I'm glad today is almost over - it's been a busy, crazy day! We spent most of it in Rochester. When I say we, I mean me, Daddy, and Sax since Raine had school today. It was a day of combined appointments. And, unfortunately, I have no pictures to share from today.
My first appointment was at 7:15 am, so we had to leave home by 5:30. Sax isn't allowed to come into the ultrasound room, so he had to stay in the waiting room with Daddy. By the time I came back out, they had already left to go to Sax's first appointment, which was his PFTs at 8 am. I caught up with the just as they were getting ready to check in. Sax asked Daddy to go back with him when it was time for the actual test, so I camped out in the waiting room with my crocheting. Scot said he did really well and was anxious to get the results, which we wouldn't see until Sax's last appointment.
After he finished his PFTs, we headed over to Peds for an appointment with the social worker. This appointment was scheduled for 8:45 - but she didn't get there until after 9:30. Wow. We had requested the appointment with her because we are having some behavioral issues with Saxon. We're not sure if it has anything to do with the baby on the way, because he never acted out like this when I was pregnant with Baden. I've been getting worried because tantrums can last up to 2 hours or sometimes more, and sometimes involve him hitting and kicking people or throwing things. We've both tried a variety of punishments, depending on the type of the tantrum and the behavior. Nothing has been effective and we're lost as to 1) what else to try and 2) why he is doing this. The only pattern we've noticed is that he claims to have "not gotten any rest" or he's "tired" and often correlates when he hasn't gone to bed on time the night before.
We're also concerned that he has started exhibiting some OCD-type behaviors. It's normal to wash your hands frequently, especially in the winter and especially when you are trying to avoid picking up germs. Saxon has starting washing his hands up to 10+ times per hour. If he touches the floor, if he touches his face, if he touches a toy that was outside, if he throws something away - almost any time he touches anything he insists on washing his hands with soap and water. His poor little hands are getting chapped from it.
We talked through all of Saxon's behaviors and possible solutions. She is referring us to some of her psychology associates to see what they suggest. The first possibility is he is having sleep issues that we don't know about. The other possibility she suggested was anxiety. She left us to our next appointment while she checked into what to do next.
Sax's appointment with Infectious Disease (aka our CF nurse Vicki) went well - we found out his weight is 2 pounds, his BMI is up, and he's grown 1/2". He did pretty good getting his throat culture - although Daddy had to hold his hands down so he wouldn't push Vicki away. Vicki set us up for our next appointments for Saxon. He'll be due back the beginning of March, so she put an order in for the first week since Baby Bump may be arriving any time in March. Sax will be doing PFTs and meeting with GI, ENT, Infectious Disease, Pulmonology, and Social Work.
Vicki also told us that they are in the process of becoming an "accredited" CF center. Currently they treat CF but are not accredited, but that doesn't matter to us. We were told the only way it really changes is that at his appointment around his birthday, Sax will have all day appointments (which we already do anyway) from about 7:30 am - 2 or 3 pm and will be meeting with a few more specialists than he normally sees now, like Respiratory Therapy and seeing Dietary more frequently.
Dr P was Sax's last appointment. We got his PFT results - 117%!! And it's only the 2nd time he's ever done PFTs! Overall Dr P thinks Sax is looking good, but is concerned about his keratosis. Saxon and I both suffer the same skin condition where our skin doesn't shed right, which results in dry skin and the appearance of bumps on our arms and legs. We are trying another kind of lotion to see if that helps, but we may end up vising Dermatology at some point.
Dr P also decided that, since Sax's sinuses cause so many problems, we are going to put him on a regular regimen of antibiotics to prevent his polyps from becoming infected. He's on a nasal inhaled steroid to help slow the growth of the polyps, but they don't prevent the infections. Most of his colds originate from his sinuses. Sax is currently on Bactrim 2x per day for a cold that he's just coming down from. For the next 3 months when this round is done, we are going to be doing Bactrim 1x per day, every day, for 2 weeks on then 2 weeks off, to see if that prevents some of these colds and sinus issues. If he gets sick in spite of this we will try to supplement with Augmentin.
We also decided on a new course of GI treatment. Miralax and Colace can both cause your body to become dependent on the stimulation to keep bowels regular. However, magnesium citrate does not have this same side effect. We've noticed since he's started taking it, Sax has been having a lot less tummy discomfort, he is much more regular, and we've been able to eliminate his other 'bowel maintenance' medications. Dr P agreed that we could continue with this course of treatment and reevaluate in 3 month.
While we were meeting with him, the social worker came back, consulted with him, and advised 2 current courses to pursue. 1) We were told to read a book on strong-willed children, follow suggestions in the book, and follow up with her in a week and 2) we will be pursuing the sleep study. She also suggested we have Sax's iron levels checked, so labs were added to our day today. (He did NOT like having his blood drawn - I could hear him screaming down the hall.)
Next week is going to be a bit of a stressful week. I will be taking Sax to his appointments by myself, which won't be a problem unless the weather gets bad. We have a consult on Tuesday. Wednesday he reports for the sleep study at 7 pm. One of us has to stay with him, which will be me since Scot will have to go to work in the morning. I'm a little anxious about it. I got some information about it and it doesn't sound like fun. I don't think Sax is going to like have probes glued to him along with the other monitors. We will be getting done sometime Thursday morning, then we'll have to be back on Friday to get the results. We were told that there is a possibility that we may be able to get the results on Thursday, which I'm going to ask about at the consult since it would save us some driving! At least we will know if his sleep is affecting his mood and temper after this! If not, at least we can cross something off our list!
After Sax was done, I had a checkup with my doc for Baby Bump, which everything is looking good other than my blood sugar being slightly elevated still. I had to get a new prescription for a glucose meter too since my insurance decided it wasn't going to cover strips for the meter I just got 2 months ago. They made me switch to a more complicated and more expensive meter. I swear, those people aren't very bright :/
After we were FINALLY done at the doctor's office, we made a few stops - went to the Girl Scout headquarters (which the store wasn't open, like I figured since it's Wednesday - so I'll have to go back next week), then Toys R Us (got a few Christmas presents even though Sax was with us!!) and Barnes and Noble (they didn't have the book, but Scot got a couple magazines and Sax got a few new things for home school!)
But me.... I was just glad to get home and relax.... It's been a loong day!
Showing posts with label Dr P. Show all posts
Showing posts with label Dr P. Show all posts
Wednesday, December 11, 2013
Saturday, May 11, 2013
Tune Up 1 Day 3
O.M.G.!!!!!
This little boy really needs an off switch or button!!! He is bouncing off the walls today!! That must mean he's feeling better. But I've had to threaten him with time-outs and taking away toys because he's taking things a little too far. He started to do the gator death roll while getting his antibiotics. That can cause his PICC line to come out if he pulls too hard on it, which would mean another surgery to put it back in. We've tried explaining that, but he's just not hearing us.
I know it's a little taxing to spend so much time in the room, but he hasn't been confined. We've been going down to the play room, but we've also explained that he has to do his treatments and medications or he will be here longer. Sax has also been chewing on his feet and sucking on his toes which, of course, is not a good thing either. Hopefully when he gets to go outside in a few days he can run off his pent up energy. I don't think it helps that, as much as I tried, I couldn't get Sax to take a nap.
I slept by Saxon for a little bit last night, but I just couldn't stay comfortable, so I went back to the window seat. I'm glad I did, because the night nurse said his nose had been bleeding during the night. She cleaned up his face pretty well but it was still on his pillow and blankets. After some breakfast, nasal spray, and morning meds and treatments, we figured a bath would be the best way to get him really cleaned up.
Have you ever tried to bathe a 4 year old with a PICC line in? Especially one as energetic as my son? Let me tell you, it was a very trying experience. His day nurse wrapped his PICC area in plastic wrap and then wrapped the rest in a stretchy rubbery tape.
She told us not to get it wet because he'd have to have it redone. I only put a couple of inches of water in the tub, but still had to cut his bath short. He just couldn't understand he shouldn't get it wet. He would ask me if he could put his arm in the water, I'd say no, and he'd try doing it anyway. It was hard enough trying to get his hair washed without getting the bandages wet. On the plus side, they gave us baby shampoo to use, so he smelled like baby soap and baby lotion when we snuggled afterward.
