said yes. 6am rolled around and Matthew was already up and "flirting" with Rose! Yep, my son was back! The nurses coming on at 6am were so funny towards Matthew. Said he was a little cutie! Yep, that's Matthew.
The breakfast of choice was apple juice and milk! For Matthew, this was a good feat for him! He drank both. Tried melted ice cream, but nope, didn't work. The doctor came in at about 9am and took out Matthew's "pack" inside his upper palate and it was sutured to his teeth to keep in place! Matthew did NOT like having that removed but he just kept saying OUWEE, OUWEE mommy. 4 clips and it was over! We could go home!!!
Surgery:
(His palate looks GREAT! NO HOLE! Matthew's palate has a VERY new and innovative graft inside it (grafting of a new plastic piece). Only a hand full of patients have this at CNMC! Matthew's fistula was definitely MORE INTENSIVE than anyone knew. His hole was a finger's worth from what you could see inside his mouth. BUT, once the surgeon got past that, he said it was HUGE and wide open! What China did? I have no clue, but I know what is there now!!!! He closed up the first layer of soft tissue, put the plastic in and then put another layer of skin. He said the body would absorb the plastic with no problem. This is why this part of the surgery took longer than expected.)
(The second part of the surgery took longer because Matthew's hernia was much more bigger than the urologist thought. She had to put it all back where it should be. More intensive then she thought as well. The rest of the urological issues went just fine.)
So, we are home, we are ok. Matthew is doing ok. He's on meds. Pain is there, but much better than before. Mom and Dad are ok. Becca is trying to be calm around Matthew. (easier said than done)
The mommy files
Yesterday around 5:30pm:
Matthew was sleeping pretty much until about 5:30pm.....about 3 1/2 hours after surgery was completed. His "coddle of pain blockers" (for "down below") was starting to wear off and OH MY GOSH WERE WE AWARE OF IT! We were in a room in which they call a holding room. (1/2 way from operating table to regular room, sort of) Matthew woke up from a sleep just screaming for all he was worth! Apparently the block wore off, he wee weed and that's what started this. From 5:30pm to 11:30pm, different pain meds were tried.....fentanol (sp?), then Tylenol 3 w/codiene and finally morphine! Thank God for the morphine!!!! It kicked in and Matthew ended up falling asleep, as he was crying. All the walking, craddling, holding, hugging, riding in the radio flyer wagon in the world wasn't enough for our son's pain! God did we feel it, in many different and horrible ways! (Not like him mind you, but watching your child in pain and there isn't anything you can do about it is SOOOOOO VERY hard to watch! Especially as the nurses try to work on him because every bell, button, flashing light and knob on the IV thingie is going off!!! That and your child's heart rate fly from 95 to 185 at the drop of a hat and the IV thingie says in bright RED/yellow lights TACHY.) Blood oozing out of his nose and mouth because of being so upset as it is plus the palate doing this on top of it and your son panicking over that! OY!
TODAY:
Anyway, the nurses changed shifts and helped us so much! All the nurses helped us alot but the night nurses helped us greatly! It was just Matthew and mommy by then. Jackie and Rose helped us move to an isolation room for more privacy and to be closer to the nurses station. By midnight, Matthew was sleeping, semi tolerating the pain and going in and out of sleepyland. Mommy got some much needed sleep finally until more alarms went off when Matthew occluded his IV lines. After that, Rose was on board then and said for me to sleep and she will look after Matthew. It was hard to trust anyone with your child, but Rose was a mom too. A nurse and very forgiving and graceful with her child patients. (and parents) I said yes. 6am rolled around and Matthew was already up and "flirting" with Rose! Yep, my son was back! The nurses coming on at 6am were so funny towards Matthew. Said he was a little cutie! Yep, that's Matthew.
The breakfast of choice was apple juice and milk! For Matthew, this was a good feat for him! He drank both. Tried melted ice cream, but nope, didn't work. The doctor came in at about 9am and took out Matthew's "pack" inside his upper palate and it was sutured to his teeth to keep in place! Matthew did NOT like having that removed but he just kept saying OUWEE, OUWEE mommy. 4 clips and it was over! We could go home!!!
Surgery:
(His palate looks GREAT! NO HOLE! Matthew's palate has a VERY new and innovative graft inside it (grafting of a new plastic piece). Only a hand full of patients have this at CNMC! Matthew's fistula was definitely MORE INTENSIVE than anyone knew. His hole was a finger's worth from what you could see inside his mouth. BUT, once the surgeon got past that, he said it was HUGE and wide open! What China did? I have no clue, but I know what is there now!!!! He closed up the first layer of soft tissue, put the plastic in and then put another layer of skin. He said the body would absorb the plastic with no problem. This is why this part of the surgery took longer than expected.)
