Ben had the flu

So, Ben had the flu this week. You would never have known it except that on Thursday evening/Friday morning he had a pretty high temperature (102.5 at one point) and was tossing and turning throughout the night. So, Friday morning, I took the girls to school for their last day before break, while Joe took Ben to the dr. Klara also had her Primary performance she did not want to miss. They automatically did a test for flu since he had the high temperature, as well as the fact that his sister Klara had had the flu on Dec 7. Ben had his flu shot (of course!) and had a course of tamiflu when Klara had the flu. But, with his immune system being so suppressed, those things don't always work as effectively. His test came up positive for flu a. The same as his sister. Though, his teachers had told us that 3 kids went home sick with fevers that week, so it is also possible that he got sick from the school. Or anywhere outside of school. Or in the hospital during his biopsy. Anything is possible. Especially since Klara had been better for over a week and a half by the time Ben got sick. Anyways, they immediately put Ben on tamiflu again. Due to his transplant he has to go on tamiflu if he has the flu, even though he had been on preventative tamiflu just 2 weeks before.They also upped the amount of his breathing treatment he gets to 2 puffs a day, and added in some of his xoponex. We also decreased the amount of his cellcept to allow his body to fight off the infection. But, only for 7 days so that he does not reject.

Later on that evening, I started getting a headache and cough and feeling very blah. Joe took my temperature and I had a slight fever as well. I went to the urgent care and they gave me tamiflu as well since i have asthma and having the flu can result in pneumonia, asthma exacerbation and hospitalization as well as being on oxygen. They also gave me robitussin with codeine, which helps with the coughing at night. Though that has gotten better too.

Ben has actually looked REALLY good. I attribute this to his flu shot and first course of tamiflu really helping out. He only looked really sick on Friday morning. After a couple of doses of tylenol and the first dose of tamiflu, he looked perfectly fine. He was actually playing with his sisters by that evening. I felt better by Saturday morning, though still really tired and really achey. I feel almost like myself today.

All this is to say, even though the flu shot was not a good match this year because one of the strains mutated, it DOES help minimize and shorten the duration of the flu, even when it is a different strain. If Ben had not gotten the flu shot, or if he had not gotten his first course of tamiflu, I think we would have had a much different course. Perhaps hospitalization, perhaps it would have been weeks of illness. It probably would not have involved my spunky boy who is right now running around playing with his sisters and breaking their houses ;)

Eating (pasteurized) eggnog on Saturday

With Klara, after running around

Playing in his heart hero cape

Ben's biopsy and anniversary

On December 11th, Ben had his annual biopsy. Ben and I stayed overnight at the Ronald McDonald house Wednesday night to Friday morning because we had to be at Lurie at 6:45 for labs before his biopsy, and then we also had his NICU follow up on Friday, which also happened to be the 3 year anniversary of when all of his heart issues started. Wednesday evening consisted of doing everything I could to fill up Ben's belly without making him vomit ;) He was not allowed to eat after midnight and could only have clear liquids up until 6:30 am.

Eating his dinner

Having his first snack-chips and hummus

Last snack-ice cream

Of course, when I woke him at 5:45 to get him dressed, and eat some jello, he went right back to sleep, negating any time for jello. We got to the lab area, and of course, they were not open until 7. And were not at all prepared to do his labs, even though someone had told us to show up at 6:45 the day before. So, we went back up to the pre-op area and they said they would take us back and do his labs right away. Which I was skeptical about, but went along with. Right away, turned out to be 7:45, which is not horrible, but his labs are supposed to be drawn before 7 because of a timed med that he has to get at 7 am. Consequently, when we got his prograf levels back, they were 3.2. They are supposed to be in the range of 6-8. Which was really worrisome. Now, 45 minutes late on the blood draw couldn't account for it being that much off though, so they did raise his prograf to 3.6 and we are doing a redraw next week. We also were placed in isolation due to Ben having had a questionable MRSA when he was pre-transplant. Apparently this never goes away until he does a series of 3 tests. So he also had one of those done at the hospital and will have one done next week and one at the pedi so we can hopefully get the isolation precautions lifted when we go there next time. Around 8:15, Ben started getting really antsy, and started saying how HUNGRY he was ;) So, they gave him his sleepy medicine around 8:30, and he started calming down. And getting a little loopy. When Joe called, he told him, "Daddy, they STICKED me!" about the phlebotomist. :)

