"You should just keep him inside and homeschool him."

So happy!

So, as many of you know, I am avidly pro-vaccination. I was recently on a pro-Vax board, Shot of prevention, commenting on an article. An anti-vax person came by and commented on my comment, telling me that I should "keep him inside and homeschool him," because she did not want to vaccinate her kids due to Fear, Uncertainty and Doubt (Abbreviated FUD) about vaccines. But, even if she was afraid of vaccines, her opinion was that she should be allowed to go to public school while unvaccinated, but that since my son could possibly get terminally ill from a vaccine preventable disease, I should keep him in a bubble. Now, mind you, I do often think about just wrapping him up and keeping him in a bubble so that no one and nothing can hurt him! Especially knowing that there is an anti-vaccine movement, and not many, some but not many, people who are staunchly AV will ever be swayed to vaccinate their kids and themselves.


But, to get back to this comment. This really angered me, as well as some of my very pro-vax friends. The anti-vax movement is definitely based on FUD (and a nutty D-list actress spreading lies) and there are so many lines I hear all the time from AVers. One is "If your vaccines work, why are you afraid of my unvaccinated child?" I hear this at least 2-3 times a day on boards and pages I am on. This is the most illogical statement. Many people are afraid of the unvaccinated due to the diminishing herd immunity that happens when enough of the population is unvaccinated. There are also people for who vaccines just do not take. They do not seroconvert, and thus do not produce antibodies to the vaccination. We also know,  no vaccine guarantees 100% immunnity. Some have only an 80-90% efficacy rate. Therefore, the more people who are not getting vaccinated, the more herd immunity lessens and then people like Ben and his heart buddies, people who the vaccine does not work for and people who can not be immunized for medical reason are the ones most affected. 

This brings up another point. While for some people, a vaccine preventable disease might not be that bad, or even a "right of passage in childhood", for others, these same diseases can be life threatening. For instance, If Ben were to get Chicken pox, or Measles, it would be very critical. We have 72 hours to get him a VZIG or IVIG shot. And even that, the effectiveness is not known, but it is the best preventative they have for immunocompromised patients. This is why I am so very staunchly pro-vax. Not just for my own child. But, also to protect all children like him as well as those who are too young to vaccinate or medically unable. This is one of the differences between pro-vax people and anti-vax people. Pro-vax people worry not only about their own children, but about the welfare of all of those around them. Anti-vax people do not seem to care about any other children but their own. Which, this would be fine if they were basing their decision on any kind of science, or if it was not a public health issue. They are not. Their decision is based on FUD and misinformation. There are many different myths going around right now about vaccinations. Quite a few of them have been refuted here.

Like I said before, I would love to wrap Ben up in a sanitized bubble. But, that is not possible, and it also defeats the purpose of having a heart transplant. We didn't  get him the transplant so that he could sit in our house all day and never see another person. We got him the transplant so he could grow up and live a normal life like any other normal little boy. Now, of course, that means I will forever be nervous about any little germ out there, especially VPDs. And I will be looking closely at the vaccination rates at any school we send him too. And I will be asking the administration at any school he goes to to make sure that we are notified right away if someone in his class comes down with any contagious illness more major than a cold. As I said above, if he is exposed to chicken pox, we have about 72 hours to get him preventative shots. These are all things we need to do to keep him safe so that he can grow up in to a smart, healthy little guy!

He sure seems to be doing OK.


Ben crawling from Stacy Hillenburg on Vimeo.

Kidney clinic 9/18/12

Nana, Ben and Joe

So, Joe took Ben to the kidney clinic yesterday. The cardiology team had referred him there because of his past few labs. They wanted a renal ultrasound and some labs done and then a meeting with the kidney fellow. Well, lets start with the good news. His Potassium is down. So, we don't have to worry about restricting food anymore. Yay! His magnesium is up, so we are at 2 ml of mag once a day now. Though, this may change next week since they drew labs at 9 and he had his morning dose of mag at 7. It may have been artificially high. This was the case for his prograf levels yesterday. The APN called to tell us his prograf levels were 13.2. When I reminded her that he gets prograf at 7 and they drew labs at 9, she changed her mind about lowering the dosage of prograf. Instead, we will repeat labs next Thursday.