(The second part of the surgery took longer because Matthew's hernia was much more bigger than the urologist thought. She had to put it all back where it should be. More intensive then she thought as well. The rest of the urological issues went just fine.)
So, we are home, we are ok. Matthew is doing ok. He's on meds. Pain is there, but much better than before. Mom and Dad are ok. Becca is trying to be calm around Matthew. (easier said than done)
The mommy files
Monday, September 10, 2007
An unhappy little boy......
That and a semi stressed mom is what I left at the hospital couple of hours ago. Matthew got through his procedures really well and was awake and semi alert when he got to the recovery room. However when the pain meds started to wear off he got more and more discomforted and fuzzy. It is a little hard for a almost three year old to comprehend that a few hours of pain makes for a lifetime of gain. One thing is for sure... It is very tough to watch your little son in pain and not being able to give him sufficient comfort to make it better for him. If everything is well with him in the morning he will be able to come home, if not he'll be admitted for at least one day.
Roy
Roy
Sunday, September 09, 2007
Surgery update as of SUNDAY NITE!
Here is the latest in what the surgical ward/recovery nurse has told us as of today. Monday, Matthew's surgery was moved up to 10am. We need to be at Children's Hospital by 8am. (Parked, signed in and waiting.) Things will get rolling as Roy and I sign him into the surgical ward. Matthew WILL be staying at least until Tuesday. (Best case scenario is that he goes home Tuesday. If one thing goes wrong, he will stay indefinitely until the doctors see fit to discharge him.) The main reason for him staying awhile is because his surgery will take a while to do. Appx. 4 hours. Going in at 10am and coming out at 2pm, being in recovery for up to 2 hours afterwards, Matthew may not feel like drinking anything for dinner. If he cannot drink something, he will not go home..............but also, his hernia side of the surgery. He will have 2 incisions on his lower abdomen where they "pushed" all the intestines up where they should be. They do not want infection to set in.
Today was Matthew's day. ALL DAY.....he got his favorite breakfast, bacon and eggs w/hasbrowns, for lunch he wanted a hot dog and for dinner? PIZZA! He wolfed it down too!!! The blender is cleaned up, ready to go, momma has so many fruits lined up in the refrigerator for Matthew's smoothie's, it's quite interesting to see. Ice cream is freezing......oooo, forgot to turn on the ice maker. Will do that as soon as I'm done. Other than that? NO MORE FOOD or DRINK for Matthew until after the surgery! Roy and I will take turns going to eat breakfast at Children's tomorrow. (being a diabetic, uh, YEAH, like I have a choice?) All the kids in the surgical ward have to fast for surgery so there is NO FOOD and NO DRINKS allowed in that area.
Daddy's doing fine. Becca? Oh my gosh was she in rare form today! (Knew she was going to her Aunt Kimmy's house.) Matthew? He's fine. He says he's going to see Dr. Murthy tomorrow. He truly likes him ALOT! I'm glad.....Mommy? Well, I'm trying to keep myself together. Putting Matthew to sleep will be the hard part. That's like the "real" part to me. Maybe it has alot to do with my parents dying, whatever, who knows. I'll be fine. I just keep telling myself to GET OVER IT already. It usually works.
Anyway, I've told some, now I tell all, CALL OUR CELL PHONES and leave messages on the voicemails! We will get back with you when we make it to the cafeteria! If we need to get messages out to folks, we have our avenues! YOU WILL KNOW! Just hang tight.
Thank you for praying for our son. Please keep up the good fight for him. Prayers are always welcome for him and for us!!!
I think that's all for now.
Today was Matthew's day. ALL DAY.....he got his favorite breakfast, bacon and eggs w/hasbrowns, for lunch he wanted a hot dog and for dinner? PIZZA! He wolfed it down too!!! The blender is cleaned up, ready to go, momma has so many fruits lined up in the refrigerator for Matthew's smoothie's, it's quite interesting to see. Ice cream is freezing......oooo, forgot to turn on the ice maker. Will do that as soon as I'm done. Other than that? NO MORE FOOD or DRINK for Matthew until after the surgery! Roy and I will take turns going to eat breakfast at Children's tomorrow. (being a diabetic, uh, YEAH, like I have a choice?) All the kids in the surgical ward have to fast for surgery so there is NO FOOD and NO DRINKS allowed in that area.