A little sleepy here 

He went back around 8:45, and the procedure took a little over an hour. They told us everything went really well. All of his pressures looked good, the arteries looked good. The next day they called and said the biopsy results were 1a, which is not a 0, but still really good and they weren't going to do anything about it. But, obviously still wanted that follow up on the prograf level. Also, the x-ray looked good. No cardiac changes and no pneumonia. Ben fell asleep really early that night. Around 8:30. But, not before putting Winnie the pooh to bed first (they gave him Pooh in order to calm him down that morning when he was getting fussy about having to stay flat on his back after the procedure.) 

Put Winnie the pooh to bed too

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fell right to sleep

12/12/14-This was the 3 year anniversary of the day all of Ben's heart issues started. And we had his NICU developmental clinic today. I love that on this day, the day that was one of the worst days 3 years ago, I had a psychologist and a speech therapist and doctor telling me just how wonderfully he is doing. The speech therapist said his speech is very typical of a 3-year-old's. She didn't see anything to worry about. We should work on his L's, because he substitutes Y for L, where most kids his age would substitute W. But it is not something to be concerned about. And cognitively, he is doing very well too. He is even doing stuff that is more advanced than some of his peers in some areas. Gross motor skills stll need some work, obviously. But, even the PT said, "well, his skills have always been slower. He is just working on Benjamin time. He will get there, it will just be on his own time." She is also going to help us try to get Aetna to pay for his services. Hopefully they will, because he definitely needs it! She did see him climbing all over the tables and standing on chairs, so he does have some skills that are right on target ;) We are very happy with how well he did the last two days. So, we also bought him a little lego set at the lego store. He also got a couple of little toys from The RMH, and from Santa and Lurie. So, he had lots to play with the last few days.

Looking out the window before the Dr came in

Showing off how he can climb on a chair

Private Physical Therapy

So, Ben's birthday was on Wednesday. We celebrated by going to All Aboard Diner and then opening his present at home. He loves seeing all the trains there. So much so, that he didn't really eat anything except ice cream ;)

Watching the food come

Waiting for the ice cream to come

Opening his presents

Ice cream time

The next day, Thursday, was his first private clinic visit for Physical Therapy. I was a little worried because of germs. And people. And people with germs. But, it all worked out. We were the only people in their when we arrived and there were two women sanitizing toys in the room we would be playing in when we got there. We went right back when got in. Now, the thing with this PT is, insurance thinks he is all good. He doesn't need PT anymore. They said they are not going to cover his PT anymore because his condition is chronic and he should have been recovered by Nov 2013. Which, he had barely been walking by then. He was only 2 at that point and only started walking at 17 months and was only proficient at walking by the time he was 2. I explained all of this to his PT and she was shocked! She is going to write a new letter to the insurance explaining all of his falling and balance issues due to his low tone in his lower body and upper body weakness. For now, we are doing private pay. Hopefully with our second appeal the insurance will start paying. Our PT did a lot of work on going up and down the stairs. She would pretend to leave something downstairs and tell Ben "Oh, I forgot this downstairs, lets go get it and bring it back up." By the 4th time, he said "you go get it. I stay up here and cook." She just had to laugh at him. He is persistent ;) They also did a lot of jumping to work on his quadriceps strength. He was exhausted by the end of it all! Here are just a few pics from that day

Doing a little work on the treadmill, or "walking machine"