SO, now for the not bad, but not so great news. So, Ben had a renal ultrasound done and labs and talked with the kidney dr. Apparently, he has chronic kidney disease, stage 3. This sounds really scary! Don't google it, or you will see things about needing a kidney transplant and dialysis and that it is irreversible, and needing many many more meds. Yeah, I googled it, even after Joe told me not to google it. I can't help it! I'm a worried mom. But, just save yourself the trouble and worry and don't go looking. The dr's explained it to Joe, and he explained it to me, so it is 3rd hand information and I am going to try to remember what he said. I'm sure if I get it wrong, Joe will update this with the correct information. :) So, basically, the prograf is hard on the kidneys and while he does have some issues with his kidneys (they are apparently functioning at 2/3 capacity) it might not be this chronic kidney disease. Also, his kidneys DID receive some damage before his transplant. As a function of the heart failure, all of his organs started shutting down when he went in to cardiogenic shock. They reversed this with the meds that helped his heart, but still, his organs took a hit before they got him stabilized. There is a very good chance he will outgrow this as his prograf dosage gets lowered. Right now his trough level range is 10-12. So, they keep bumping him up because he has been in the 7-8 range. Once he is 1 year post and his biopsy looks good, he will most likely go down to 8-10 for the trough range. Then they can lower the prograf dosage. What this means for us right now (since he is only 8 mths post) is frequent labs and not raising the prograf levels too much each time. Cardiology and renal will be working very closely to monitor both things. They also told us to keep him very hydrated since that will help his kidneys function better. There is also the possibility that he has what is called BK virus It is not very likely, but it is a possibility. If he has this, it would mean adding in another med for about a year and that would, hopefully, get rid of the virus and all would be well. The doctors were all very optimistic that he would outgrow this and his kidneys would be fine. They didn't even start him on any kind of medicine. We are just going to do labs next Thursday and then we will discuss the possibility of meds or adjusting the prograf dose.

The other thing they found was he is slightly acidotic. This is most likely due to  the fact that he just got over his diarrhea. It should be no problem. They said they see that in kids who have GI bugs. So, they will check that next week too. If he is still slightly acidotic, they will add in another med for that. Basically medical baking soda, to decrease the acid levels. He is also slightly anemic. So they increased his iron to 4 ml per day. 2 ml in the morning and 2 ml in the evening. That one is super fun since he hates iron. I am thinking of trying to mix it in with yogurt or something fruity tasting so he stops spitting it out. Oh yeah, that's Ben's newest thing, he likes to let the meds pool in his mouth and then dribble them out. Super fun :/ Luckily, for the most part, he likes his cellcept and prograf. So, we usually don't have a problem giving those. But, we can't have him anemic either. So, we need to get him to keep his iron down.

So, that's where things are. I guess we will be having a few more appointments to schedule now. Oh, and he goes for his DTaP shot today as well. I asked cardiology yesterday if, due to all this new stuff, should he still get the DTaP. The APN said it should be fine and they don't see a reason not to give it. But, they will defer to pediatrics for that one. I am glad he is still able to get that shot. I want him to get as caught up as possible, as soon as possible. We do not need him getting any vaccine preventable diseases on top of all of his other issues!

10 months already!

Why yes, I do love cookies!

Well, really he turned 10 mths old 3 days ago. But, can you believe this little guy will be 1 in just 2 short months? It's hard to believe. I mean, just over 8 months ago, I was wondering if he would even see 2 months old. We didn't know minute to minute how he would be. The nurses and doctors all tried to keep our spirits up, while still letting us know that even though he was doing well that day, he was still very critical. And now, here I am getting ready to plan his first birthday party. We're still scouting out locations. We can't have it at our house because we are inviting many many people and our house can only hold maybe 5 families. We're having the girls party here next weekend and I am sitting here going "what were we thinking? Where will we put everyone?!" But, I am sure it will be fine because there party is rather small. They have 5 of their friends coming (it was originally 6, but someone cancelled last minute).

