Stressful morning today. We had to get the boys up and out of here by 8:15. We made it out more like 8:30 but that was okay because my ETD goal had wiggle room. Nancy H was here for Collie and Julie for Casey so we all did our thing to make this happen.
Of course, we get to Fletcher Allen and up to the Children's Hospital and we wait. Actually, Colin, Nancy and I didn't wait too long before we had to go in for the blood pressure check, med check, etc. But the medical assistant was going to find someone to do Casey at the same time and apparently that didn't happen because when I went looking for them they were still in the waiting area, sigh.
Then, when we were all together again in our room (thankfully they give us the procedure room since it's bigger than an exam room). we had to wait a bit before we had anyone come in. We saw Paul (PT) and he's going to get on Jack about Casey's order for his chair which includes a new headrest, air cushion and elevating leg rests. It's been weeks and Jack told me the other day he was still getting quotes for the head rest pieces, sigh again.
Dr. Benjamin (physiatrist-rehab doc) came in and was energetic like normal. He's a funny, crazy guy and talks about drumming a lot and speaks quickly. We like him, it's just kind of hard to keep up with him, ha ha. Talked about Colin's hands and how they are turning a bit and how they are puffy. Not much to do but massage hands and try to prop them up when we can. Talked about stander, etc. No changes for him. He had us put Casey's foot plate out a bit and put a pillow behind his knees to do a little stretching, which is good. It will also help prepare Casey for when he gets to use his leg rests (if we get insurance approval) independently through his chair electronics with his switch. Will be trying to do more belly time with him to work on his legs and hips.
Saw Dr. Bingham (neuro) and caught him up. I gave him some info on the happenings in SMA research at Nationwide Children's hospital. Pretty exciting stuff which will require a separate blog entry one of these days.
At this point Casey was being totally loud and vocalizing and would not stop. It was awful. He wouldn't use his DynaVox to tell us what was up, he wouldn't blink yes or no. He could not be distracted. NOTHING would stop him. I was pretty much losing my mind. I couldn't think and couldn't speak with the doctors effectively. It was so frustrating. Julie didn't want to bring him out because that's what she thought he wanted and just wouldn't tell us. Another sigh.
Dr. Cowan (pulmonologist) came in. We tried to ignore Casey's yelling but it was hard. We spoke of Colin's respiratory status (as we have done for a couple of years now--well, Dr. Cowan hasn't been here very long but we've discussed it with Dr. Lahiri as well), and how a trach is probably a good idea for Colin in the near future. He's doing well, but he does do oxygen "dips" when he's off bipap and hasn't spent more than a couple minutes off of bipap for a long time. We always talk about how if he does need to be intubated it would be next to impossible to do this without trauma to him. If he needs intubating it should be in a controlled situation using fibre optics and not the emergency way which COULD happen. Colin hasn't had a crash in a long time but who is to say that he won't in the future. And, so far, he responds to coughs well, and Gene has blown in his mouth a couple of times in the past (nothing recent) and that has cleared him out. Anyway, he's also going to need spinal fusion in the near future (before his curve gets bigger and compromises his lungs). The docs aren't too optimistic about him going back to bipap successfully after a big surgery. I'm on the fence about that but again, that's another blog.
Dr. Cowan and I talked about me noticing that towards morning Casey's heartrate has been going up although he's still sound asleep. I'm going to have the nurse monitor and log his heartrate and time and see if we see a pattern. We also talked about having both boys go to the newly formed Trach/Vent clinic. It would be with the pulmonary doc and Janet Deslaurier who is the head Respiratory Therapist at Fletcher Allen. She will go over settings and equipment and that kind of stuff so we'll probably do that in the next month or so.
Dr. Cowan is going to submit to Apria for the items we didn't get with the T-70 cough assist when we got Casey's recently. Long story. But we only got it with the bag and machine. No battery, no accessory cord to use in a vehicle and no rolling stand. We'll see. We got those things (minus the rolling stand--but we hadn't asked for one--)when we got the machine a while ago for Colin.
She'll also take on trying to get NanoVM vitamins/minerals covered by insurance for us. Some families pay out of pocket and some get it covered so we'll see about that, too. She said she'd have GI write a strong letter if it doesn't get pre-authorized at the first shot.
Dr. Cowan is great. She trained with Dr. Schroth in Madison, Wisconsin. Dr. Schroth is an SMA guru doc that many, many families go to and will travel many miles to have appointments with. So, Dr. Cowan knows the SMA protocols and will help us with our nutrition and pulmonary concerns if we do go ahead with surgery for Colin. And, of course, she would be there if we have ANY admission for either boy, so that gives us some relief from some worries, anyway.
Casey was still vocalizing, "yelling", whatever you want to call it. What the heck? If you've never met Casey, you probably have no idea of how loud he can actually be. Many kids with SMA and trachs are not able to be this loud (or maybe they are just more polite than my kid, ha ha).
Casey really had me over the edge and I didn't ask some of my questions so I was quite pleased when Dr. Cowan called me at home later on to follow up. Yay!
We went straight home because Nancy H was only scheduled for noon. I think she made it out of here a little before 1 PM. Again, we are very lucky we live so close to our hospital.
We got the boys settled into the living room. It started to rain just as we were going inside.
Julie ended up playing some wii with the boys. I took a little snooze after I spoke with Dr. Cowan and after I chatted with Casey's school case manager. Still trying to find transportation for Casey's summer school if things don't work out with SSTA.
Aunt Chris was here for a while. Gene didn't go anywhere today. Very unusual for him. I did some stuff in the wish room and watched Orange is the New Black on Netflix. It's odd for me to get addicted to a show like that. Especially with the theme of the show and how graphic it is (mature audiences, for sure!)--not like me, but I had read the book so I wanted to check it out. I've just started season 2.
Got the boys into bed a little earlier tonight but they were still up when Deb came at 10:00. We had thought that Casey would drop off to sleep early after expending so much energy, but no go.
Showing posts with label Fletcher Allen Health Care. Show all posts
Showing posts with label Fletcher Allen Health Care. Show all posts
Tuesday, June 24, 2014
Friday, April 11, 2014
GI appointments for the boys
Funny thing. The boys haven't seen GI in years. We were overdue so finally decided just to make the darn appointments and go. Plus the boys had been having some on and off constipation/loose stools but of course when the appointment came, the boys had been fine for a while.
And, the funnier thing is that both boys came out of the visit with prescriptions!!! Casey had yeast around his g-tube. I had been cutting back on his new probiotic, Dr. Mercola Complete, thinking it might be making his stools loose. Well, it didn't clear up the problem, plus he grew some yeast since I had cut back on his probiotics. So, he's back on a whole capsule instead of the half. He got a script for nystatin cream--2 weeks of applying a couple of times a day.
Colin had the tiniest bit of granulation tissue growing on the inside of his g-tube, near the edge. So he got a script for Kenalog 0.1% ointment. Also for two weeks.
Other than that, we just caught Dr. Damico up on how we've been doing the last several years. It's been so long that we've seen him that there is no electronic record of them seeing him (can't remember how long Fletcher Allen has had electronic records, but it's been years).
And, the funnier thing is that both boys came out of the visit with prescriptions!!! Casey had yeast around his g-tube. I had been cutting back on his new probiotic, Dr. Mercola Complete, thinking it might be making his stools loose. Well, it didn't clear up the problem, plus he grew some yeast since I had cut back on his probiotics. So, he's back on a whole capsule instead of the half. He got a script for nystatin cream--2 weeks of applying a couple of times a day.
Colin had the tiniest bit of granulation tissue growing on the inside of his g-tube, near the edge. So he got a script for Kenalog 0.1% ointment. Also for two weeks.
Other than that, we just caught Dr. Damico up on how we've been doing the last several years. It's been so long that we've seen him that there is no electronic record of them seeing him (can't remember how long Fletcher Allen has had electronic records, but it's been years).
Monday, March 3, 2014
Ears
We made it out of the house on time today--8:15 or so. Gene had warmed up the van and got us a little gas so that was a good thing. It was 0 degrees!