Since he had still been pretty good at that point, I agreed to go to the playroom for a while. I told him he could play until about noon because we had to go back, order, and eat before it was time for his afternoon thumpies and antibiotics. I was surprised when he didn't go straight to the computer and opted for a tote of cars and Monster trucks instead. He found a couple different tracks to drive them on and was quite content while I sat back and watched.
The weekend worker from Child Life came in to visit since we were the only ones in the playroom. Sax was interested in playing some board games, but we couldn't find any. All the cabinets have locks so we hadn't even looked in any of them. She pointed out the board game cabinet and told us it is never locked and we're welcome to take a game or a few back to the room with us if we'd like. When I asked about weekend activities, she said there would be one around 2. Unfortunately that is when he is scheduled for his meds. If we didn't make it back down there, she was going to bring the activity to us. Sounded like a good plan to me!!!
Dr Pianosi came to see us while we were still in the playroom too. We lucked out that it is his weekend to work. He repeated that Saxon's lungs looked really good on the bronchoscopy and asked if he'd been coughing. He seemed happy to hear that he has been quite a bit. As of right now, Sax's lung cultures are still only showing h. influenza, which is normal for him, along with a large amount of white blood cells. Sax's nasal cultures have started growing staph. I was just trying to absorb all the information, so I didn't ask him to elaborate on that. We'll see him again tomorrow so I'll be able to get more information about it. Dr P did order a change of antibiotics to treat the staph for now.
When we got back to Sax's room, we played a couple games of Candy Land after ordering lunch. It took over an hour for our lunch trays to come and they forgot some of the order, so that was a bit of an ordeal. Fortunately it's the only time it's happened and normally it doesn't take long for most meals to come.
After beating me twice in Candy Land, Sax threw a fit - and a few game pieces - because I drew a picture card and was close to winning. That was the end of playing that game!
Our lunch didn't show up until almost 1:30. By the time I got Sax's food cut, salted, and buttered, the nurse was already coming in to do his meds. Shortly after that, the RT showed up. Sax decided it was a good reason for him not to eat then. That was disappointing because he'd had such a good appetite the day before. He also had to have the cap changed on his PICC line. He didn't like having to wear a mask for it, but to make things easier, Buppy wore one too.
I suggested we nap for a bit since Daddy was coming to visit today. I told Sax that he would have a lot more energy if he got his nap out of the way, then he could play with Daddy a whole lot more. Child Life came in while I was trying to get him down. The volunteer that was supposed to come today didn't show up, so they didn't have a formal activity. Instead, she brought the planned activity to Sax's room for him to do - a ceramic elephant piggy bank to paint! That made him happy!! I still insisted he had to lay down for a bit longer and try to nap before he would get to paint. After another hour, I gave up and let him work on his project.
We played Go Fish until it was time for supper.
That didn't cause too many problems because I only won one game, and all the rest we either tied or he won.
Daddy got here after supper and made a certain little boy very happy with the gifts he brought - especially the balloons!
He also got cards from Grammy and Raine, along with a few presents, which he loved. It was difficult getting him to leave all of his stuff in his room so he could take Daddy to the playroom. But he forgot about that once he had the chance to show Daddy the trains, aquarium, and Monster trucks.
All of a sudden Sax grabbed his pants and said he had to use the bathroom. When he realized there wasn't a bathroom in the playroom and we would have to go back to his room, he changed his mind. I insisted we go back because I really wasn't in the mood for cleaning up any accidents. And that is when the tantrum began. Besides the yelling, which is pretty typical for him, he kicked off both shoes, then kicked them out into the hallway. I picked him up and started back to the room, and he yelled and cried the whole way. His punishment? No more play room for the day if he's going to act like that!!!
At least we had a nice view to accompany his 'musical' talents!
He finally settled down for his treatments when Daddy laid down with him in the hospital bed.
Since Daddy is here, I made a quick trip over to the NICU since it's night time. I wanted to see if our favorite NICU nurse was working. I was just going to leave a note letting her know that Sax was here and, if she had a chance to stop over, we'd like to see her. The receptionist said she was working and brought her out. She came over to Sax's room and visited with us for a little while. The kids loved her too, and she was so great with Baden. We still get cards from her and have sent a couple of our own to her via the hospital. She said she still thinks about our Little Warrior quite often - that little man who touches so many lives..... She's going to try to make it back later this week to visit again. I told her we'll be here all week!
Now, at 10:50 pm, Sax is watching 101 Dalmatians for the 10th or 11th time today... still not asleep.... I'm hoping he crashes soon because he is definitely overtired!!
This little boy really needs an off switch or button!!! He is bouncing off the walls today!! That must mean he's feeling better. But I've had to threaten him with time-outs and taking away toys because he's taking things a little too far. He started to do the gator death roll while getting his antibiotics. That can cause his PICC line to come out if he pulls too hard on it, which would mean another surgery to put it back in. We've tried explaining that, but he's just not hearing us.
I know it's a little taxing to spend so much time in the room, but he hasn't been confined. We've been going down to the play room, but we've also explained that he has to do his treatments and medications or he will be here longer. Sax has also been chewing on his feet and sucking on his toes which, of course, is not a good thing either. Hopefully when he gets to go outside in a few days he can run off his pent up energy. I don't think it helps that, as much as I tried, I couldn't get Sax to take a nap.
I slept by Saxon for a little bit last night, but I just couldn't stay comfortable, so I went back to the window seat. I'm glad I did, because the night nurse said his nose had been bleeding during the night. She cleaned up his face pretty well but it was still on his pillow and blankets. After some breakfast, nasal spray, and morning meds and treatments, we figured a bath would be the best way to get him really cleaned up.
Have you ever tried to bathe a 4 year old with a PICC line in? Especially one as energetic as my son? Let me tell you, it was a very trying experience. His day nurse wrapped his PICC area in plastic wrap and then wrapped the rest in a stretchy rubbery tape.
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| Showing off his arm wrap and a fishy toy behind his back |
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| This is his right arm - these spots are where they had originally tried putting in his PICC line. |
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| Being silly after his bath. |
The weekend worker from Child Life came in to visit since we were the only ones in the playroom. Sax was interested in playing some board games, but we couldn't find any. All the cabinets have locks so we hadn't even looked in any of them. She pointed out the board game cabinet and told us it is never locked and we're welcome to take a game or a few back to the room with us if we'd like. When I asked about weekend activities, she said there would be one around 2. Unfortunately that is when he is scheduled for his meds. If we didn't make it back down there, she was going to bring the activity to us. Sounded like a good plan to me!!!
Dr Pianosi came to see us while we were still in the playroom too. We lucked out that it is his weekend to work. He repeated that Saxon's lungs looked really good on the bronchoscopy and asked if he'd been coughing. He seemed happy to hear that he has been quite a bit. As of right now, Sax's lung cultures are still only showing h. influenza, which is normal for him, along with a large amount of white blood cells. Sax's nasal cultures have started growing staph. I was just trying to absorb all the information, so I didn't ask him to elaborate on that. We'll see him again tomorrow so I'll be able to get more information about it. Dr P did order a change of antibiotics to treat the staph for now.
When we got back to Sax's room, we played a couple games of Candy Land after ordering lunch. It took over an hour for our lunch trays to come and they forgot some of the order, so that was a bit of an ordeal. Fortunately it's the only time it's happened and normally it doesn't take long for most meals to come.
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| Contemplating where the picture is so he can jump ahead |
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| Loving the game!! |
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| Can you guess who's winning? |
Our lunch didn't show up until almost 1:30. By the time I got Sax's food cut, salted, and buttered, the nurse was already coming in to do his meds. Shortly after that, the RT showed up. Sax decided it was a good reason for him not to eat then. That was disappointing because he'd had such a good appetite the day before. He also had to have the cap changed on his PICC line. He didn't like having to wear a mask for it, but to make things easier, Buppy wore one too.
I suggested we nap for a bit since Daddy was coming to visit today. I told Sax that he would have a lot more energy if he got his nap out of the way, then he could play with Daddy a whole lot more. Child Life came in while I was trying to get him down. The volunteer that was supposed to come today didn't show up, so they didn't have a formal activity. Instead, she brought the planned activity to Sax's room for him to do - a ceramic elephant piggy bank to paint! That made him happy!! I still insisted he had to lay down for a bit longer and try to nap before he would get to paint. After another hour, I gave up and let him work on his project.