Sliding down the slide out of the tree house

Walking down the stairs from the tree house

Sitting down, a little tired

The end of EI

 For Ben that is. Not me. I work in EI, and plan to for as long as I can. But, tomorrow is Ben's last EI appointment with his PT. We will switch over next week to private therapy. I have to say, I am a little worried about it. I mean, I love his therapist. I have loved having her come to our home for the past 3 years. She has helped him in so many ways. He has come so far because of her and I can not believe he is aging out of Early Intervention already! He will be 3 next week and EI only goes to age 3. So, we will switch to clinic based therapy next Thursday. Our last session in the home is tomorrow. We have already set it up with the therapist and the front desk that due to his condition, we will check in at the front and she will escort us back to the room Ben will be using. Unfortunately, we can not be the first patient of the day. I believe they open for patients at 8 am, and I drop the girls off for school on Thursdays at 8:30. So, I will be getting to the clinic around 9:30. BUT, his PT said they have some college students there that she is going to use to clean off all the toys an items that she thinks she will need to use for that session, before we get there. So, at least I can be reassured that everything is being done to keep it as germ free as possible.We do want to make sure he is doing as well as possible. And, his PT said that he has come SO far. But, he is still having trouble with things that require quad strength, such as going down the stairs, jumping and pedaling a tricycle (which he did a few times 2 weeks ago. But just those few times.) He also has some low tone in his lower body which needs to be monitored. So we will still continue on with PT. And hopefully he will continue to make great progress.

Climbing up the "rocks"

He pushed the pedals a couple of times! Yay PT!

Happy Halloween!

Ben had a great time Trick or Treating with his sisters! It was also his sister Klara's birthday today! She turned 6. She celebrated in her classroom yesterday because they were having a parade at school today. So, he also got to join in on that yesterday. Some people are a little skiddish about letting a child who had a heart transplant go door to door trick or treating. They think they might get sicker by being exposed to all the various people. I did think about that. But ultimately, we wanted to let him live. We wanted Ben to be treated the same as any child, and especially the same as his sisters. So, he dressed up as the monkey that he is around this house, and grabbed his bucket and went off in the freezing winds to get some candy :) Yes, it was about 40 degrees out with 40 mph winds and all three of my kids wanted to go trick or treating. Especially Klara! But, Klara was the first to say, "I want to go home now." So, Klara and I went home first and Ben and Abby stayed out a bit longer with Joe. Then, after they got back, we sang Happy birthday to Klara and ate her favorite dinner of chicken nuggets. The next day we had breakfast out (her choice) and visited my grandma. A very nice weekend!

Celebrating in Klara's classroom

Trick or Treat time!

And he's off!

Ready to say "Trick or treat!"

At home watching Thomas Halloween while the girls played Monopoly

The importance of vaccinations. In other words, go get your flu shot!

So, in case you are new around these parts, I am very in favor of vaccination, for everyone that can be vaccinated. Every child that can be vaccinated, should be vaccinated, on time, every time. So, it should come as no surprise that when a question came up last night on a transplant board that I am on about "what do you do about family members that do not want to be vaccinated for the flu?" My answer would be, "we do not go around people who are unvaccinated. All of our close friends and family members are fully vaccinated." What was surprising was the debate that ensued about whether or not the flu shot is worth it, or the fact that the flu shot has toxins in it and "chemicals." I mean, I of course have heard this before, many times. But, on anti-vax sites. Not on a transplant board. These are parents who have been given a great gift for their child! A very selfless gift from someone who has lost a very dear person! Every transplant center I know of has written in to their post-transplant rules that the child should have a flu shot to protect them from the flu. Their immediate family should also get a flu shot to protect them with what is known as herd immunity.  For kids who have had heart transplants (or any kind of transplant) they are put on heavy immunosuppressants so that their body does not reject their new organ. But, what this means, is they also can not fight off diseases as easily as you or I can. With healthy people, or immune system can kick in and try to fight off the flu. But, even in  otherwise healthy people, the flu can kill. You can imagine what this can mean for a child like Ben who is on immunosupressing medication.

In the 2012-2013 flu season, there were 149 laboratory-confirmed influenza pediatric deaths . Now, I have no idea if any of those children had other conditions. But, if there were that many children that died of the flu, you can imagine how scary it is to me with a child like Ben, who can not fight off illnesses easily. So, of course, we do everything we can by protecting him with his own flu shot and by getting our flu shots as well.