Ran into Debbie from school in the lobby of Fletcher Allen. I guess she works as a customer service rep as well as at school. She tried to get Casey to chat with him but he wasn't having any of it.
Got in to see Dr. Hubbell pretty quickly. I noticed that the person checking in after us had an appointment with him 5 minutes after us. He must rake in the bucks seeing patients for only 5 minutes! And, he literally did see us only for 5 minutes. But I guess it was okay. He tried to look in Casey's left ear and couldn't see a thing because of all the debris in there. So he got a good sucking out. We teased him because we said we wished the suction hose was clear so we could see the junk coming out. Nurse Julie and I love that kind of stuff--as long as it's coming from Casey, anyway. He suggested we now do Ciprodex drops for 7-10 days and then come back in 3 months. I had asked about new tubes but he said let's wait and see.
Got a coffee from the kiosk and headed up to see Mrs. Marshall, Julie's mom. She was in for a 'tune-up'. She is getting some IV antibiotics and respiratory treatments (no, she does not have a flu or anything catching). So, we made her day :) She was happy to see Julie, and then I came in and then she was over the moon to see Casey. He was perfect! No loud vocalizing. He was nice and quiet and listened and said a few things on his DynaVox.
Hit the gift store and Casey wanted to get Grandma (well, we call her that) a book. We know she likes puzzle books so we picked her out one and some Jolly Ranchers. Julie ran them upstairs to her while Casey and I got him on wifi.
We were fading, at this point, so we headed home to get some food.
Colin was good for Gene. He wanted to doze and listen to the radio so Gene just worked from the wish room and Colin hung out in bed.
I got Colin washed up and dressed and everyone settled into the living room.
Had a little lunch.
Took advantage of Julie being here and Gene so I went up for a nap. Julie and the boys played some wii.
I made some Rice Krispies treats. Played some more wii. Talked to Chris, Mom and Dad. And that's where we are now.
Oh, earlier, Gene said, "Where's Jaxon?" Usually Jaxon is in the living room or up our butts following us around. I went and looked for him and found him, Moxie and Nugget staring at a dead vole in the yellow room!! GROSS!!! I guess the voles taste really bad so they don't eat them, but they were still interested in watching the dead thing. I think it was Nugget that got it. I had seen him sitting by the back room not long before--that's usually a sure sign that there's a creature. Thank goodness Gene was home to get rid of it!
Ran into Debbie from school in the lobby of Fletcher Allen. I guess she works as a customer service rep as well as at school. She tried to get Casey to chat with him but he wasn't having any of it.
Got in to see Dr. Hubbell pretty quickly. I noticed that the person checking in after us had an appointment with him 5 minutes after us. He must rake in the bucks seeing patients for only 5 minutes! And, he literally did see us only for 5 minutes. But I guess it was okay. He tried to look in Casey's left ear and couldn't see a thing because of all the debris in there. So he got a good sucking out. We teased him because we said we wished the suction hose was clear so we could see the junk coming out. Nurse Julie and I love that kind of stuff--as long as it's coming from Casey, anyway. He suggested we now do Ciprodex drops for 7-10 days and then come back in 3 months. I had asked about new tubes but he said let's wait and see.
Got a coffee from the kiosk and headed up to see Mrs. Marshall, Julie's mom. She was in for a 'tune-up'. She is getting some IV antibiotics and respiratory treatments (no, she does not have a flu or anything catching). So, we made her day :) She was happy to see Julie, and then I came in and then she was over the moon to see Casey. He was perfect! No loud vocalizing. He was nice and quiet and listened and said a few things on his DynaVox.
Hit the gift store and Casey wanted to get Grandma (well, we call her that) a book. We know she likes puzzle books so we picked her out one and some Jolly Ranchers. Julie ran them upstairs to her while Casey and I got him on wifi.
We were fading, at this point, so we headed home to get some food.
Colin was good for Gene. He wanted to doze and listen to the radio so Gene just worked from the wish room and Colin hung out in bed.
I got Colin washed up and dressed and everyone settled into the living room.
Had a little lunch.
Took advantage of Julie being here and Gene so I went up for a nap. Julie and the boys played some wii.
I made some Rice Krispies treats. Played some more wii. Talked to Chris, Mom and Dad. And that's where we are now.
Oh, earlier, Gene said, "Where's Jaxon?" Usually Jaxon is in the living room or up our butts following us around. I went and looked for him and found him, Moxie and Nugget staring at a dead vole in the yellow room!! GROSS!!! I guess the voles taste really bad so they don't eat them, but they were still interested in watching the dead thing. I think it was Nugget that got it. I had seen him sitting by the back room not long before--that's usually a sure sign that there's a creature. Thank goodness Gene was home to get rid of it!
Monday, January 20, 2014
Bronch and upsized trach for Casey
I'm going to cheat a little here and use my Facebook posts to get this entry going and then I'll fill it out a bit :)
5 AM Going to get Casey up in a minute. We have to leave at 6 AM for his bronchoscopy. I'll update when I can.
7:35 AM They just took Casey back. Got IV in on first try. Casey is nervous but stoic.
8:15 ish He's done! Dr. Lahiri said It all looked great. No infection or plugs or granulation. Oh, he just wheeled by eyes open.
9 AM Settled in PACU. Started food. Watching the History channel. Dr Lahiri will be back soon to upsize trach. Have to stay at least one hour.
11 AM Larger trach placed. He says it feels weird but he sounds good. Julie started doing the change but couldn't get it passed the stoma so Dr Lahiri took over and got it in. Now, out with the IV and we're out of here. Heard the roads were bad so we'll take it slow.
Noon We're home. Van did great in the snow and Julie was a good driver Casey thinks he's big stuff because he has a "big throat" now, or a grown up throat, ha ha. Thanks for all the positive thoughts/prayers/mojo sent our way today.
1 PM I'm off to a nap. (didn't sleep well--too anxious about not getting up in time!). Julie has both boys in the wish room and they're all snuggled in. Casey is a little out of sorts but I think he's just tired and doesn't want to share Julie. Julie is going to wii with them. Gene is on a work call and is back up.
All in all, it was a successful day. It's always nerve wracking to go to the hospital for ANYthing but to have a procedure done that you haven't done before is really nerve wracking. AND, I hate any time that one of my kids has to have anesthesia. Today they used Versed and Propofol, which Casey has had before. It's not considered to be a heavy anesthesia--kind of middlish one. They kind of explained it to me that way. Speaking of, Julie took a picture of me and the Resident Anesthesiologist.
Dr. Lahiri is so laid back and I'm very thankful for him. I had told him about my concerns as to placing the new trach while he was under anesthesia. The anesthesia docs didn't get it but when I talked with Dr. Lahiri he was on my side and understood. Julie and I are the ones who understands his facial expressions and know how he likes to be positioned and that kind of stuff. Turns out I'll bet they were glad they didn't do it because as soon as the bronch was done they were wanting me and Julie with him because they had no clue about the Trilogy vent. I had thought that one of the RTs that knows the Trilogy was supposed to be there but something must have come up because I never saw her.
It was so funny to see Casey wheeled by the room where we had been waiting. He was all wide eyed and wondering what the heck was going on. They got Julie and I down into the recovery room pretty quickly. We had some very kind nurses in there. They pretty much let us do whatever we needed and tried hard to help us out with anything we needed. I think they were a little surprised as to how efficient we were with everything and didn't need much from them. They kept wanting to use their suction or their syringes, whatever, but we always had what we needed. (does that make sense??)
Gene and Colin did fine at home. He did his water, meds, neb, cough and got him dressed.
Julie was going to play wii in the wish room so they could be out there together and Casey could rest, but we think we'd have had to re-sync the wii u so I grabbed the seriously old Play Station that Lauren gave us and they played that. Everyone was happy.