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| He got his own brand new set of paints with the piggy bank |
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| Trying to decide on the next color |
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| The artist hard at work - I love this picture of him!!!! |
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| His finished bank |
We played Go Fish until it was time for supper.
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| Mommy told him Go Fish! |
That didn't cause too many problems because I only won one game, and all the rest we either tied or he won.
Daddy got here after supper and made a certain little boy very happy with the gifts he brought - especially the balloons!
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| BALLOONS!!!! |
He also got cards from Grammy and Raine, along with a few presents, which he loved. It was difficult getting him to leave all of his stuff in his room so he could take Daddy to the playroom. But he forgot about that once he had the chance to show Daddy the trains, aquarium, and Monster trucks.
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| Which one is the little boy??? |
At least we had a nice view to accompany his 'musical' talents!
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| I love sunsets |
He finally settled down for his treatments when Daddy laid down with him in the hospital bed.
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| Like father, like son.... |
Since Daddy is here, I made a quick trip over to the NICU since it's night time. I wanted to see if our favorite NICU nurse was working. I was just going to leave a note letting her know that Sax was here and, if she had a chance to stop over, we'd like to see her. The receptionist said she was working and brought her out. She came over to Sax's room and visited with us for a little while. The kids loved her too, and she was so great with Baden. We still get cards from her and have sent a couple of our own to her via the hospital. She said she still thinks about our Little Warrior quite often - that little man who touches so many lives..... She's going to try to make it back later this week to visit again. I told her we'll be here all week!
Now, at 10:50 pm, Sax is watching 101 Dalmatians for the 10th or 11th time today... still not asleep.... I'm hoping he crashes soon because he is definitely overtired!!
Thursday, May 2, 2013
Time for a Tune-Up
We got the call we've been waiting for from the doctor's office. The plans are all set. Next Wednesday, May 8th, I'll be taking him in for an appointment with Dr Cofer, his ENT. This will be for his pre-op consult. I will have to call in on Wednesday night to find out his report time for Thursday. He will have surgery on Thursday. They will be doing a bronchoscopy along with removing the polyp. Marcia, the other CF nurse, said that the "gunk" in Saxon's nose is actually tissue - and the start of more polyps. Dr Cofer is going to clean all of that out. Then he will be admitted to the hospital for a 'tune-up'. I'm not sure what all that entails, but from asking a few friends with CF, it sounds like he will be doing extra treatments and IV antibiotics. Dr Cofer and Dr P want to be thorough. After they clean him out, they want to be sure we kill off all the bad stuff. Hopefully we'll be able to avoid antibiotics for a while then!!!!
He had never held a turtle before - and we saw 3 of them along the way! Mommy caught a little one to show him, then he caught these two. He was pretty excited!!! He really wanted to keep one and bring it home, but I convinced him that it was better to leave it there and we could come visit it on another walk.
We also spent quite a bit of time playing outside. The kids have taken some boards and old pallets and have been practicing hammering in nails. Sax was a little mad, if you can't tell, because he was pounding a nail into some wood "and I heard a plop. A bird pooped on my pants!!"
But check out that gorgeous sunset!!!
If only the great weather would have lasted.....
Because this morning, this is what we woke up to...
3 of the 4 sides of our fence were damaged by fallen branches. Scot didn't go in to work right away because the shop didn't have any power. The city police were contacting the television stations and telling everyone to stay off the roads because of downed power lines and trees. The kids enjoyed a snow day... on May 2!!!! Various parts of town ended up with 11-14" by the time it was done. It was heavy, wet snow, perfect for making a snowman.... or a snow fort.
The shoveling wasn't too easy though!! "This is hard work" as he is shoveling the neighbor's driveway.
In the mean time, we've been (trying to) enjoy the weather. The weekend was gorgeous - spring really was here with temps in the 70s, sunshine, and the grass started turning green! It was sooooo nice. We went for a few walks - one day around the lake, another day on the trail near our house. Sax enjoyed the trail more than the lake. You can see why....
We also spent quite a bit of time playing outside. The kids have taken some boards and old pallets and have been practicing hammering in nails. Sax was a little mad, if you can't tell, because he was pounding a nail into some wood "and I heard a plop. A bird pooped on my pants!!"
If only the great weather would have lasted.....
Because this morning, this is what we woke up to...
3 of the 4 sides of our fence were damaged by fallen branches. Scot didn't go in to work right away because the shop didn't have any power. The city police were contacting the television stations and telling everyone to stay off the roads because of downed power lines and trees. The kids enjoyed a snow day... on May 2!!!! Various parts of town ended up with 11-14" by the time it was done. It was heavy, wet snow, perfect for making a snowman.... or a snow fort.
The shoveling wasn't too easy though!! "This is hard work" as he is shoveling the neighbor's driveway.
Raine is really hoping there is school tomorrow. We're supposed to get a little more snow tonight and tomorrow, then it's supposed to switch over to rain. Our Great Strides walk is still on for Saturday - we're just a little bit worried about actually getting there if the roads are too bad. I hope so, cuz I dyed my hair, Saxon's hair, and Scot's goatee purple (well, mine and Scot's are actually dark burgundy.) Tomorrow I'm planning to do Raine's.
But maybe with this weather, we'll just need purple stocking caps??
Friday, April 26, 2013
Spring is finally here!!
It has been an odd spring so far.... especially considering we had a couple inches of snow only 3 days ago!! Today it was FINALLY warm enough to turn off the heat and to open all the windows in the house.
I know I've been absent a bit from Bloggingland, but it's been crazy busy around here with doctor appointments, home school, and the house addition. Sax is still working on home school stuff, but we have cut back a little bit and are focusing more on reading and learning words. He's very independent and self-motivated though!! I went to get his numbers workbook (which I had picked up at the dollar store) and found he had gone ahead and done a few pages all on his own! I am so very proud of the work he has been doing and the effort he puts into it!! He worries about missing out on fun or playtime, but I make sure he gets plenty of that. Often he will work on his workbooks while his sister is doing her homework, so they are doing it together and he feels more like a big boy.
Since the weather was so nice today, we decided to walk to the park after lunch and play until Raine got done with school and we had to pick her up. He loves going down the slide, and played on the swings for a while. He also tried the monkey bars, which is pretty appropriate since he is quite the monkey!!!
When we got home from school, the two of them went out to play in the back yard since it's finally dried up a little bit. Hopefully the clay won't stick to them too bad and the fresh air will wear them out. If the weather is nice still tomorrow, I am thinking about taking the kids to the state park for a picnic since it sounds like daddy may have to work.
We are nearing completion on the house addition - the bathroom had a few more things it needs, the living room just needs trim and flooring, the mudroom and closet need paint, trim, and flooring (but they were intentionally left for last since everything had been piled in those 2 areas), and we still need to get the siding on the house.
On Monday Sax had to go in for a CT. He had just finished his 4th round of antibiotics since January, and his nose was still running green and congested. A trip to Urgent Care a couple weeks ago had found him to have a sinus infection, so I had alerted Vicki because I was concerned after so many rounds of antibiotics and the recurring stuffiness. Dr P's flag went up too when he heard about it, which is why he ordered the CT.
Vicki called Monday afternoon to tell us that she saw a small polyp and some 'gunk' in his left sinus, and that it looked 'pretty bad.' Dr P was out of the office for a few days, but I got a response from him today. Vicki said he had looked at the scan and sent a note to Dr Cofer's office to see if Sax can get in for a check up sooner than what he's scheduled. Apparently the "gunk" Vicki thought she saw is actually flesh and is most likely more polyps. He put Saxon back on another antibiotic - this time 3x per day - that he will stay on until we get in to see ENT. Dr P is pretty sure Sax is going to need yet another sinus surgery, and soon. So now it's a bit of a waiting game. If I don't hear from ENT by Friday, I'm supposed to give them a call. So hopefully we hear from them soon!!!!
I know I've been absent a bit from Bloggingland, but it's been crazy busy around here with doctor appointments, home school, and the house addition. Sax is still working on home school stuff, but we have cut back a little bit and are focusing more on reading and learning words. He's very independent and self-motivated though!! I went to get his numbers workbook (which I had picked up at the dollar store) and found he had gone ahead and done a few pages all on his own! I am so very proud of the work he has been doing and the effort he puts into it!! He worries about missing out on fun or playtime, but I make sure he gets plenty of that. Often he will work on his workbooks while his sister is doing her homework, so they are doing it together and he feels more like a big boy.