Daddy's doing fine. Becca? Oh my gosh was she in rare form today! (Knew she was going to her Aunt Kimmy's house.) Matthew? He's fine. He says he's going to see Dr. Murthy tomorrow. He truly likes him ALOT! I'm glad.....Mommy? Well, I'm trying to keep myself together. Putting Matthew to sleep will be the hard part. That's like the "real" part to me. Maybe it has alot to do with my parents dying, whatever, who knows. I'll be fine. I just keep telling myself to GET OVER IT already. It usually works.
Anyway, I've told some, now I tell all, CALL OUR CELL PHONES and leave messages on the voicemails! We will get back with you when we make it to the cafeteria! If we need to get messages out to folks, we have our avenues! YOU WILL KNOW! Just hang tight.
Thank you for praying for our son. Please keep up the good fight for him. Prayers are always welcome for him and for us!!!
I think that's all for now.
Friday, September 07, 2007
Everything looks like a GO!
Paperwork, paperwork, paperwork! LOL, thank goodness Matthew doesn't have to do all this paperwork. And there is surely going to be more on Monday, I'm sure.
Matthew went yesterday to the pediatrician for last minute pre-op stuff and was given the OKIE DOKIE sign to go. I've spoken with Children's Hospital and we had to fax one thing to them but other than that, it looks like a go on their half too. So now we wait for our Surgical Ward Nurse to call us with details about Matthew's 24 hours leading up to the surgery.
Gosh, so many things run through a parents mind. I tell ya. Racing, like Indy or NASCAR wouldn't be able to keep up with my brain at the moment. I'm just waiting to get home to start doing things there. (Taking away sippy cups, do Matthew's bedroom/tidy up, pack for Matthew, myself and Rebecca, getting my recipes in order for Matthew, etc.)
Becca is going to my sister's house Sunday night and she will take care of her for Monday and possibly beyond that if need be. (hopefully not though) We will try our darndest to keep everyone up-to-date on Matthew on Monday. NO CELL PHONES are allowed in the surgical ward where we will be. LEAVE A VOICEMAIL on my cellphone! (Yes, we have new ones that let you do that.) I will get back to you, or Roy will. If we start calling some folks, that means something has happened (not a good thing) and will be asking for MAJOR prayers! I hope this doesn't happen, but it would be nice to get ahold of our closest family/friends (if need be).
Charlie goes to the vet on Saturday. Poor thing. POOR THING? HA! Yeah right! Guess who had the runs (outside mind you) this morning because he got into our BRAND NEW LOAF OF WHEAT BREAD?!?!?! Yep, Charlie! At least he has good taste! But good grief!
TMI (too much information), I know. He is a member of the family now! So you get to hear about HIS antics too!
Ok, a little humor amongst some seriousness. That's a good thing.
Until you hear from us again..........don't know if it will be this weekend or on Monday.........stay tuned. AND, keep praying for our son, please! Thank you for your outpouring/tenderhearted prayers for him. He's come a long way! Thank you.
The Mommy files
Matthew went yesterday to the pediatrician for last minute pre-op stuff and was given the OKIE DOKIE sign to go. I've spoken with Children's Hospital and we had to fax one thing to them but other than that, it looks like a go on their half too. So now we wait for our Surgical Ward Nurse to call us with details about Matthew's 24 hours leading up to the surgery.
Gosh, so many things run through a parents mind. I tell ya. Racing, like Indy or NASCAR wouldn't be able to keep up with my brain at the moment. I'm just waiting to get home to start doing things there. (Taking away sippy cups, do Matthew's bedroom/tidy up, pack for Matthew, myself and Rebecca, getting my recipes in order for Matthew, etc.)
Becca is going to my sister's house Sunday night and she will take care of her for Monday and possibly beyond that if need be. (hopefully not though) We will try our darndest to keep everyone up-to-date on Matthew on Monday. NO CELL PHONES are allowed in the surgical ward where we will be. LEAVE A VOICEMAIL on my cellphone! (Yes, we have new ones that let you do that.) I will get back to you, or Roy will. If we start calling some folks, that means something has happened (not a good thing) and will be asking for MAJOR prayers! I hope this doesn't happen, but it would be nice to get ahold of our closest family/friends (if need be).
Charlie goes to the vet on Saturday. Poor thing. POOR THING? HA! Yeah right! Guess who had the runs (outside mind you) this morning because he got into our BRAND NEW LOAF OF WHEAT BREAD?!?!?! Yep, Charlie! At least he has good taste! But good grief!