Julie also squeezed in a call to DynaVox. FINALLY got it figured out for Casey to be able to send words to the Internet. She got Ian, and he has always been the best tech. They had to take off the keyboard Casey used to use to send info and he set it up a different way, but it works! Now that keyboard won't be there all the time taking up space when he's using the Internet. It will pop up for him when he hits the 'Enter Text Here' box. Anyway, I hope this works. Casey was very happy to be Google mapping again. He wanted the name of the town that the Rug Rats lived in. They were playing an old Rug Rats game so that was what was on his mind. Gene Googled it and came up with some town in California that really exists so he was happy.
Comcast guy came. Turns out it was a guy who had been here before and was awesome! He fixed us right up and we chatted about some things they have going on in Beta and some upcoming technologies. He also told me that I can get a really long HDMI cable so I will be able to sit on the couch and play computer games with the boys from my laptop and project on the TV. Before I was having to sit on a stadium chair that hurt my back and butt and be tethered with a 3 foot cable. And,that was an RGB cable but this laptop has HDMI so I'll probably get one of those.
What else....Oh, I had just been thinking that we hadn't had a major formula malfunction in a while and...from my post on Facebook...
I love how Casey uses his DynaVox to truly communicate something--not just his GoogleMaps or normal conversations that we have often (Like, Football, ipad, mom, please). This time he said, "Back cold." I had just given the boys their 'hot packs' (rice socks in the microwave). He said "Back Cold". Normally he doesn't like anything warm on his back or to have it rubbed or anything. I thought maybe he was feeling off from his procedure today. So I went to move his hot pack from his feet to his back and, voila, his med port on his g-tube extension had popped and formula was running down his back!!! I'm surprised he didn't say "Back Wet" but it still got his point across!
Got the boys into bed early. Colin slept in late so I wasn't sure if he'd go for it but it sounds quiet out there now. I can't believe there is school tomorrow. We're supposed to get the frigid cold weather back. It's down to 4 degrees already. Poo.
5 AM Going to get Casey up in a minute. We have to leave at 6 AM for his bronchoscopy. I'll update when I can.
 |
| Here's nurse Julie Marshall and Casey rockin' pre-surg |
7:35 AM They just took Casey back. Got IV in on first try. Casey is nervous but stoic.
 |
| there he goes! |
8:15 ish He's done! Dr. Lahiri said It all looked great. No infection or plugs or granulation. Oh, he just wheeled by eyes open.
9 AM Settled in PACU. Started food. Watching the History channel. Dr Lahiri will be back soon to upsize trach. Have to stay at least one hour.
 |
| still a little groggy |
11 AM Larger trach placed. He says it feels weird but he sounds good. Julie started doing the change but couldn't get it passed the stoma so Dr Lahiri took over and got it in. Now, out with the IV and we're out of here. Heard the roads were bad so we'll take it slow.
 |
| chatting in recovery |
Noon We're home. Van did great in the snow and Julie was a good driver Casey thinks he's big stuff because he has a "big throat" now, or a grown up throat, ha ha. Thanks for all the positive thoughts/prayers/mojo sent our way today.
1 PM I'm off to a nap. (didn't sleep well--too anxious about not getting up in time!). Julie has both boys in the wish room and they're all snuggled in. Casey is a little out of sorts but I think he's just tired and doesn't want to share Julie. Julie is going to wii with them. Gene is on a work call and is back up.
All in all, it was a successful day. It's always nerve wracking to go to the hospital for ANYthing but to have a procedure done that you haven't done before is really nerve wracking. AND, I hate any time that one of my kids has to have anesthesia. Today they used Versed and Propofol, which Casey has had before. It's not considered to be a heavy anesthesia--kind of middlish one. They kind of explained it to me that way. Speaking of, Julie took a picture of me and the Resident Anesthesiologist.
 |
| chatting about sedation |
Dr. Lahiri is so laid back and I'm very thankful for him. I had told him about my concerns as to placing the new trach while he was under anesthesia. The anesthesia docs didn't get it but when I talked with Dr. Lahiri he was on my side and understood. Julie and I are the ones who understands his facial expressions and know how he likes to be positioned and that kind of stuff. Turns out I'll bet they were glad they didn't do it because as soon as the bronch was done they were wanting me and Julie with him because they had no clue about the Trilogy vent. I had thought that one of the RTs that knows the Trilogy was supposed to be there but something must have come up because I never saw her.
It was so funny to see Casey wheeled by the room where we had been waiting. He was all wide eyed and wondering what the heck was going on. They got Julie and I down into the recovery room pretty quickly. We had some very kind nurses in there. They pretty much let us do whatever we needed and tried hard to help us out with anything we needed. I think they were a little surprised as to how efficient we were with everything and didn't need much from them. They kept wanting to use their suction or their syringes, whatever, but we always had what we needed. (does that make sense??)
Gene and Colin did fine at home. He did his water, meds, neb, cough and got him dressed.
Julie was going to play wii in the wish room so they could be out there together and Casey could rest, but we think we'd have had to re-sync the wii u so I grabbed the seriously old Play Station that Lauren gave us and they played that. Everyone was happy.
Julie also squeezed in a call to DynaVox. FINALLY got it figured out for Casey to be able to send words to the Internet. She got Ian, and he has always been the best tech. They had to take off the keyboard Casey used to use to send info and he set it up a different way, but it works! Now that keyboard won't be there all the time taking up space when he's using the Internet. It will pop up for him when he hits the 'Enter Text Here' box. Anyway, I hope this works. Casey was very happy to be Google mapping again. He wanted the name of the town that the Rug Rats lived in. They were playing an old Rug Rats game so that was what was on his mind. Gene Googled it and came up with some town in California that really exists so he was happy.
Comcast guy came. Turns out it was a guy who had been here before and was awesome! He fixed us right up and we chatted about some things they have going on in Beta and some upcoming technologies. He also told me that I can get a really long HDMI cable so I will be able to sit on the couch and play computer games with the boys from my laptop and project on the TV. Before I was having to sit on a stadium chair that hurt my back and butt and be tethered with a 3 foot cable. And,that was an RGB cable but this laptop has HDMI so I'll probably get one of those.
What else....Oh, I had just been thinking that we hadn't had a major formula malfunction in a while and...from my post on Facebook...
I love how Casey uses his DynaVox to truly communicate something--not just his GoogleMaps or normal conversations that we have often (Like, Football, ipad, mom, please). This time he said, "Back cold." I had just given the boys their 'hot packs' (rice socks in the microwave). He said "Back Cold". Normally he doesn't like anything warm on his back or to have it rubbed or anything. I thought maybe he was feeling off from his procedure today. So I went to move his hot pack from his feet to his back and, voila, his med port on his g-tube extension had popped and formula was running down his back!!! I'm surprised he didn't say "Back Wet" but it still got his point across!
Got the boys into bed early. Colin slept in late so I wasn't sure if he'd go for it but it sounds quiet out there now. I can't believe there is school tomorrow. We're supposed to get the frigid cold weather back. It's down to 4 degrees already. Poo.
Thursday, January 16, 2014
Sigh, doctors
Most interesting thing about today was dealing with the darn old doctors and Casey's feeding schedule the night before his surgery. First, Gene talked with someone about some general questions and then he deferred to me. According to whoever this person was, the anesthesia doc, Dr. Lahiri and our pediatrician thought that Casey shouldn't have any formula after midnight which would mean 8 hours of fasting for him. That doesn't fly for me AND I had talked to Dr.Lahiri before and he was on my side saying that Casey was a low risk for aspiration, etc. A bunch of phone calls later, including our pediatrician, I kind of agreed that he'd get his formula until 12:30 and then at 4:00-5:30 I'd run Pedialyte. The Pedialyte will give him hydration, electrolytes and sugars but he'd be without his aminos/protein which SMA kids need to thrive. I know it's only one feeding but he's never gone so long without before. We'll see what happens next. I still may get a chance to talk with Dr. Lahiri again. We had talked about emptying his stomach if there was anything it in so I don't see why anesthesia is being so strict. The procedure should only be 10-15 minutes long. Oh, and they agreed that he had a nissen fundiplication but it was placed at 9 months of age so they wouldn't trust it. Sigh. I get the risk of aspiration but I think they are going overboard.