Since the weather was so nice today, we decided to walk to the park after lunch and play until Raine got done with school and we had to pick her up. He loves going down the slide, and played on the swings for a while. He also tried the monkey bars, which is pretty appropriate since he is quite the monkey!!!
When we got home from school, the two of them went out to play in the back yard since it's finally dried up a little bit. Hopefully the clay won't stick to them too bad and the fresh air will wear them out. If the weather is nice still tomorrow, I am thinking about taking the kids to the state park for a picnic since it sounds like daddy may have to work.
We are nearing completion on the house addition - the bathroom had a few more things it needs, the living room just needs trim and flooring, the mudroom and closet need paint, trim, and flooring (but they were intentionally left for last since everything had been piled in those 2 areas), and we still need to get the siding on the house.
On Monday Sax had to go in for a CT. He had just finished his 4th round of antibiotics since January, and his nose was still running green and congested. A trip to Urgent Care a couple weeks ago had found him to have a sinus infection, so I had alerted Vicki because I was concerned after so many rounds of antibiotics and the recurring stuffiness. Dr P's flag went up too when he heard about it, which is why he ordered the CT.
Vicki called Monday afternoon to tell us that she saw a small polyp and some 'gunk' in his left sinus, and that it looked 'pretty bad.' Dr P was out of the office for a few days, but I got a response from him today. Vicki said he had looked at the scan and sent a note to Dr Cofer's office to see if Sax can get in for a check up sooner than what he's scheduled. Apparently the "gunk" Vicki thought she saw is actually flesh and is most likely more polyps. He put Saxon back on another antibiotic - this time 3x per day - that he will stay on until we get in to see ENT. Dr P is pretty sure Sax is going to need yet another sinus surgery, and soon. So now it's a bit of a waiting game. If I don't hear from ENT by Friday, I'm supposed to give them a call. So hopefully we hear from them soon!!!!
Tuesday, March 5, 2013
Checkups and Norovirus
Sax had clinic on 2/18. His chest xrays came back clear, his vitamin levels were good, and his weight was steady. It was a full and busy day, with clinic appointments from 7 am until 4:15 pm. We did our best to stay busy in between. We got a beautiful view of the sun coming up. Saxon got to stay in his jammies for about half the morning just because we had to be at the clinic so early. Some pictures from our day:
The only negative from his appointment was his culture results. He cultured h. influenzae again, which is normal, but the amount that he cultured was high. Dr P prescribed a 2 week treatment with Bactrim for him, which we started the following Saturday, Feb. 23.
On Feb 26 Sax started having some tummy issues and was throwing up in the morning. We had thought maybe it was from the Bactrim, except he'd been on it long enough that it didn't make sense. He laid about most of the day and really didn't eat much or drink much. Around 4:30 pm, we had some popcorn, which I thought would be good (like crackers) for his tummy. That didn't stay down either. This pattern continued all the way through Saturday, so he really didn't eat much of anything and wasn't drinking much. I was worried about dehydration, so I called the clinic. They had the same concerns I did and suggested getting him on Pedialyte to try to prevent dehydration. It took him until today to finally finish off one bottle of it. He has had a couple PediaSures since Saturday too, but he still isn't going to the bathroom much. They are pretty sure his vomiting was caused by norovirus.
Last night when Sax started getting tired and whiny, I suggested he lay in my bed for a little bit. He had been really clingy and had a few meltdowns. He just didn't seem to be feeling very well and just wanted his mommy. He had been coughing a little in evening too, which got worse as he was laying down, and he was breathing kind of heavy. After an hour or so of tossing and turning, he decided he wanted to lay in his bed and wanted me to lay with him. Less than an hour later, and more tossing, turning, and coughing, we decided to come down to the living room. Sax said his throat, tummy, and back all hurt. In the end, he slept on me in the recliner. He was still up about every hour, so I decided we needed to call in to the clinic again.
When I heard back from Vicki, she thought this had been going on long enough, so we went in to see our local CF doc, Dr U. Apparently mono and strep are going around in addition to the flu. All of his labs came back normal, but there is a chance that the 24 hour strep culture comes back positive. For now, we're going to go back on the Bactrim and really push the Pedialyte. Unfortunately his weight dropped from 16.4 kg at his checkup on 2/18 down to 15.4 kg today. He's so skinny as it is, we need to really push to get his weight back up. He doesn't have any extra fat or weight he can afford to lose.
I was really happy that Sax's appetite seemed to perk up a bit at supper tonight. He ate a whole DQ hamburger (minus the bun), a big scoop of mandarin oranges, and half of a mini M&M Blizzard for supper, and about an hour later he asked for a piece of jelly toast and ate a little over 1/2 of that. We're going to be hitting the PediaSure and DuoCal hard this next week, and adding in some ScandiShakes. I have to call or email the clinic tomorrow to let them know how he's doing, and I'm going to see about getting him back on weekly weigh-ins at our local clinic. That way we can keep better track of his weight and catch any drops right when they happen. Hopefully he'll be feeling better soon!! (and hopefully I'll have time/remember to update again soon!)
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| Sunrise over Rochester |
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| Tired little boy |
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| playing his leapster (Thanks Nana and Papa!) |
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| Later in the day, my boys snacking, waiting for the next appointment |
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| Daddy loves his Coke! |
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| Got bored, so played with the wrap from his blood draw |
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| Got a little snow while we were waiting |
The only negative from his appointment was his culture results. He cultured h. influenzae again, which is normal, but the amount that he cultured was high. Dr P prescribed a 2 week treatment with Bactrim for him, which we started the following Saturday, Feb. 23.
On Feb 26 Sax started having some tummy issues and was throwing up in the morning. We had thought maybe it was from the Bactrim, except he'd been on it long enough that it didn't make sense. He laid about most of the day and really didn't eat much or drink much. Around 4:30 pm, we had some popcorn, which I thought would be good (like crackers) for his tummy. That didn't stay down either. This pattern continued all the way through Saturday, so he really didn't eat much of anything and wasn't drinking much. I was worried about dehydration, so I called the clinic. They had the same concerns I did and suggested getting him on Pedialyte to try to prevent dehydration. It took him until today to finally finish off one bottle of it. He has had a couple PediaSures since Saturday too, but he still isn't going to the bathroom much. They are pretty sure his vomiting was caused by norovirus.
Last night when Sax started getting tired and whiny, I suggested he lay in my bed for a little bit. He had been really clingy and had a few meltdowns. He just didn't seem to be feeling very well and just wanted his mommy. He had been coughing a little in evening too, which got worse as he was laying down, and he was breathing kind of heavy. After an hour or so of tossing and turning, he decided he wanted to lay in his bed and wanted me to lay with him. Less than an hour later, and more tossing, turning, and coughing, we decided to come down to the living room. Sax said his throat, tummy, and back all hurt. In the end, he slept on me in the recliner. He was still up about every hour, so I decided we needed to call in to the clinic again.
When I heard back from Vicki, she thought this had been going on long enough, so we went in to see our local CF doc, Dr U. Apparently mono and strep are going around in addition to the flu. All of his labs came back normal, but there is a chance that the 24 hour strep culture comes back positive. For now, we're going to go back on the Bactrim and really push the Pedialyte. Unfortunately his weight dropped from 16.4 kg at his checkup on 2/18 down to 15.4 kg today. He's so skinny as it is, we need to really push to get his weight back up. He doesn't have any extra fat or weight he can afford to lose.
I was really happy that Sax's appetite seemed to perk up a bit at supper tonight. He ate a whole DQ hamburger (minus the bun), a big scoop of mandarin oranges, and half of a mini M&M Blizzard for supper, and about an hour later he asked for a piece of jelly toast and ate a little over 1/2 of that. We're going to be hitting the PediaSure and DuoCal hard this next week, and adding in some ScandiShakes. I have to call or email the clinic tomorrow to let them know how he's doing, and I'm going to see about getting him back on weekly weigh-ins at our local clinic. That way we can keep better track of his weight and catch any drops right when they happen. Hopefully he'll be feeling better soon!! (and hopefully I'll have time/remember to update again soon!)
Monday, November 26, 2012
Best. CF. Clinic. Visit. EVER!!!
Even Vicki and Dr P said it was... but I'll get to that in a second.