Mommy and Ben flu shot selfie

I was really shocked to hear a couple of people on this board claiming that they themselves do not get the flu shot. They do other stuff instead. I won't go into details, as I do not have their permission to post their statements. But, suffice it to say, I was (of course) up for a while debunking some myths about the flu shot. Which were still persisting in to this morning (I mean, come on. Someone was WRONG on the internet! ;) )

I try my best to make sure people have the correct information, and help correct myths that have heard. Such as, "the flu shot will give you the flu". Which, no, it can not. If you get sick after getting the flu shot, you were already sick. Or you got sick at the doctors office getting your shot. Another one I have heard is, "I never get sick, so why should I get the flu shot"? Which again, it is all about herd immunity and protecting little guys like my Ben and his friends. Or, "if your flu shot works you should be fine and not worry about other people not getting theirs." Again, another yay for herd immunity. IF we can keep herd immunity high enough, then people who can't be vaccinated, or for who the vaccine is not quite as effective or who don't seroconvert will still be protected because it will be less likely that the illness will be able to get hold of our most vulnerable (and psst, it's not just our little ones. It's the pregnant lady in line next to you. It's the mom who might be going through chemo that is picking up her kid from daycare. It's the 85 year old grandma who visits her grandkid who doesn't yet know he has the flu because he doesn't feel sick. All of them are at risk.) By the way, follow that link on herd immunity to some great memes that explain it really well, as well as this one. And FINALLY, here is a debunking of ALL of the flu vaccine myths that you have probably ever heard. Yes, I know I posted it on facebook. But, I am posting it again in case you need to use it for some family members. Enjoy. http://www.redwineandapplesauce.com/2014/10/10/33-flu-vaccine-myths/ 

Quite a week

And it's only Wednesday. On Saturday, Ben was playing around as we were getting in to bed. Just as I said, "Ben, no, stop" He fell against the side of the bed. Right on to his eye. Right after it happened it looked like a hard not. Today, 4 days later, he has a bruise around his whole eye, looking like he was in a fist fight. He also has 2 small red dots near his eye, I think they may be cuts. It looks horrible, but it could have been much worse, he could have hurt his eye :(

This is what it looked like right after.

On Sunday, we went to the Great Midwest Train show. The kids all had a lot of fun. Ben loved seeing all of the trains. The girls did too. They also loved looking at all of the stuff for sale. They had a few Halloween type things for sale that we bought. They also sold ice cream and we all shared a root beer float. Well, I drank the rot beer part, the girls and Ben ate all the ice cream out of it ;) All in all it was a very nice day.

Watching trains

Great Midwest Train show

Monday night, we were walking up the stairs to go to bed. Ben wanted to bring a toy up with him. I told him "no, you have too many things in your hand. You need to just walk." He dropped his toy and I turned around to pick it up. Just as I turned around to see where it went, Ben fell down the stairs and hit his head on the baby gate. At first I thought it was just that his legs got hurt. But then, I saw all the blood. He was losing a lot of blood from his head. His shirt was covered in it and so was mine and my pants. He did throw up one time as well, which made me worry about a concussion.  Joe got dressed and took him to Edward Er. He was still screaming at that point, but Joe said as they were driving he stopped screaming. Joe said that he was going really fast to get there in a hurry and Ben liked that. Later on when they got home Ben told me "Daddy drived me really fast on the sidewalks." No, Joe did not actually drive on the sidewalks, but he did try to get there in a hurry. When they got there, the first thing they did was clean him up and put a bandage around his head to try to stop the bleeding and figure out what was going on. Then they did a CT, which they did not even need to sedate him for. I was shocked. I figured they would definitely need to sedate him for that, but Joe said he was fine. The CT came back normal, so they put in 2 staples (which Ben asked me yesterday, "can you take these things off my head?") and said he was ok to go home, they had talked to cardiology, and cardiology also agreed he was fine. He could take a bath or shower the next day. I did wipe him down before school. They said he was ok to go to school because he did not have a brain bleed or concussion. I still woke up all night long checking on him, because, I'm a mom. I mean, obviously. His teachers said he had a great day and did not slow down at all despite the head wound and his eye wound. I felt weird going in with him all bruised and broken. Like "here's my broken son. No, we honestly did not do this too him. No really, he truly did fall. Twice this weekend." I do want to ask his PT about it tomorrow. Like is he having stability issues? Or is this normal 2ish year old stuff? SO, that is our week so far. I hope everyone else has had a much calmer week than us! :)

Bandaged up after they cleaned him off

Getting his CT scan

All one getting staples in. Such a brave boy. He got a popsicle

The good and the bad

So, Ben had his pulmonology appointment on Thursday. His doctor said he is doing much better. His lungs sound really good. Even though he had a slight cold at the appointment, she didn't hear anything to worry about. We went over what to do should he get sick, his asthma action plan and meds. She refilled his inhalers and gave us another spacer. And then, she said we could come back in 6 months! Not 3 months, 6! So, we get less frequent appointments with this doctor too. Which is good. The less I have to drive to Arlington Heights, the better for me :)

Playing while waiting for the doctor

We then got to go home, or rather go to school and pick up his sisters. This weekend, Ben also had a lot of fun visiting with his cousins, nana, and his grandma and grandpa. Grandma and grandpa were in from Indiana. So we went over to his nana's house to celebrate his cousin Alan's 14th birthday. And on Sunday, we went apple picking in Woodstock. So, he had a very fun filled weekend!