AND, then our pediatrician mentioned that they might do the trach change while he's in the procedure room. So they would take out his AIRWAY when he was under anesthesia??? I think NOT!! I plan on that being a group effort that includes Nurse Julie and myself.
That's the gist of it without many of the details...I can't wait for it to be over with!!!! Oh, and they did say that if all goes well he'd be able to get his feeds right after. Casey is the first case in the AM--at 7:30 so that's a good thing. Is it Monday afternoon yet??????????
Other interesting thing that happened today was that Mrs, Short (Casey's SLP and case manager) called and said she got Casey's note about wanting to stay in the Read, Read, Read class. They talked about it for a while and then she told him he could go to it today and we'd talk about it. She wanted to honor his feelings since he doesn't always get a lot of say in things. I'm fine with it. I was hoping he'd enjoy the creative writing, but there is next year so we'll keep it in mind.
Read some of Emma on my 'nap' time today. Still not loving it but am keeping an open mind and remembering that it was written by a woman, and written over a hundred years ago.
Casey had Randi today (art therapist). He had he going on about the Fresh Prince of Bel Air and she sang him the theme song (you can tell by this that she is young :) ) Then he wanted to come up with alternative names for himself. Odd, I know, but he likes getting people going and making them guess things.
AC came and hung out with Casey for awhile and then played some Lego with Colin. Of course, I had to help and I made some good progress, hee hee.
Watched Idol from yesterday. It was annoying because there must have been something wrong with the air waves because the show came out all jittery and kept stopping. Then Gene said, maybe it's On Demand. Bingo! But we had to watch the darn commercials.
Pre-registration called and we got that done. My poor cake and ice-cream got a little soggy. Why do people always call whenever I touch food?? Maybe I touch food a lot?????
AND, then our pediatrician mentioned that they might do the trach change while he's in the procedure room. So they would take out his AIRWAY when he was under anesthesia??? I think NOT!! I plan on that being a group effort that includes Nurse Julie and myself.
That's the gist of it without many of the details...I can't wait for it to be over with!!!! Oh, and they did say that if all goes well he'd be able to get his feeds right after. Casey is the first case in the AM--at 7:30 so that's a good thing. Is it Monday afternoon yet??????????
Other interesting thing that happened today was that Mrs, Short (Casey's SLP and case manager) called and said she got Casey's note about wanting to stay in the Read, Read, Read class. They talked about it for a while and then she told him he could go to it today and we'd talk about it. She wanted to honor his feelings since he doesn't always get a lot of say in things. I'm fine with it. I was hoping he'd enjoy the creative writing, but there is next year so we'll keep it in mind.
Read some of Emma on my 'nap' time today. Still not loving it but am keeping an open mind and remembering that it was written by a woman, and written over a hundred years ago.
Casey had Randi today (art therapist). He had he going on about the Fresh Prince of Bel Air and she sang him the theme song (you can tell by this that she is young :) ) Then he wanted to come up with alternative names for himself. Odd, I know, but he likes getting people going and making them guess things.
AC came and hung out with Casey for awhile and then played some Lego with Colin. Of course, I had to help and I made some good progress, hee hee.
Watched Idol from yesterday. It was annoying because there must have been something wrong with the air waves because the show came out all jittery and kept stopping. Then Gene said, maybe it's On Demand. Bingo! But we had to watch the darn commercials.
Pre-registration called and we got that done. My poor cake and ice-cream got a little soggy. Why do people always call whenever I touch food?? Maybe I touch food a lot?????
Tuesday, November 19, 2013
Only two more to go!
Spent another day at Fletcher Allen getting the boys infusions done to increase their bone density. Over a two-year period we have to go every three months and today was #6!! We go again in February and then again in May and we'll be done.
We thought Nurse Lauren was going to work today but she woke up with a cold. So it was just me and Nurse Julie. Of course my timing of everything was off but we made it out of here only about 5 or 10 minutes later than planned.
Hit registration, which took a while, and then we went to the Comfort Zone. They put us in a big room so we could be all together so that was good. Casey went first. After a lot of looking and warming up various parts, they tried his foot (where it was successful last time) but it was a no go. Then they got his left antecubital on the first try, whew! Casey kept everyone on their toes talking about his Google maps and songs and such. They got Colin on the first try in his left antecubital as well. Another whew! His poor little hands were dripping with sweat but he was congenial. The Comfort Zone nurses are used to working with kids so we had lots of joking around and some singing, oh my.
Headed up to the Children's Center. Some waiting. Check vitals. Head to the Bay. We waited to make sure their pre-infusion labs were good and then we got them out of their chairs and settled onto the beds.
Tylenol given. Saline bolus given. Get the word that labs were okay on both so the infusions run for 2 hours.
Casey had the Child Life Specialist, Jenny, to himself for a while and he loved it. They have developed a relationship over these visits and enjoy each other. She is a good sport. She takes Casey's orders for this or that movie and tries to figure out what he wants. "Man, movie, funny...Christmas." They finally figured out he wanted the Jim Carrey's version of How the Grinch Stole Christmas and they didn't have it anywhere in the hospital! They both got a chuckle out of that. And, it's not on Netflix, either because she went and got an ipad and tried.
Colin was pretty easy today. Some ows and one change of movie because he decided he didn't like it but other than that it was just routine.
Saw Dr. Zimacus, the endocrinologist. Talked about maybe jump starting Casey's puberty with testosterone injections. That's all I'll say here :)
Our only downfalls were: both Julie and I forgetting to give the boys their 1 o'clock feeds, and Julie forgetting to bring an extra Trilogy battery. Not bad for a long day at the hospital.
We actually had infusions done by 2:30 or so. Packed up, in chairs, with coats on by 2:40. Got the van by 2:50 and home by 3:20.
Again, I am soo thankful for our van, Nurse Julie and our hospital being so close and being so good to us.
Got home and started getting settled and Paul from Apria came with Colin's new heater. VERY long story short, Colin's heater crapped out on Thursday. Sent a script for new one to Apria on Friday. Apria came back saying they can't provide such a thing and to find a new DME. PFFFTTT! Luckily, we have two. What would we have done if we didn't have 2???? Colin could NOT have gone from Thursday to Tuesday with out a heated humidifier. Anyway, Apria couldn't figure out how to get one/bill one so they gave us one they had. I appreciate that but find it totally wacked out that they couldn't figure out the paperwork and how to bill for one. So many stupid changes going on.
While Paul and I were talking in the hallway, some drama was taking place in the living room. Gene was lifting Casey of out his chair thinking that everything was unhooked. Nope. Feeding tube was hooked to pump which was in the backpack on his chair. So, out came Casey's feeding tube with the balloon fully inflated! Ouch! Nurse Julie jumped to help and somehow tripped over Jaxon who thought she wanted to play so he started running around like a mad dog, and Julie landed in a not pretty way, but didn't land on a boy, so that's a good thing (they are laying on mattresses on the floor in the living room) but she did manage to break the end of the plunger piece of a syringe--who knows! All is good. Gene put Casey's g-tube back in--with only "a little dog hair attached to it" he said, ha ha. I missed the whole scene!
They've both been given Tylenol just to ward off any aches or ouchies and are watching a movie. Early to bed for both. Casey always seems a little pale and woozy after his infusion but Colin is as perky as always.
I have to go clean up their room (looks like a whirlwind was in there!) and put away things from our trip today and make formula. Oh, and I have to try to ready the 'aunt' room because Peggy will be arriving on Thursday!!!!
We thought Nurse Lauren was going to work today but she woke up with a cold. So it was just me and Nurse Julie. Of course my timing of everything was off but we made it out of here only about 5 or 10 minutes later than planned.
Hit registration, which took a while, and then we went to the Comfort Zone. They put us in a big room so we could be all together so that was good. Casey went first. After a lot of looking and warming up various parts, they tried his foot (where it was successful last time) but it was a no go. Then they got his left antecubital on the first try, whew! Casey kept everyone on their toes talking about his Google maps and songs and such. They got Colin on the first try in his left antecubital as well. Another whew! His poor little hands were dripping with sweat but he was congenial. The Comfort Zone nurses are used to working with kids so we had lots of joking around and some singing, oh my.