We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up. Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake. Nice view, good food, and decent prices :) We'll be going there again! We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.
Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom. While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!! Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap. Ugh - makes me shudder!!!
Sax had to be at the clinic at 1 for his GI appt. It was just an annual check and everything looked really well, save for some mild bloating. Dr E ordered a celiac test and vitamin check for his next checkup in Feb.
After GI, we had appointments with Vicki, Dr P, then the dietitian. I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much. I figured it would be another pep talk about getting him to do the impossible and gain some weight.
Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!) She checked Sax out and send Dr P in for his part of the checkup. Dr P seemed a little more excited than normal too... we wondered what was up.
We were told that, since Saxon started coming to CF clinic, he had his very best checkup. Ever. They said they have not seen him this healthy in the past 4 years. His pulse ox was 100% and all the gunk in his lungs has cleared out.
The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%. With the rate of decline, the discussion of a feeding tube was being approached again.
Well, Sax decided that's not what he wanted - because he finally gained weight. And quite a bit for the time period!
He went from 14.9 kg to 16.3 kg in the last 3 months.
His BMI went from 18% to 64% in the last 3 months.
For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)
So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure. The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into. I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....
We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up. Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake. Nice view, good food, and decent prices :) We'll be going there again! We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.
Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom. While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!! Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap. Ugh - makes me shudder!!!
Sax had to be at the clinic at 1 for his GI appt. It was just an annual check and everything looked really well, save for some mild bloating. Dr E ordered a celiac test and vitamin check for his next checkup in Feb.
After GI, we had appointments with Vicki, Dr P, then the dietitian. I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much. I figured it would be another pep talk about getting him to do the impossible and gain some weight.
Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!) She checked Sax out and send Dr P in for his part of the checkup. Dr P seemed a little more excited than normal too... we wondered what was up.
We were told that, since Saxon started coming to CF clinic, he had his very best checkup. Ever. They said they have not seen him this healthy in the past 4 years. His pulse ox was 100% and all the gunk in his lungs has cleared out.
The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%. With the rate of decline, the discussion of a feeding tube was being approached again.
Well, Sax decided that's not what he wanted - because he finally gained weight. And quite a bit for the time period!
He went from 14.9 kg to 16.3 kg in the last 3 months.
His BMI went from 18% to 64% in the last 3 months.
For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)
So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure. The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into. I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....
Friday, May 4, 2012
Waiting and waiting and waiting....
Dr P and Vicki decided at 11:30 we needed to change his dosage from 6 syringes given every 1/2 hour-hour we are going to give him 1 syringe every 10 minutes through his tube. I went to get Vicki after Sax got his noon dose because when he looked at me as I was adding it, he looked like he was going to throw up on me :( And he said his tummy hurts now.
We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips. He's still eating good, and he did pee. We're pumping him full of OJ and water too to keep him from getting dehydrated.
Vicki just came in after we had her paged. Sax was complaining that his tummy was hurting. We're going to give him a break for about a half an hour while the Golytely does it's job.
TMI Moment:
According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier. Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green. Ewww!!!
As I was typing this entry, Sax started yelling "I got big news!! I got big news!!" Daddy asked what his big news is... "I'm going poopy in my diaper!"
I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway. Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor. I yelled "Vicki, where's that bathroom?!?!?" She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.
He didn't go once we got in there :( But his tummy is starting to gurgle and make noise!! That's a good sign that the medication is starting to work!!!
We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips. He's still eating good, and he did pee. We're pumping him full of OJ and water too to keep him from getting dehydrated.
Vicki just came in after we had her paged. Sax was complaining that his tummy was hurting. We're going to give him a break for about a half an hour while the Golytely does it's job.
TMI Moment:
According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier. Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green. Ewww!!!
As I was typing this entry, Sax started yelling "I got big news!! I got big news!!" Daddy asked what his big news is... "I'm going poopy in my diaper!"
I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway. Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor. I yelled "Vicki, where's that bathroom?!?!?" She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.
He didn't go once we got in there :( But his tummy is starting to gurgle and make noise!! That's a good sign that the medication is starting to work!!!
Wednesday, May 2, 2012
What a Bunch of CRAP! (a continuation of crappy conversations)
For those who may be weak of stomach, this is another one all about the poop - such is the life of a CF mom!!!
Sax had a bit of a poop last night, but nothing compared to his normal. When they told me he was packed in, I told Vicki I just had to see it! Yeah, morbid, but I'm getting pretty good at reading scans, so I wanted to give it a go. I'm sure even if you can't or haven't read scans before, you can probably tell what this is....
All those wonderful bubbles on there are gas :( Which is not coming out! He's still not drinking the Golytely with the koolaid, so now we are mixing into his PediaSure, even though that's not generally recommended. But right now, we're in a state of "whatever it takes." Vicki suggested I give him some more Miralax too, but I'm a step ahead of her on that one!!
After talking to Vicki, and her relaying the information to Dr P, we have a new game plan.
1) PediaSure mixed with Golytely - adding as much as he'll stand.
2) Pediatric Fleet Enema - administering round 1 tonight
3) Pediatric Fleet Enema - administering round 2 tomorrow morning
4) If progress is not being made at that point, contact Vicki's office for a 9am appt Friday
5) Friday morning - insertion of an ng tube and administration of Golytely through that. (note to self - bring jug of Golytely with if we go over so we don't have to buy more)
The hope is that once his colon is cleaned out via enema, hopefully he'll be able to go. If he hasn't gone a significant amount by tomorrow at 3pm, Vicki will insert the ng tube, then we will have to spend most of the day walking around at Mayo. That way, if he pulls the tube out, she can reinsert it. He won't be able to actually come home until he starts going more, and if he doesn't go after THAT, then he'll be admitted and more drastic action will need to be taken.
So I guess we're praying for a crappy night tonight!!!
Sax had a bit of a poop last night, but nothing compared to his normal. When they told me he was packed in, I told Vicki I just had to see it! Yeah, morbid, but I'm getting pretty good at reading scans, so I wanted to give it a go. I'm sure even if you can't or haven't read scans before, you can probably tell what this is....
All those wonderful bubbles on there are gas :( Which is not coming out! He's still not drinking the Golytely with the koolaid, so now we are mixing into his PediaSure, even though that's not generally recommended. But right now, we're in a state of "whatever it takes." Vicki suggested I give him some more Miralax too, but I'm a step ahead of her on that one!!
After talking to Vicki, and her relaying the information to Dr P, we have a new game plan.
1) PediaSure mixed with Golytely - adding as much as he'll stand.
2) Pediatric Fleet Enema - administering round 1 tonight
3) Pediatric Fleet Enema - administering round 2 tomorrow morning
4) If progress is not being made at that point, contact Vicki's office for a 9am appt Friday
5) Friday morning - insertion of an ng tube and administration of Golytely through that. (note to self - bring jug of Golytely with if we go over so we don't have to buy more)
The hope is that once his colon is cleaned out via enema, hopefully he'll be able to go. If he hasn't gone a significant amount by tomorrow at 3pm, Vicki will insert the ng tube, then we will have to spend most of the day walking around at Mayo. That way, if he pulls the tube out, she can reinsert it. He won't be able to actually come home until he starts going more, and if he doesn't go after THAT, then he'll be admitted and more drastic action will need to be taken.
So I guess we're praying for a crappy night tonight!!!
Tuesday, May 1, 2012
Over Packed (another crappy conversation!)
My CF family understands, but a word of warning to the rest of you who aren't used to it - this literally WILL be a crappy conversation, as much of the CF life is centered around bm's and all the joys that go with them. So if you have a weak stomach, you may not want to proceed!!
Turns out we're not going to Mayo - at least, not yet anyway. After talking to Vicki this morning and not seeing any progress past the two little nuggets yesterday, Dr P decided that Sax needed an abdominal scan so we can see what's going on in there. The order was sent to our local clinic to save us the hour drive unless it was necessary.
Sax was GREAT for his x-rays. I noticed his abdomen seemed a little more distended than it did earlier this morning. We had to wait a few hours to get the results from Rochester. And, being the sadist I am, I asked that they send me a copy of the films. Morbid, huh? But she is sending them via email tomorrow!! Haha!
What did they find?