TMI (too much information), I know. He is a member of the family now! So you get to hear about HIS antics too!
Ok, a little humor amongst some seriousness. That's a good thing.
Until you hear from us again..........don't know if it will be this weekend or on Monday.........stay tuned. AND, keep praying for our son, please! Thank you for your outpouring/tenderhearted prayers for him. He's come a long way! Thank you.
The Mommy files
Tuesday, September 04, 2007
Pre-op Surgical Tour at Children's Hospital
Sunday afternoon, the whole family went to Children's Hospital (CNMC) in Wash., DC. It would have been really nice had we known that the shuttle from the Brookland-CU Metro stop wasn't running on weekends. *ugh*
Anyway, we ended up taking the metro bus to Children's and lots of folks (even a homeless man) helped us. Thank you Lord! It was Matthew, Rebecca and a little girl named Marlo who were on the tour. (2 families) It was really nice to walk through every inch of what will happen on Monday. The nurses in the recovery unit were so helpful and answered so many questions. We went from the atrium to the beds where Matthew may be staying if he stays the night.
The kids put on masks, gowns, hats, shoe covers, etc. Doctors came by. Doctor Bear was around...........Matthew loves doctor bear! The kids were "dressing up" and looking over everything and able to touch machines and so forth. It was really neat for them to do that.
After the tour, the lady leading the tour had teddybear cookies and punch for the kids and each child was given a little present. I tell ya, everyone was up and happy and at ease about both surgeries. If you think about Marlo on Friday, please pray for her in and out surgery. (herniated kidney) She will be operated on and then released providing everything goes well. Her parents are really cool!
Matthew will go for pre-op lab work Thursday and there are loads of paperwork for our pediatrician to fill out and then, providing no fever and no signs of sickness, Monday morning, we'll go to Children's. Oh, the surgical nurse will call us either Saturday or Sunday night. NO FOOD for Matthew after midnight Sunday night. NO DRINKS except water up to about 4am? Something like that. I'm sure he will be asleep for most of the way to the hospital.
Daddy and Mommy are looking forward to the surgery because his palate will be fixed, and no more food will come out, but at the same time, I don't want him to feel pain. Or be uncomfortable. That will hurt us more so than him. I know once we get into the "sleepy room" (induction room) for Matthew to fall asleep, that will be hard. What parent wants to see their kids be put to sleep?! *sigh*
We'll be ok. Just please pray for our son! Pray everything goes according to plan and that there are no surprises or anesthesia problems. We thank you in advance.
Matt & Becca's mommy
Anyway, we ended up taking the metro bus to Children's and lots of folks (even a homeless man) helped us. Thank you Lord! It was Matthew, Rebecca and a little girl named Marlo who were on the tour. (2 families) It was really nice to walk through every inch of what will happen on Monday. The nurses in the recovery unit were so helpful and answered so many questions. We went from the atrium to the beds where Matthew may be staying if he stays the night.
The kids put on masks, gowns, hats, shoe covers, etc. Doctors came by. Doctor Bear was around...........Matthew loves doctor bear! The kids were "dressing up" and looking over everything and able to touch machines and so forth. It was really neat for them to do that.
After the tour, the lady leading the tour had teddybear cookies and punch for the kids and each child was given a little present. I tell ya, everyone was up and happy and at ease about both surgeries. If you think about Marlo on Friday, please pray for her in and out surgery. (herniated kidney) She will be operated on and then released providing everything goes well. Her parents are really cool!
Matthew will go for pre-op lab work Thursday and there are loads of paperwork for our pediatrician to fill out and then, providing no fever and no signs of sickness, Monday morning, we'll go to Children's. Oh, the surgical nurse will call us either Saturday or Sunday night. NO FOOD for Matthew after midnight Sunday night. NO DRINKS except water up to about 4am? Something like that. I'm sure he will be asleep for most of the way to the hospital.
Daddy and Mommy are looking forward to the surgery because his palate will be fixed, and no more food will come out, but at the same time, I don't want him to feel pain. Or be uncomfortable. That will hurt us more so than him. I know once we get into the "sleepy room" (induction room) for Matthew to fall asleep, that will be hard. What parent wants to see their kids be put to sleep?! *sigh*
We'll be ok. Just please pray for our son! Pray everything goes according to plan and that there are no surprises or anesthesia problems. We thank you in advance.
Matt & Becca's mommy
Subscribe to:
Posts (Atom)