Headed up to the Children's Center. Some waiting. Check vitals. Head to the Bay. We waited to make sure their pre-infusion labs were good and then we got them out of their chairs and settled onto the beds.
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| Colin all snuggled and watching a Charlie Brown's Thanksgiving while getting his infusion. |
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| Casey is Google Mapping and chatting on his DynaVox while his infusions run. |
Casey had the Child Life Specialist, Jenny, to himself for a while and he loved it. They have developed a relationship over these visits and enjoy each other. She is a good sport. She takes Casey's orders for this or that movie and tries to figure out what he wants. "Man, movie, funny...Christmas." They finally figured out he wanted the Jim Carrey's version of How the Grinch Stole Christmas and they didn't have it anywhere in the hospital! They both got a chuckle out of that. And, it's not on Netflix, either because she went and got an ipad and tried.
Colin was pretty easy today. Some ows and one change of movie because he decided he didn't like it but other than that it was just routine.
Saw Dr. Zimacus, the endocrinologist. Talked about maybe jump starting Casey's puberty with testosterone injections. That's all I'll say here :)
Our only downfalls were: both Julie and I forgetting to give the boys their 1 o'clock feeds, and Julie forgetting to bring an extra Trilogy battery. Not bad for a long day at the hospital.
We actually had infusions done by 2:30 or so. Packed up, in chairs, with coats on by 2:40. Got the van by 2:50 and home by 3:20.
Again, I am soo thankful for our van, Nurse Julie and our hospital being so close and being so good to us.
Got home and started getting settled and Paul from Apria came with Colin's new heater. VERY long story short, Colin's heater crapped out on Thursday. Sent a script for new one to Apria on Friday. Apria came back saying they can't provide such a thing and to find a new DME. PFFFTTT! Luckily, we have two. What would we have done if we didn't have 2???? Colin could NOT have gone from Thursday to Tuesday with out a heated humidifier. Anyway, Apria couldn't figure out how to get one/bill one so they gave us one they had. I appreciate that but find it totally wacked out that they couldn't figure out the paperwork and how to bill for one. So many stupid changes going on.
While Paul and I were talking in the hallway, some drama was taking place in the living room. Gene was lifting Casey of out his chair thinking that everything was unhooked. Nope. Feeding tube was hooked to pump which was in the backpack on his chair. So, out came Casey's feeding tube with the balloon fully inflated! Ouch! Nurse Julie jumped to help and somehow tripped over Jaxon who thought she wanted to play so he started running around like a mad dog, and Julie landed in a not pretty way, but didn't land on a boy, so that's a good thing (they are laying on mattresses on the floor in the living room) but she did manage to break the end of the plunger piece of a syringe--who knows! All is good. Gene put Casey's g-tube back in--with only "a little dog hair attached to it" he said, ha ha. I missed the whole scene!
They've both been given Tylenol just to ward off any aches or ouchies and are watching a movie. Early to bed for both. Casey always seems a little pale and woozy after his infusion but Colin is as perky as always.
I have to go clean up their room (looks like a whirlwind was in there!) and put away things from our trip today and make formula. Oh, and I have to try to ready the 'aunt' room because Peggy will be arriving on Thursday!!!!
Wednesday, May 8, 2013
4 Pamidronate infusions down; four more to go
We made it through another long day at Fletcher Allen Health Care getting Pamidronate infusions. The boys are getting these in hopes of increasing their overall bone health and, hopefully, avoid breaks. The boys have each had a couple of broken bones but we truly have been lucky in only having a few compared to many kids that suffer multiple breaks. And, all the breaks we've had have been before we started the infusions.
Anyway, once again it took us longer to get the boys ready for the day, up in their chairs and out the door but we made it to the Children's Specialty Center by 9:50 which was only 5 minutes past my goal :) We had to wait a few minutes before we were called back, but not very long. Vitals taken and weights recorded and then we went and settled into the infusion bay.
We got Casey onto the bed and comfy. He certainly had his moments of grumpiness and loud vocalizations but he also cooperated and read some of the Spark notes on My Sister's Keeper with me. The child life specialist also came and spent some time with him chatting and changing the TV and movies. We all had our turn entertaining him!
Colin stayed in his chair but next time we'll get him out so he can be repositioned better. He gave us a lot of "ows" but mostly because he didn't like that he had to keep his arm as straight as he could. the nurses got right to warming up both boys arms with hot packs and towels. The IV nurse got his vein on the first 'pick'! She drew the pre-infusion labs (calcium and phosphorus) and also Vitamin D that I had requested since we've upped the boys daily dose in hopes of getting their levels up.
Dr. Zimacas came in and I updated him on the boys diets/supplements. He'd like them to be getting more calcium so I'm going to ask our nutritionist to sit down with me and work on the boys diets. It's been about almost two years since we've taken a detailed look at everything. The boys nutrition labs have been good so I'm not wanting to change much but I'm sure it will be good to go over everything again.
Both boys were examined by Dr. Z. May need to get an ultrasound of Colin's 'package' but he said it's low on the priority list and not to worry too much. We may need to look at jump starting Casey's puberty but we've still got time so nothing to do in the short term.
We will schedule the boys for a dexascan next time to see if we can get a picture of their bone health. Years ago we had them done and the results were not very valid. With Casey's fusion hardware and how we positioned Colin they didn't get great pictures. This next time we'll look at different areas to scan on the boys and hope we can get a baseline so that when we're done with our two years we'll take another scan and hopefully see that we've been making a positive difference. Of course, not having any future breaks will be the real test, and the best reward!
All in all, everything went pretty smoothly. Casey got pretty chokey and full of secretions at the end and Nancy had to trach suction him several times. Next time we'll bring up our cough machine or order one from respiratory. MAYbe we'll have the new, portable version and it will be easy to carry instead of having to bring the big ole honker on the luggage rack. I gave Dr. Lahiri a list of things to put on a script for the Respironics T70 Cough Assist. I've been waiting for the branch manager at our Apria to look into getting one but I don't think he's looking very hard. If he has the script from the doc he'll have to start doing some fancy footwork, I hope.
We got home at about 3:30--took awhile to cough Casey in the valet parking area and get them loaded up and on our way home, but we did it!
Casey clicked some channels in the yellow room for a while. Colin went right to his mattress with a big "AAAHHHHHH" and has been happy with his shows. Brooke is here for the evening so she's wii-ing with the boys. Colin is intent on watching and Casey is spacing out watching some football and being very quiet. Casey seems to be affected a bit more by the Pamidronate than Colin. He'll be back to his feisty self in the AM.
Sorry no pics! I could have taken some with the ipad but didn't think of it until now :)
Anyway, once again it took us longer to get the boys ready for the day, up in their chairs and out the door but we made it to the Children's Specialty Center by 9:50 which was only 5 minutes past my goal :) We had to wait a few minutes before we were called back, but not very long. Vitals taken and weights recorded and then we went and settled into the infusion bay.
We got Casey onto the bed and comfy. He certainly had his moments of grumpiness and loud vocalizations but he also cooperated and read some of the Spark notes on My Sister's Keeper with me. The child life specialist also came and spent some time with him chatting and changing the TV and movies. We all had our turn entertaining him!
Colin stayed in his chair but next time we'll get him out so he can be repositioned better. He gave us a lot of "ows" but mostly because he didn't like that he had to keep his arm as straight as he could. the nurses got right to warming up both boys arms with hot packs and towels. The IV nurse got his vein on the first 'pick'! She drew the pre-infusion labs (calcium and phosphorus) and also Vitamin D that I had requested since we've upped the boys daily dose in hopes of getting their levels up.
Dr. Zimacas came in and I updated him on the boys diets/supplements. He'd like them to be getting more calcium so I'm going to ask our nutritionist to sit down with me and work on the boys diets. It's been about almost two years since we've taken a detailed look at everything. The boys nutrition labs have been good so I'm not wanting to change much but I'm sure it will be good to go over everything again.