Poor little man's entire colon is packed full. Then there is a pocket of gas. Then his lower intestines are packed full too. My poor baby :(
I guess the good news is that all the poop is just packed and there is no obstruction. From the looks of the picture, I'm told, it looks like some of it is quite old. Which mean it, like his gas the past few days, will stink to high heaven when it finally comes out.
Of course, I asked right away if we're doing an enema or what the plan would be. Unfortunately because of how unbelievably sticky CF poops can be, Dr P said it would be in effective. So instead, we're trying something called Golytely. Normally it's given to adults before a colonoscopy and apparently has an awful taste. The usual dosage is 1 L over 24 hours, but we're supposed to try to give him 1 L over 12 hours (or however quickly we can get him to drink it). It can dehydrate him, so we have to give him other beverages in between. We were told he most likely won't want to eat much and he will probably have some stomach cramping - but it's better than the alternative! He can be on this up to 3 days, and is supposed to continue it until 'stool is clear' - ie, he's basically pooping water :(
It has a slightly salty smell to it and Sax doesn't really seem to like it much. We were going to wait until tomorrow to start it, but I think it's worth Mommy missing out on a little sleep to make my little man feel better. We were told to add some sugar-free KoolAid to it to help with the taste - Vicki suggested Cherry or Grape covers the taste well.
We are supposed to add it directly to the Golytely one sippy cup at a time. They also said it tastes much better served ice cold, so we even dropped a couple ice cubes in there.
With doing this 'clean out,' I am a little disappointed though. We have Sax pretty much potty trained until he started having trouble pooping. We had to buy some more pull ups (Walgreens brand, which we love!), baby butt cream just in case, and wipes. We were warned that the first couple will be pretty normal poops for him, but they are going to get looser and looser until he basically will have no control. This will really help with the clean up part at least!!
The little bit of the Golytely he's already drank tonight has helped - he had his first poopy! It wasn't very big, but still, it's progress!!!! Yay!!!!
Turns out we're not going to Mayo - at least, not yet anyway. After talking to Vicki this morning and not seeing any progress past the two little nuggets yesterday, Dr P decided that Sax needed an abdominal scan so we can see what's going on in there. The order was sent to our local clinic to save us the hour drive unless it was necessary.
Sax was GREAT for his x-rays. I noticed his abdomen seemed a little more distended than it did earlier this morning. We had to wait a few hours to get the results from Rochester. And, being the sadist I am, I asked that they send me a copy of the films. Morbid, huh? But she is sending them via email tomorrow!! Haha!
What did they find?
Poor little man's entire colon is packed full. Then there is a pocket of gas. Then his lower intestines are packed full too. My poor baby :(
I guess the good news is that all the poop is just packed and there is no obstruction. From the looks of the picture, I'm told, it looks like some of it is quite old. Which mean it, like his gas the past few days, will stink to high heaven when it finally comes out.
Of course, I asked right away if we're doing an enema or what the plan would be. Unfortunately because of how unbelievably sticky CF poops can be, Dr P said it would be in effective. So instead, we're trying something called Golytely. Normally it's given to adults before a colonoscopy and apparently has an awful taste. The usual dosage is 1 L over 24 hours, but we're supposed to try to give him 1 L over 12 hours (or however quickly we can get him to drink it). It can dehydrate him, so we have to give him other beverages in between. We were told he most likely won't want to eat much and he will probably have some stomach cramping - but it's better than the alternative! He can be on this up to 3 days, and is supposed to continue it until 'stool is clear' - ie, he's basically pooping water :(
It has a slightly salty smell to it and Sax doesn't really seem to like it much. We were going to wait until tomorrow to start it, but I think it's worth Mommy missing out on a little sleep to make my little man feel better. We were told to add some sugar-free KoolAid to it to help with the taste - Vicki suggested Cherry or Grape covers the taste well.
We are supposed to add it directly to the Golytely one sippy cup at a time. They also said it tastes much better served ice cold, so we even dropped a couple ice cubes in there.
With doing this 'clean out,' I am a little disappointed though. We have Sax pretty much potty trained until he started having trouble pooping. We had to buy some more pull ups (Walgreens brand, which we love!), baby butt cream just in case, and wipes. We were warned that the first couple will be pretty normal poops for him, but they are going to get looser and looser until he basically will have no control. This will really help with the clean up part at least!!
The little bit of the Golytely he's already drank tonight has helped - he had his first poopy! It wasn't very big, but still, it's progress!!!! Yay!!!!
Wednesday, January 25, 2012
The Results Are In....
Vicki called us with Sax's polyp and lavage culture results. We were hoping he wouldn't culture much, if anything, but we weren't that lucky.
They found a tiny bit of strep, which they aren't worried about, but he cultured staph again along with haemophilus influenzae. It seems like he cultures this more often than not when he has this throat cultures. Dr P decided to do a course of 2 weeks on amoxicillan 3x per day, and gave us a refill also. Sax is scheduled for a followup with Dr Cofer on Feb 3. We are supposed to ask her if we will need to go a 3rd week on the amoxicillan. Sax's eye has been gooping up a bit, but Vicki figured the same as I did - it's from his sinuses being clogged as they're healing, and the antibiotics should clear it up.
Sax seems to be feeling more like his old self. He was a little feverish the other day, but now seems to be better. We've discovered just how much he needs his naps though. It's hard to handle his tantrums on days he hasn't napped. :(
They found a tiny bit of strep, which they aren't worried about, but he cultured staph again along with haemophilus influenzae. It seems like he cultures this more often than not when he has this throat cultures. Dr P decided to do a course of 2 weeks on amoxicillan 3x per day, and gave us a refill also. Sax is scheduled for a followup with Dr Cofer on Feb 3. We are supposed to ask her if we will need to go a 3rd week on the amoxicillan. Sax's eye has been gooping up a bit, but Vicki figured the same as I did - it's from his sinuses being clogged as they're healing, and the antibiotics should clear it up.
Sax seems to be feeling more like his old self. He was a little feverish the other day, but now seems to be better. We've discovered just how much he needs his naps though. It's hard to handle his tantrums on days he hasn't napped. :(
Saturday, January 14, 2012
Always Playing Catch Up...
So it's been a while since I have updated this. Sometimes life gets in the way. Sometimes there's just nothing to say. Sometimes it's just too hard to say what you really want to say. I don't know.
It's been a rough few months. Sax became a big brother on November 12, 2011, then we lost our Little Warrior on November 20, 2011. It was a very difficult time for all of us, even though Sax doesn't completely understand all that happened. You can read about Baden and his life and struggles at www.caringbridge.org/visit/BadenScot. Sax tells us often that his brother is an angel and has wings in heaven. He also tells me often that he misses him.
Saxon really hasn't had too much happen (other than a couple minor colds) to write about until now. Christmas was nice and quiet, thankfully, and we got to spend it with our family. Here's a nice group pic :)
We spent 2 days this past week at Mayo. On Tuesday he had a full day of appointments, plus Mama had a morning checkup (which went great!) Sax's first appointment was at 7am for a fasting blood test. Raine stayed at Aunt Abbey's so that she wouldn't have to get up so early to be dropped off. I was up at 330 and couldn't get back to sleep. We had to leave about 5am anyway. Daddy and I couldn't have anything to eat either because it wasn't fair to Sax.
I have a problem with needles, so Scot went in with him for his blood draw. He is such a trooper!! When they stuck him with the needle, he said "Ouch." After a minute or so, Sax said, "I wanna be done." Then when they took the needle out, he said "ouch" again, then asked if he could have some stickers now. That was it. No tears, no fighting or fussing. (Must get that from Daddy - hahaha).
Daddy took him to the next appointment - for his chest x-rays - without me since I was at my appointment. Sax didn't want to put the hospital shirt on, but sat just fine all by himself and posed for his x-rays. He's NEVER been as cooperative as he was Tuesday!! Such a BIG BOY!!! (Although it is sad that he is so used to the procedures that he knows what to expect....) I also didn't make it back from his audiogram, but apparently that was better than it had been in December. (He had an ENT-only appointment in November, where he practically failed his hearing test and we found there was fluid behind his ear drums again.) Sax knew what he had to do and was having fun flinging frogs, trains, bugs, and other miscellaneous items around the room when he heard the beep (yes, he was supposed to be flinging them.)