Eli and Ben having a snack

Klara and Alan reading together

Grandma holding Ben and talking to Eli

Anthony and Abby playing soccer

 

Eli and Ben playing with a Fisher price pig

Apple picking

Showing off the goods

Finding more apples

Today, Ben was back in school after his long weekend. No phone calls from the school. I was happy since I was halfway expecting the school to call with SOMEONE being sick. Seeing as how the last 2 Monday's in a row, I have had to cancel my clients. I figured, Murphy's law and all, I would end up cancelling again today. But no, everyone was good. No one was sick. Well, that was until the end of the day. At pick up line, Ben's teacher came up to me to tell me that Ben's ear was bleeding during nap time. And then she showed me his ear which was clogged up with lots of blood. So, I called the pediatrician and made an appointment for today. We were seen right away. The pediatrician said that he couldn't see all the way in to his ear because of the blood clogging it up, but, from what he could see, it was quite inflamed and possibly ruptured. His ear tube seemed to be in there still, but he could not tell for sure. So, since he is already on an antibiotic for his GI issues, he did not want to add another one. So, he put him on an ear drop to help the ear infection. If the bleeding has not stopped by Wednesday or Thursday we need to come back. And we also need to be rechecked next Tuesday. But, besides that, he is doing great. And he is all set for his next PT appointment this Thursday. Which, I can't WAIT for her to see our enormous trampoline! That will be another post though :)

Ben is still sick, going on day 5...

Honestly, we have no idea where Ben picked up this recent illness. It may have come from school. Or it may have come from the grocery store, or a doctor visit. But, I felt the above was prudent to post as cold and flu season is upon us. We are now on day 5 of diarrhea for Ben, and it is not just the occasional once in a while diarrhea. It is all the time. To the point that he was in the ER for re-hydration yesterday and is now limping or refusing to walk completely. The doctor yesterday said this could be because it is a bad virus and he feels really weak and that is how the body aches are manifesting for him. He is still barely eating anything. We are trying to push fluids as much as we can. So, yes, weakness is a definite possibility. And with his immunosuppression, any virus will most likely last a lot longer than any of his friends. He seemed to be getting better last Thursday and Friday. And then Saturday it got a lot worse and that's when we ended up in the ER yesterday. And today he is seeming a little better with the diarrhea, but he is very weak and complaining of pain in his legs. If he still won't walk tomorrow, he has to see his pediatrician. Who he just saw last Wednesday as well. It is possible that all the diarrhea depleted all the magnesium in his body. He is already very low on magnesium, that's why he takes supplements. So, with diarrhea, it is very possible it got completely depleted. And the pains he is feeling are muscle cramps.

So far, I had to take off last Wednesday, and then again today because Joe is out of town. Which, don't get me wrong, I am happy to stay home with my baby when he is feeling bad. And, I am so grateful I have a job that lets me rearrange my whole schedule to another day. I have filled up my entire day tomorrow with my clients from today and my clients I normally see tomorrow. And Joe is staying home tomorrow to bring the kids to school (We have yet to see if Ben will be able to go) and pick them up so I can see my last kiddo at 3:30. But, I just want to say, I don't even think about it. If he is sick, or if the girls are sick, I keep them home. I don't medicate and send them to school. I would hope that anyone who thinks about doing that, thinks about Ben and looks at the above and thinks again, or look at the pics of Ben below. Think about who you might get sick and how bad it might get for them. It might be a simple illness for your child, but it might be a really long illness or even a hospitalization for a medically fragile child. This is what Ben has looked like the past couple of days. And he has been waking up at least once an hour screaming in pain at night. Please think before sending your child to school sick.