Both boys were examined by Dr. Z. May need to get an ultrasound of Colin's 'package' but he said it's low on the priority list and not to worry too much. We may need to look at jump starting Casey's puberty but we've still got time so nothing to do in the short term.
We will schedule the boys for a dexascan next time to see if we can get a picture of their bone health. Years ago we had them done and the results were not very valid. With Casey's fusion hardware and how we positioned Colin they didn't get great pictures. This next time we'll look at different areas to scan on the boys and hope we can get a baseline so that when we're done with our two years we'll take another scan and hopefully see that we've been making a positive difference. Of course, not having any future breaks will be the real test, and the best reward!
All in all, everything went pretty smoothly. Casey got pretty chokey and full of secretions at the end and Nancy had to trach suction him several times. Next time we'll bring up our cough machine or order one from respiratory. MAYbe we'll have the new, portable version and it will be easy to carry instead of having to bring the big ole honker on the luggage rack. I gave Dr. Lahiri a list of things to put on a script for the Respironics T70 Cough Assist. I've been waiting for the branch manager at our Apria to look into getting one but I don't think he's looking very hard. If he has the script from the doc he'll have to start doing some fancy footwork, I hope.
We got home at about 3:30--took awhile to cough Casey in the valet parking area and get them loaded up and on our way home, but we did it!
Casey clicked some channels in the yellow room for a while. Colin went right to his mattress with a big "AAAHHHHHH" and has been happy with his shows. Brooke is here for the evening so she's wii-ing with the boys. Colin is intent on watching and Casey is spacing out watching some football and being very quiet. Casey seems to be affected a bit more by the Pamidronate than Colin. He'll be back to his feisty self in the AM.
Sorry no pics! I could have taken some with the ipad but didn't think of it until now :)
Tuesday, February 5, 2013
Pamidronate Infusions, ugh
So we're here. Casey went in first. Infusion Bay is very busy today. They only had space for one boy at first so we volunteered Casey.
Julie and I got him out of his chair and comfy on the bed. IV came right in to get him started. He needed some warm packs and towels because his hands and arms were freezing, but it's about 8 degrees out so I'm not surprised.
IV Nurse Micki got his IV in pretty quickly (for us, anyway). Success on first try in left wrist.
Colin was another story. He ended up with 3 picks, total. One successful, finally. I was not happy but I didn't actually see when they were poking. Colin was a trooper although he did "OW" a lot and had shed a tear, but no full blown crying. It took the two IV nurses trying but they were successful in his left antecubital.
Colin was very happy watching movies. His first one was Tron. After that I tried reading City of Orphans with him but didn't get too far. He is going to be in big trouble with Priscilla tomorrow because we didn't read as far as we were supposed to. Funny how during the movie he hardly "owed" at all but when I was reading he was full of "ows."
Casey went through periods of being good and being very needy. He had a grand time yanking the Child Life Specialist's chain :) Jenny was a good sport about it and played along with him. He was telling her that he wanted a funny movie/show about animals that is normally on during the day. He had her scouring the Internet looking for this show--that doesn't exist, lol! I think she was impressed with his DynaVox use and tried to honor his requests.
Casey was done right at 2:00. The nurse had called ahead to Dr. Hubbell's office to say we might be a tad late. We only had to wait for a minute before they took us back and Dr. Hubbell came in right away. Casey has only one tube which is in his right ear (he's been like this for a couple of years now). The left ear looked perfect. His right ear had lots of 'debris' that Dr. Hubbell sucked out. Julie and I both wish that the suction tubing was clear so we could see what gunk came out of him, lol! He also looked in the back of his throat because Casey had said it hurt yesterday but it looked nice and healthy to him.
Interesting aside here. Yesterday Casey told Julie several times that his throat hurt. She looked in his mouth and felt around but didn't see anything concerning. Then, at bed time, I could hear something in Casey's throat when I suctioned his mouth. It took a lot of work--coughing, saline and pressing on his tongue--but I got a pretty large plug out that was very stringy. I wonder if that was bugging/hurting him????? With Casey, it's hard much of the time to know when he's being serious or just telling us tales, so this was interesting to me.
Colin was still infusing when we were done so Julie and Casey packed themselves up and went downstairs to check out the gift shop.
Finally, Colin was done infusing and had his saline flush and was done by 3:00.
Headed down to find Casey and Julie. Got the van. Loaded up. Julie drove home.
It was a very weird drive home. Casey was quiet as a mouse and we are NOT used to that! I kept asking Nancy if they were okay back there.
These infusions sure wipe the boys out. Casey even more so than Colin. Casey looks pale and puffy and tired. Colin looks a little pale but is quite full of it and is yelling at Aunt Chris while she plays wii. Casey goes from being very quiet to fussing loudly, doing a little talking on his DynaVox.
I felt very comfortable driving the van. It sits higher than our old van and the nose is longer but it was pretty easy to drive. YAY!! It will take us a little bit longer to get used to tying down the boys chairs but we did pretty well. It would help if it wasn't as cold so we could be more comfortable while we work on positioning and all that. But it's nice to have these Q'Straint QRT Max tie downs. It literally takes one hand to secure them and one foot and a hand to undo them. So much nicer than our old ones that I don't even know the name of!
Julie and I got him out of his chair and comfy on the bed. IV came right in to get him started. He needed some warm packs and towels because his hands and arms were freezing, but it's about 8 degrees out so I'm not surprised.
IV Nurse Micki got his IV in pretty quickly (for us, anyway). Success on first try in left wrist.
Colin was another story. He ended up with 3 picks, total. One successful, finally. I was not happy but I didn't actually see when they were poking. Colin was a trooper although he did "OW" a lot and had shed a tear, but no full blown crying. It took the two IV nurses trying but they were successful in his left antecubital.
Colin was very happy watching movies. His first one was Tron. After that I tried reading City of Orphans with him but didn't get too far. He is going to be in big trouble with Priscilla tomorrow because we didn't read as far as we were supposed to. Funny how during the movie he hardly "owed" at all but when I was reading he was full of "ows."
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| Woozy Colin. |
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| Grump and woozy Casey |
Casey was done right at 2:00. The nurse had called ahead to Dr. Hubbell's office to say we might be a tad late. We only had to wait for a minute before they took us back and Dr. Hubbell came in right away. Casey has only one tube which is in his right ear (he's been like this for a couple of years now). The left ear looked perfect. His right ear had lots of 'debris' that Dr. Hubbell sucked out. Julie and I both wish that the suction tubing was clear so we could see what gunk came out of him, lol! He also looked in the back of his throat because Casey had said it hurt yesterday but it looked nice and healthy to him.
Interesting aside here. Yesterday Casey told Julie several times that his throat hurt. She looked in his mouth and felt around but didn't see anything concerning. Then, at bed time, I could hear something in Casey's throat when I suctioned his mouth. It took a lot of work--coughing, saline and pressing on his tongue--but I got a pretty large plug out that was very stringy. I wonder if that was bugging/hurting him????? With Casey, it's hard much of the time to know when he's being serious or just telling us tales, so this was interesting to me.
Colin was still infusing when we were done so Julie and Casey packed themselves up and went downstairs to check out the gift shop.
Finally, Colin was done infusing and had his saline flush and was done by 3:00.
Headed down to find Casey and Julie. Got the van. Loaded up. Julie drove home.
It was a very weird drive home. Casey was quiet as a mouse and we are NOT used to that! I kept asking Nancy if they were okay back there.
These infusions sure wipe the boys out. Casey even more so than Colin. Casey looks pale and puffy and tired. Colin looks a little pale but is quite full of it and is yelling at Aunt Chris while she plays wii. Casey goes from being very quiet to fussing loudly, doing a little talking on his DynaVox.
I felt very comfortable driving the van. It sits higher than our old van and the nose is longer but it was pretty easy to drive. YAY!! It will take us a little bit longer to get used to tying down the boys chairs but we did pretty well. It would help if it wasn't as cold so we could be more comfortable while we work on positioning and all that. But it's nice to have these Q'Straint QRT Max tie downs. It literally takes one hand to secure them and one foot and a hand to undo them. So much nicer than our old ones that I don't even know the name of!