I met up with "the boys" right before the appointment with Dr Cofer, his ENT. Her assistant checked him out, then she checked him out. There is still fluid behind his ear drums. His sinuses under his eyes are swollen and it looks like he has bags under them. There are also a few polyps in his nose again in spite of using Nasonex. She is going to put another set of tubes in his ears and remove the polyps. She ordered a head CT to check out his sinuses and see if there are any deeper polyps and to see if his sinuses are opening up. We warned her that Sax does NOT like the CT machine, so she also ordered sedation for him. The CT was scheduled for Wednesday and surgery scheduled for Wednesday, January 18th.
The last 2 appointments for the day were with the CF team - Vicki and Dr P. Vicki did the usual checkup except for the throat culture. When Sax has his surgery next week, Vicki and Dr P have requested a bronchial lavage, so they will do the culture then. We watched Cars 2 while waiting for Dr P. Sax fell asleep and stayed asleep through the entire appointment. He listened to Sax's lungs and looked over the x-rays. His upper lungs have cleared up quite a bit. The deposit that Dr Henry has pointed out didn't seem to be showing up any more either.
We really think switching the Pulmozyme back to morning may be helping :) I've also been using the Wii Fit to bribe Sax to do his morning treatments - after thumpies and nebbies, he 'gets to' run after a puppy. He has fun and exercises his lungs a little more!
We were also very happy to find out that his weight has increased - he's up to 15 kg!! That's the highest he's ever been!!!
Wednesday we went in for Sax's CT - and that was a mess. We were told he needed to fast because of the sedation. His appointment was at 8 am. About 9 am the technician finally came to get us. They weren't planning on sedating him and just wanted to strap him to the table. We knew it wouldn't work, but just to show them, I tried laying Sax on the table. He freaked out! It was like trying to hold down a wild animal!! I told the tech - again - that he was supposed to get sedation!
I don't understand why they weren't ready - it was noted on the appointment sheet we got.
We were sent back to the waiting room. A few minutes later a nurse came in to tell us they were waiting for the anesthesia team. Because of Sax's CF, he can't have the regular sedation. The CT team apparently didn't know this, even though it was in Sax's orders - grrrr!!!! We were moved to a private waiting room until 1015 when they were FINALLY ready. By this time, Sax was extremely upset because he was hungry and thirsty. I don't blame him! He hadn't had anything to eat since 7pm!
I feel bad about lying to Sax to get him to take the anesthesia, but it had to be done. We were back in the room with the CT machine, and he was getting scared again. I told Sax that we were going to do a nebby treatment so he wouldn't be afraid to put on the mask. This did the trick - within a couple minutes he was sound asleep. He needed an IV as a precaution with the anesthesia. Then it was another hour at the hospital while he was coming out of it. He wasn't completely up to par until later in the afternoon. Sax was suffering from motion sickness on the patient shuttle when we went to pre-register for his surgery, and then in the van. Since his stomach was empty he was just vomiting up mucus and stomach acid. I felt so awful for him. Around 3 we finally got him to drink a little water and eat a few crackers. Later in the afternoon/early evening, his appetite picked up and he ate some more food.
I'm sure I won't have a chance to write again until after his surgery, so it will be Wednesday night or Thursday, depending. The surgery is planned to be outpatient, but it depends on how deep into his sinuses Dr Cofer has to go. We were told to pack a bag just in case....
It's been a rough few months. Sax became a big brother on November 12, 2011, then we lost our Little Warrior on November 20, 2011. It was a very difficult time for all of us, even though Sax doesn't completely understand all that happened. You can read about Baden and his life and struggles at www.caringbridge.org/visit/BadenScot. Sax tells us often that his brother is an angel and has wings in heaven. He also tells me often that he misses him.
Saxon really hasn't had too much happen (other than a couple minor colds) to write about until now. Christmas was nice and quiet, thankfully, and we got to spend it with our family. Here's a nice group pic :)
We spent 2 days this past week at Mayo. On Tuesday he had a full day of appointments, plus Mama had a morning checkup (which went great!) Sax's first appointment was at 7am for a fasting blood test. Raine stayed at Aunt Abbey's so that she wouldn't have to get up so early to be dropped off. I was up at 330 and couldn't get back to sleep. We had to leave about 5am anyway. Daddy and I couldn't have anything to eat either because it wasn't fair to Sax.
I have a problem with needles, so Scot went in with him for his blood draw. He is such a trooper!! When they stuck him with the needle, he said "Ouch." After a minute or so, Sax said, "I wanna be done." Then when they took the needle out, he said "ouch" again, then asked if he could have some stickers now. That was it. No tears, no fighting or fussing. (Must get that from Daddy - hahaha).
Daddy took him to the next appointment - for his chest x-rays - without me since I was at my appointment. Sax didn't want to put the hospital shirt on, but sat just fine all by himself and posed for his x-rays. He's NEVER been as cooperative as he was Tuesday!! Such a BIG BOY!!! (Although it is sad that he is so used to the procedures that he knows what to expect....) I also didn't make it back from his audiogram, but apparently that was better than it had been in December. (He had an ENT-only appointment in November, where he practically failed his hearing test and we found there was fluid behind his ear drums again.) Sax knew what he had to do and was having fun flinging frogs, trains, bugs, and other miscellaneous items around the room when he heard the beep (yes, he was supposed to be flinging them.)
I met up with "the boys" right before the appointment with Dr Cofer, his ENT. Her assistant checked him out, then she checked him out. There is still fluid behind his ear drums. His sinuses under his eyes are swollen and it looks like he has bags under them. There are also a few polyps in his nose again in spite of using Nasonex. She is going to put another set of tubes in his ears and remove the polyps. She ordered a head CT to check out his sinuses and see if there are any deeper polyps and to see if his sinuses are opening up. We warned her that Sax does NOT like the CT machine, so she also ordered sedation for him. The CT was scheduled for Wednesday and surgery scheduled for Wednesday, January 18th.
The last 2 appointments for the day were with the CF team - Vicki and Dr P. Vicki did the usual checkup except for the throat culture. When Sax has his surgery next week, Vicki and Dr P have requested a bronchial lavage, so they will do the culture then. We watched Cars 2 while waiting for Dr P. Sax fell asleep and stayed asleep through the entire appointment. He listened to Sax's lungs and looked over the x-rays. His upper lungs have cleared up quite a bit. The deposit that Dr Henry has pointed out didn't seem to be showing up any more either.
We really think switching the Pulmozyme back to morning may be helping :) I've also been using the Wii Fit to bribe Sax to do his morning treatments - after thumpies and nebbies, he 'gets to' run after a puppy. He has fun and exercises his lungs a little more!
We were also very happy to find out that his weight has increased - he's up to 15 kg!! That's the highest he's ever been!!!
Wednesday we went in for Sax's CT - and that was a mess. We were told he needed to fast because of the sedation. His appointment was at 8 am. About 9 am the technician finally came to get us. They weren't planning on sedating him and just wanted to strap him to the table. We knew it wouldn't work, but just to show them, I tried laying Sax on the table. He freaked out! It was like trying to hold down a wild animal!! I told the tech - again - that he was supposed to get sedation!
I don't understand why they weren't ready - it was noted on the appointment sheet we got.
We were sent back to the waiting room. A few minutes later a nurse came in to tell us they were waiting for the anesthesia team. Because of Sax's CF, he can't have the regular sedation. The CT team apparently didn't know this, even though it was in Sax's orders - grrrr!!!! We were moved to a private waiting room until 1015 when they were FINALLY ready. By this time, Sax was extremely upset because he was hungry and thirsty. I don't blame him! He hadn't had anything to eat since 7pm!
I feel bad about lying to Sax to get him to take the anesthesia, but it had to be done. We were back in the room with the CT machine, and he was getting scared again. I told Sax that we were going to do a nebby treatment so he wouldn't be afraid to put on the mask. This did the trick - within a couple minutes he was sound asleep. He needed an IV as a precaution with the anesthesia. Then it was another hour at the hospital while he was coming out of it. He wasn't completely up to par until later in the afternoon. Sax was suffering from motion sickness on the patient shuttle when we went to pre-register for his surgery, and then in the van. Since his stomach was empty he was just vomiting up mucus and stomach acid. I felt so awful for him. Around 3 we finally got him to drink a little water and eat a few crackers. Later in the afternoon/early evening, his appetite picked up and he ate some more food.