ER visit yesterday

Didn't even want to get back on the bed. And complained when I tried to put him there.

PT update

Ben has started back with PT once a week. It was recommended at his 6 month meeting that he go back up to once a week to give him a boost before he ages out at 3.  His PT Was having him do some "step-ups" and "step-downs" off of a stool we have and watching how he did it and noticed that he still twists his body to step-down, thus using his side muscles instead of his quadriceps. His quadriceps are a bit weaker. Also, his left side seems to still be a bit weaker than his right side. This could be due to many many wires that were in his legs. She did ask about that when we were talking. She also mentioned getting a trampoline to work on his jumping skills, which, we now have.

Jumping in the trampoline with Klara

As soon as it came, we blew it up and all the kids wanted to jump in it. We got Ben in it and he did about 5 jumps right away and then sat down. He then got out for a few minutes. Then got a stool so he could get back in, thus doing more step-ups on his own! He did this many times over the course of an hour. He would get in do a few jumps and then get back out. He and the kids have been jumping in it and walking around in it a lot today. It is HUGE! We didn't really know how big it was when we ordered it. :/ It takes up most of the dining room. BUT, at least he will be able to work on a lot of his skills with this. Also, the girls can work off a lot of energy on days like yesterday when it was too rainy to go out. The other thing that the PT mentioned that she might want him to use are HipHuggers. These are lycra type shorts that are tight and are supposed to keep his hips aligned. He would only wear them a few hours at a time each day. And hopefully it would stop him from turning his hip out when he steps down off of steps. We are not sure when his next appointment will be. At the latest it will be Oct 4. But hopefully sooner. He is supposed to be weekly, but he has medical appointments the next 2 Thursdays that we can not move. An his PT is very booked up. She is trying to find a Friday that she can see him though. His next week appointment is Hematology. I am hoping his iron levels will look better since we have raised his iron. I am also hoping that his magnesium levels will look better since we not only raised his magnesium, but also spaced it out. Cardiology said that spacing it out instead of giving it all at once should help not only his GI issues but his levels. So, hopefully we will see that on his labs on Thursday.

And a pic of Ben and Joe. Just because.

Labs and audiology appointment

We had Ben's cardiology and kidney appointment last month. At that kidney appointment they determined that his kidney disease was improving a lot! Well, they decided to let him do a challenge of sorts. His medicine that he is on to help his kidneys is called Cytra-2. He takes this every day at 2:30. The kidney doctors told us to have him stop taking it for a week and then do labs to determine if he still needed it. They were very hopeful that he could come off of it because his labs looked so good and his kidney ultrasound looked great as well.

 Well, we did those labs as well as a prograf lab on Wednesday. They got back to Joe with the results rather quickly. They like his levels for this kidney lab to be around 24. But they have always settled for 22 or 23 because every time they try to increase his Cytra, he has massive GI issues. Well, when he did this Cytra challenge, his numbers dropped to 18. Which is just not acceptable at all. So, we had to go back on Cytra that day. But, apparently Kidney had not told Cardiology what we were doing. So, when they called Joe with the Prograf levels, they told him, "His Prograf numbers look great. No change there. But, his kidney levels have gone down. Something is going on with his kidney to where his kidney disease is worsening." So Joe had to explain what we were doing, and then they understood that, no, nothing was getting worse. We just needed to go back on the meds :)

Yesterday, August 28, Ben also had his Audiology exam. The Audiologist asked if we have any concerns about his hearing. Which, no, no concerns there. He hears me opening a candy wrapper from 2 rooms away and comes running :) I think he did pretty well for being 2 years old and it being a 45 minute exam of them wanting him to sit still quietly and wait for noises to pop up. Towards the end he was just done and kept telling me "mommy, I go now. I'm all done." A few of the louder noises scared him and he tried to get away and told me "mommy, I want you!" Which means "I'm scared." He was sitting on my lap, so there was no where else for him to go. The tech said that he passed for the most part, but, there were a few where she really couldn't get a good screening. Well, yeah, he's 2. And it's taking quiet a while. But, then the part where they put things in his ear was perfect. He passed that and they said his ear tubes are all the way open. Which is good.

Next appointment for Ben is PT next week, then the dentist, hematology and pulmonology. Lots to update for September :)

Back to school with his sisters!