Tuesday, November 27, 2012
MDA clinic and Red Sox players
What a day! It was overall successful, it's just tiring packing the boys up, seeing lots of docs, and heading home. That sentence sure doesn't fit how tiring it really is!
But, we made it out of here at about 8:30. Luckily I had 2 nurses today--Julie and Nancy L. Gene was too sick to come.
We still had to wait a bit even though we got there on time. Sometimes it doesn't pay to rush, sigh. Oh, and there were snow squalls and I was getting nervous, but when we hit Chimney Corners, they pretty much stopped. It's weird how sometimes it ONLY snows in Milton.
Nurse Jackie Schwartz put us in a treatment room instead of one of the small rooms that we usually go in. She said she cringed when she saw us packed in the room last clinic. We had one boy in the room and one boy in the hall last time. I have no clue why they made the rooms so small.
We saw Dr. Bingham, the neurologist first. Talked quite a bit about Casey and his sometimes holding his pee. No real answers, but he said maybe we can get a urinalysis done just to rule out anything. He didn't give us an order but said that Dr. Donna can write an order if we wish to do that. Updated him on both boys. He's going on sabbatical for 5 months so we probably won't see him next clinic time. Oh, and we were talking about their switches and tired fingers and he mentioned that he knows a doctor/engineer that is into how people drive wheelchairs with switches. Well, isn't that just up our alley? He said he'd get us in touch with him. I think he said his name is Dr. Christiansen. I hope he doesn't forget. Saw Dr. Lariri (pulmonologist). Updated him. Nothing much different. Talked about Casey's humidifier/heater, Colin's bipap dependence. Then saw Dr. Benjamin, rehab doc. He's going to write a script for Colin to get solid AFOs for standing. I showed him the pics of Colin standing with his knees bent and he was okay with it. Saw nutrition-not Linda LaShure. Updated her.
Poor Casey was out of sorts. He had 'stuff' in his trach and wanted a cough. We were all bundled up and ready to head out to the van. Went to the lobby of the Children's Center and there were two Red Sox players!! They were on a goodwill tour of hospitals around New England. Casey didn't want to see them, at first, and he and Julie started out to the van but I wasn't going to let this opportunity pass, trach secretions and all, lol! I had to sign something allowing the hospital to take pics, etc. Both boys were presented with a stuffed Wally. They got their pictures taken with Ryan Lavarnway #60 and Pedro Ciriaco# 77, catcher and shortstop respectively. They were very nice. I think they were a little overwhelmed with Casey's DynaVox--they didn't quite know what to make of it. I wish Casey had been feeling better because he really would have enjoyed it better. Colin was thrilled and when we left he kept saying more, more, more. He wanted to hang out with them some more! And, of course, when Casey finally got his cough he felt better and wanted to go back up. Oh well.
And that was that. Another clinic down.
Mel came for about an hour and did some DynaVox things with Casey. Colin got out of school totally because Priscilla got called to a meeting. Colin was quite happy to play some Sponge Bob computer game with Nancy.
But, we made it out of here at about 8:30. Luckily I had 2 nurses today--Julie and Nancy L. Gene was too sick to come.
We still had to wait a bit even though we got there on time. Sometimes it doesn't pay to rush, sigh. Oh, and there were snow squalls and I was getting nervous, but when we hit Chimney Corners, they pretty much stopped. It's weird how sometimes it ONLY snows in Milton.
Nurse Jackie Schwartz put us in a treatment room instead of one of the small rooms that we usually go in. She said she cringed when she saw us packed in the room last clinic. We had one boy in the room and one boy in the hall last time. I have no clue why they made the rooms so small.
We saw Dr. Bingham, the neurologist first. Talked quite a bit about Casey and his sometimes holding his pee. No real answers, but he said maybe we can get a urinalysis done just to rule out anything. He didn't give us an order but said that Dr. Donna can write an order if we wish to do that. Updated him on both boys. He's going on sabbatical for 5 months so we probably won't see him next clinic time. Oh, and we were talking about their switches and tired fingers and he mentioned that he knows a doctor/engineer that is into how people drive wheelchairs with switches. Well, isn't that just up our alley? He said he'd get us in touch with him. I think he said his name is Dr. Christiansen. I hope he doesn't forget. Saw Dr. Lariri (pulmonologist). Updated him. Nothing much different. Talked about Casey's humidifier/heater, Colin's bipap dependence. Then saw Dr. Benjamin, rehab doc. He's going to write a script for Colin to get solid AFOs for standing. I showed him the pics of Colin standing with his knees bent and he was okay with it. Saw nutrition-not Linda LaShure. Updated her.
Poor Casey was out of sorts. He had 'stuff' in his trach and wanted a cough. We were all bundled up and ready to head out to the van. Went to the lobby of the Children's Center and there were two Red Sox players!! They were on a goodwill tour of hospitals around New England. Casey didn't want to see them, at first, and he and Julie started out to the van but I wasn't going to let this opportunity pass, trach secretions and all, lol! I had to sign something allowing the hospital to take pics, etc. Both boys were presented with a stuffed Wally. They got their pictures taken with Ryan Lavarnway #60 and Pedro Ciriaco# 77, catcher and shortstop respectively. They were very nice. I think they were a little overwhelmed with Casey's DynaVox--they didn't quite know what to make of it. I wish Casey had been feeling better because he really would have enjoyed it better. Colin was thrilled and when we left he kept saying more, more, more. He wanted to hang out with them some more! And, of course, when Casey finally got his cough he felt better and wanted to go back up. Oh well.
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| I only got one picture because I don't have a smartphone but one of the hospital people took this and emailed it to me. Poor Casey was a grump! |
And that was that. Another clinic down.
Mel came for about an hour and did some DynaVox things with Casey. Colin got out of school totally because Priscilla got called to a meeting. Colin was quite happy to play some Sponge Bob computer game with Nancy.
Tuesday, November 6, 2012
Another round of Pamidronate Infusions
2 down (the ones we did several years ago don't count :( ) and 6 to go. After the 2 year mark we will re-evaluate. FYI, Pamidronate is in the bisphosphonate family and is used as prevention and treatment of osteoporosis. It's in the same family as Boniva that is touted on daytime TV by Sally Fields.
We were all pooped out by the time we got back home but things went pretty smoothly, it's just a lot of stress and I'm sure it's not a picnic for the boys to have an IV in with medicine going in...
Colin was the first to have the IV nurse work on him. It took some hot packs and a lot of looking, looking, looking before she found a tiny vein. She got it on the first try and was able to draw what they need to check before the infusions are given, as well as the Quantitative Amino Acid profile that we needed for nutrition. We were very careful with his arm and hoped that the vein would last through the treatment, and it did! The IVs nurses name was Sue/Susan and had a lot of experience--will remember her for next time. She was successful getting Colin's in on the top of his left hand.
Colin half-hardheartedly would "ow, ow" and want me to put the hot pack over his IV but really he did great. He picked National Treasure to watch and was transfixed the whole time. He wants Aunt Chris to buy him the sequel. He watched part of one of the Pirates of the Caribbean movies but we were out of there before it was over.
The IV nurse had a time finding a vein on Casey, too. She ended up getting it in his left wrist. Julie said that's where he had it last time. His lasted the entire infusion as well.
Casey watched Drumline and some sports and was pretty quiet the whole time. Julie got him out of his chair and all comfy on the hospital bed.
Dr Zimacas (endo) came in and went over a few things. He'll skip seeing us next infusion and see us at the one after that.
Dr. Lahiri (pulmonary) came in and I asked him to up Colin's settings on his vents/bipaps. He was fine with it. Colin's daytime settings went from 19/4 to 21/5. His AVAPs, nighttime setting will stay the same. It's set to give him a tidal volume of 200cc so his pressures will go anywhere from 19-25.
Candy came in to schedule next infusion which will be February 5th. I really hate going to the hospital during the flu season but it's got to be done. We have to keep on track so we can get these infusions DONE.