I'm sure I won't have a chance to write again until after his surgery, so it will be Wednesday night or Thursday, depending. The surgery is planned to be outpatient, but it depends on how deep into his sinuses Dr Cofer has to go. We were told to pack a bag just in case....
Monday, February 28, 2011
Just a Typical Mayo Day... Or Daddy Got Inked
Wednesday was our day for Spring Checkup! Hi ho, hi ho, it's off to Mayo we go... or went. It was a busy day. It's a really good thing that the way the pre-appointment time was NOT an indication of how the day would go!!
We got off to a late start right away. I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready. Since we had to be there by 9am, our plan was to leave about 7:30am. We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food. BIG MISTAKE!!!
We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito. We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car. Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44. By now, it was 7:59. I sent Daddy in while I pulled the car around to the other side.
Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait. Can I get a refund for the food since we're not going to get it?
She turns around and, sure enough, our order was still sitting by the window. I don't think they would have ever brought it out!!! So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru). We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)
We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit. Then when we got almost to 63, the car started acting up. Daddy thinks it's the torque converter clutch solenoid (tcc). When I try to speed up, the accelerator pushes back and the car doesn't want to speed up. If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again. Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok. That is, until we got off 52 and were heading to the clinic :-( Daddy's going to see what he can do about that.
We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic. It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures. Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo. Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!! We ended up being about 10 minutes late for our first appointment, which was with the social worker. But that ended up being alright because she wasn't on 16 and ready to go either. It all ended up working out.
Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had. We have been having a lot of trouble with our local Human Services office when it comes to insurance. Our income has not changed even though I started a second job. Between the 2 jobs I still make less than I had originally claimed on the initial application. And Scot's income hasn't changed. However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines. I don't understand this. Plus she won't tell us WHAT the income guidelines are!! So we asked the Rochester worker for some help. She was able to give us contact information for an advocacy program for our county. (I haven't had a chance to call them yet - but that's a whole different issue. It's on my list of 'things to do' this week.) I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.
Our next appointment was with Vicki and Dr P. They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff. We reviewed his treatments. I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off. Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step. She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time. He doesn't seem to notice the extra 5 minutes anyway. When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy! Dr P listened to his heart and lungs, and Sax took his big, deep breaths. We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen. It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist. There may be some digestive issues going on. And when Sax is on his Zantac, it seems that he's a lot more gassy. He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....
Sax has grown almost an inch since his appointment in November. Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age. Like I said before, we knew he'd be short. We have no control over that. There was some concern over his weight though. Since November, he has only gained .10 kg. Ok, so it's a gain, but it's not much.. it's not enough. With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%. We're happy he's still above the 50% mark, but he's getting closer and closer. It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!)
We didn't do a blood test this round, but probably will next time and recheck his iron levels. Of course there was the throat culture too. We haven't gotten the results of that yet, but I expect I should be getting those soon. Sax is such a good boy when Vicki sticks the swabs down his throat. He doesn't fight or bite down on the swabs. He's also very cooperative when it's time to check his ears and nose. Sax was told he's one of their best patients for that!! :-)
Our next appointment (and the last one Daddy was at for the day) was with the dietician. We discussed options for increasing his caloric intake. For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective. He loves his vanilla Pediasure, but that's not quite doing it. Our dietician has requested a case of Pediasure 1.5 be sent to us. One bottle has over 300 calories in it. If he like it, we may be able to get that from WIC. She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup. And butter. In spite of what the WIC nurse says, butter is very very good for him. Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat. He doesn't do that anyway, so we're just to disregard them.
We're also trying something called Duocal. The dietician has requested a sample of that be sent to us too. There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt). The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at http://www.myduocal.com/.)
Now, during all of this is when Daddy snuck away, but for good reason. He is doing his part to help create CF awareness..
Daddy's new CF tat - 65 Roses and Saxon. This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-)
Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment. Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there. Unfortunately there really aren't many kid-friendly places to eat in that area. We usually prefer to eat lunch early and avoid the crowds. We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.
We saw Stephanie and ended up seeing Dr Cofer before we left. Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit. I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one. Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something. She called in Dr Cofer and they decided to do another nasal endoscopy. NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there. Poor little man!! At least it didn't bleed much this time!! The sucked some nasty boogies out so they could see better. It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!! Yippee!! Dr Cofer gave him clearance to come back in 6 months now instead of 3. The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.
So all in all, it ended up being a pretty good day of appointments. We stopped on the way home and got a new pet (for Mommy).
So I'll leave you with some fun pictures from the past week.....
We got off to a late start right away. I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready. Since we had to be there by 9am, our plan was to leave about 7:30am. We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food. BIG MISTAKE!!!
We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito. We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car. Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44. By now, it was 7:59. I sent Daddy in while I pulled the car around to the other side.
Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait. Can I get a refund for the food since we're not going to get it?
She turns around and, sure enough, our order was still sitting by the window. I don't think they would have ever brought it out!!! So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru). We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)
We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit. Then when we got almost to 63, the car started acting up. Daddy thinks it's the torque converter clutch solenoid (tcc). When I try to speed up, the accelerator pushes back and the car doesn't want to speed up. If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again. Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok. That is, until we got off 52 and were heading to the clinic :-( Daddy's going to see what he can do about that.
We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic. It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures. Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo. Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!! We ended up being about 10 minutes late for our first appointment, which was with the social worker. But that ended up being alright because she wasn't on 16 and ready to go either. It all ended up working out.
Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had. We have been having a lot of trouble with our local Human Services office when it comes to insurance. Our income has not changed even though I started a second job. Between the 2 jobs I still make less than I had originally claimed on the initial application. And Scot's income hasn't changed. However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines. I don't understand this. Plus she won't tell us WHAT the income guidelines are!! So we asked the Rochester worker for some help. She was able to give us contact information for an advocacy program for our county. (I haven't had a chance to call them yet - but that's a whole different issue. It's on my list of 'things to do' this week.) I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.
Our next appointment was with Vicki and Dr P. They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff. We reviewed his treatments. I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off. Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step. She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time. He doesn't seem to notice the extra 5 minutes anyway. When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy! Dr P listened to his heart and lungs, and Sax took his big, deep breaths. We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen. It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist. There may be some digestive issues going on. And when Sax is on his Zantac, it seems that he's a lot more gassy. He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....
Sax has grown almost an inch since his appointment in November. Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age. Like I said before, we knew he'd be short. We have no control over that. There was some concern over his weight though. Since November, he has only gained .10 kg. Ok, so it's a gain, but it's not much.. it's not enough. With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%. We're happy he's still above the 50% mark, but he's getting closer and closer. It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!)
We didn't do a blood test this round, but probably will next time and recheck his iron levels. Of course there was the throat culture too. We haven't gotten the results of that yet, but I expect I should be getting those soon. Sax is such a good boy when Vicki sticks the swabs down his throat. He doesn't fight or bite down on the swabs. He's also very cooperative when it's time to check his ears and nose. Sax was told he's one of their best patients for that!! :-)
Our next appointment (and the last one Daddy was at for the day) was with the dietician. We discussed options for increasing his caloric intake. For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective. He loves his vanilla Pediasure, but that's not quite doing it. Our dietician has requested a case of Pediasure 1.5 be sent to us. One bottle has over 300 calories in it. If he like it, we may be able to get that from WIC. She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup. And butter. In spite of what the WIC nurse says, butter is very very good for him. Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat. He doesn't do that anyway, so we're just to disregard them.
We're also trying something called Duocal. The dietician has requested a sample of that be sent to us too. There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt). The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at http://www.myduocal.com/.)
Now, during all of this is when Daddy snuck away, but for good reason. He is doing his part to help create CF awareness..
Daddy's new CF tat - 65 Roses and Saxon. This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-)
Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment. Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there. Unfortunately there really aren't many kid-friendly places to eat in that area. We usually prefer to eat lunch early and avoid the crowds. We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.
We saw Stephanie and ended up seeing Dr Cofer before we left. Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit. I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one. Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something. She called in Dr Cofer and they decided to do another nasal endoscopy. NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there. Poor little man!! At least it didn't bleed much this time!! The sucked some nasty boogies out so they could see better. It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!! Yippee!! Dr Cofer gave him clearance to come back in 6 months now instead of 3. The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.
So all in all, it ended up being a pretty good day of appointments. We stopped on the way home and got a new pet (for Mommy).
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| My hamster Saxon named Mouse |
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