Found out we're due for MDA clinic on November 27th. We'll see Dr. Lahiri, Dr. Benjamin (rehab) and Dr. Bingham (neuro) and Linda LaShure the dietician. We had labs drawn for D3 so we'll see if the 800units we're currently supplementing with is enough. Have to look at calcium, too.
Oh, and we weighed the boys this morning. Colin is 49 pounds and Casey is 70 pounds. No changes from last time they were weighed about 3 months ago, but that's okay.
All in all we were there from 10:00 and were done at 2:30. I think that's pretty darn good.
Stopped by the gift shop.
Ordered a pizza from NY Pizza oven so we drove home through the bay.
Gave the boys some Tylenol when we got home. Casey wanted to hang in his 'old' room so Julie set him up with his e-reader listening to Marcello in the Real World. She had a bunch of his fish/dolphin lights on so he was happy. He was very quiet and pale and sleepy looking. Colin seemed pretty normal. He watched his shows in the living room.
Headed to bed early. Boys were out quickly. I slept in bed with them so they would feel extra safe and comfy. They slept really, really well.
I got up around 1:30 to check out the election results and was happy :) Went back to bed and slept like a baby.
We were all pooped out by the time we got back home but things went pretty smoothly, it's just a lot of stress and I'm sure it's not a picnic for the boys to have an IV in with medicine going in...
Colin was the first to have the IV nurse work on him. It took some hot packs and a lot of looking, looking, looking before she found a tiny vein. She got it on the first try and was able to draw what they need to check before the infusions are given, as well as the Quantitative Amino Acid profile that we needed for nutrition. We were very careful with his arm and hoped that the vein would last through the treatment, and it did! The IVs nurses name was Sue/Susan and had a lot of experience--will remember her for next time. She was successful getting Colin's in on the top of his left hand.
Colin half-hardheartedly would "ow, ow" and want me to put the hot pack over his IV but really he did great. He picked National Treasure to watch and was transfixed the whole time. He wants Aunt Chris to buy him the sequel. He watched part of one of the Pirates of the Caribbean movies but we were out of there before it was over.
The IV nurse had a time finding a vein on Casey, too. She ended up getting it in his left wrist. Julie said that's where he had it last time. His lasted the entire infusion as well.
Casey watched Drumline and some sports and was pretty quiet the whole time. Julie got him out of his chair and all comfy on the hospital bed.
Dr Zimacas (endo) came in and went over a few things. He'll skip seeing us next infusion and see us at the one after that.
Dr. Lahiri (pulmonary) came in and I asked him to up Colin's settings on his vents/bipaps. He was fine with it. Colin's daytime settings went from 19/4 to 21/5. His AVAPs, nighttime setting will stay the same. It's set to give him a tidal volume of 200cc so his pressures will go anywhere from 19-25.
Candy came in to schedule next infusion which will be February 5th. I really hate going to the hospital during the flu season but it's got to be done. We have to keep on track so we can get these infusions DONE.
Found out we're due for MDA clinic on November 27th. We'll see Dr. Lahiri, Dr. Benjamin (rehab) and Dr. Bingham (neuro) and Linda LaShure the dietician. We had labs drawn for D3 so we'll see if the 800units we're currently supplementing with is enough. Have to look at calcium, too.
Oh, and we weighed the boys this morning. Colin is 49 pounds and Casey is 70 pounds. No changes from last time they were weighed about 3 months ago, but that's okay.
All in all we were there from 10:00 and were done at 2:30. I think that's pretty darn good.
Stopped by the gift shop.
Ordered a pizza from NY Pizza oven so we drove home through the bay.
Gave the boys some Tylenol when we got home. Casey wanted to hang in his 'old' room so Julie set him up with his e-reader listening to Marcello in the Real World. She had a bunch of his fish/dolphin lights on so he was happy. He was very quiet and pale and sleepy looking. Colin seemed pretty normal. He watched his shows in the living room.
Headed to bed early. Boys were out quickly. I slept in bed with them so they would feel extra safe and comfy. They slept really, really well.
I got up around 1:30 to check out the election results and was happy :) Went back to bed and slept like a baby.
Tuesday, July 3, 2012
Pamidronate infusions and 3 broken things
We're back from the boys Pamindronate Infusions. We got there about 10:00 and were downstairs waiting for the van by 2:25--not too bad--and home by 3:00.
We had a good IV nurse who got a vein first try for each boy. Whew! Tylenol given via g-tube, labs drawn, 1 hour of saline via IV, 2 hours of Pamindronate via IV, short flush and done!
Casey was the needier one, as usual. He wanted a movie. He wanted a different movie. He wanted music. He wanted a different artist. He wanted TV. He wanted football on the ipad. He wanted a different football game. So on and so forth.
Colin was pretty happy with Nick on TV and then Honey, I Blew Up the Kids. He was kind of vocal saying "ow, ow, ow" about his IV and "out, out, out" wanting to go home, but he only high heartrated once when he was getting his arm assessed.
I almost cried when a little boy, maybe 3, came in and got so upset about having to have his infusion. Must have been a maintenance drug for some type of cancer. He was screaming "I don't WANT to do this! I don't LIKE this! PLEASE don't make me do this!" Totally hurt my heart.
``````````````````
Broken thing #1 Colin's new chair has squeeze handles to change the tilt and recline. Well, Colin will tilt no more, until we get that fixed. Apparently when Casey was loaded into the van today he crushed Colin's handle with his chair and when we got up to the infusion bay we noticed that it was broken off. BIG bad, bummer.
Broken thing #2 Colin's newish Nasal Aire's (his bipap nasal prongs) cracked. It happens quite often, which sucks because we can only get so many in a period of time. We buy them out of pocket as we need them.
Broken thing #3 The van is making awful noises. The guys at the valet parking at the hospital said it sounds like a CV joint. Well, I said that to Gene when we got home and he laughed and said we don't have CV joints because it's rear wheel drive and has axles. But something is obviously wrong! Our inspection ran out the end of June...I hope Gene brings it to some reputable place and gets it checked out and inspected.
``````````````````
So, right now both boys are hanging in the living room waiting for Julie to play a little wii. They look pale, but they are both full of piss and vinegar, so, hopefully, we won't get any of the flu-like side effects that we had last time.
We had a good IV nurse who got a vein first try for each boy. Whew! Tylenol given via g-tube, labs drawn, 1 hour of saline via IV, 2 hours of Pamindronate via IV, short flush and done!
Casey was the needier one, as usual. He wanted a movie. He wanted a different movie. He wanted music. He wanted a different artist. He wanted TV. He wanted football on the ipad. He wanted a different football game. So on and so forth.
Colin was pretty happy with Nick on TV and then Honey, I Blew Up the Kids. He was kind of vocal saying "ow, ow, ow" about his IV and "out, out, out" wanting to go home, but he only high heartrated once when he was getting his arm assessed.
I almost cried when a little boy, maybe 3, came in and got so upset about having to have his infusion. Must have been a maintenance drug for some type of cancer. He was screaming "I don't WANT to do this! I don't LIKE this! PLEASE don't make me do this!" Totally hurt my heart.
``````````````````
Broken thing #1 Colin's new chair has squeeze handles to change the tilt and recline. Well, Colin will tilt no more, until we get that fixed. Apparently when Casey was loaded into the van today he crushed Colin's handle with his chair and when we got up to the infusion bay we noticed that it was broken off. BIG bad, bummer.
Broken thing #2 Colin's newish Nasal Aire's (his bipap nasal prongs) cracked. It happens quite often, which sucks because we can only get so many in a period of time. We buy them out of pocket as we need them.
Broken thing #3 The van is making awful noises. The guys at the valet parking at the hospital said it sounds like a CV joint. Well, I said that to Gene when we got home and he laughed and said we don't have CV joints because it's rear wheel drive and has axles. But something is obviously wrong! Our inspection ran out the end of June...I hope Gene brings it to some reputable place and gets it checked out and inspected.
``````````````````
So, right now both boys are hanging in the living room waiting for Julie to play a little wii. They look pale, but they are both full of piss and vinegar, so, hopefully, we won't get any of the flu-like side effects that we had last time.
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