So, we are scouting out locations for Ben's first birthday now. If the past has told us anything, there will probably be about 50 people in all. I think that is about the amount we had at each of the girls parties. We usually do big first birthday parties. I think I mentioned that in the last post. So, we are trying to find a location that is pretty kid friendly, and will accommodate a lot of people. If you know any in the SW suburbs, please let me know. I am all ears! I'm pretty set on a Dr. Seuss theme too. I have a ton of ideas from Pinterest! :) I already bought some little gift bag favors and I have some ideas for the cake as well. We know someone that is going to be making the cake. She mad the cake for Klara's 1st birthday party too and she does great work. She can custom make it to whatever we want, so that's good. Joe was also thinking about getting some "Donate Life" balloons for the party. We are still discussing that one. As much as I am SO happy that Ben has come this far, I also don't want to make the party all about how he had a heard transplant. I want it to be more celebrating his life, and the fact that he just turned 1. Which, I guess "Donate Life" balloons could go along with that. But, at the same time, it sort of seems kind of morbid in a way. If that makes sense. I was planning on having a small heartaversary party in January. Just close friends and some family. So, maybe we could do the balloons at that party.

Anyways, so I am really excited that Benjamin has come so far! I am SO excited and having so much fun planning his first birthday party. He might even be walking at the party. Who knows? He is pulling up on furniture now and standing there for a minute or 2. He does sometimes need a little help getting up, but he is starting to do it all on his own too! He is still doing his little army crawl, we are working on the 4-point crawl now. That's what his PT wants us to work on. 4-point crawling as well as getting from laying down to a sitting position. She is not worried at all about him not attempting to walk yet and was actually amazed that the girls walked so soon (Klara at 11 mths, Abby at 10 mths), since that is not the norm. So, Ben not walking is no big deal. But, who knows? Stranger things have happened :)

Some good news, and some bad news

So, Ben had his OT and speech re-evaluation today. He aced it! :) The OT gave us some suggestions to work on him getting food in to his mouth, but she said she has him at a 10 mth level and if he isn't self-feeding by 1 year, we should call her back. She thinks he will be, though. The speech therapist also evaluated him and said he is at almost a 10 mth level for her as well. It was funny, when they rang the doorbell, I sat him down next to the couch. In that few seconds, he pulled up to stand, on the couch. I was telling them how well he is doing with his PT. They walked in and saw him and said, "he certainly is, isn't he!" He heard the voices, got excited, let go of the couch and went down. He seems to think he can walk even though he barely learned to stand. :)

Klara was here during the eval as well. She was trying to help him with things. I had to give her the iPad so that she would be distracted. When the therapists left, she asked me, "why didn't you tell them he says 'babababa'?"She also really wanted the therapists to play with her too. She kept showing everything she was doing on the iPad. One of the games she was playing as Monkey Match, where she had to find matching rhyming pictures. I, and the therapists were impressed with how many rhyming words she knew.

In related, disappointing news, we have had our first party that we are unable to attend due to Ben. Well, there were other events that we have been unable to attend, but they were events that were easily rearranged or we did something similar another day. This is a friend of ours son's 1st birthday. So, obviously something that can not be moved. We were VERY grateful they told us beforehand that their kids came down with minor colds, so that we could decide if we wanted to go. Our girls LOVE their daughter. They are best friends and we knew it would be next to impossible to keep them apart. And, if they got the colds, Ben would , no doubt, get a cold as well. And, since he is JUST getting over his GI bug, I didn't want to add a respiratory infection on top of that. Especially since his last cold he got turned in to bronchiolitis. His immune system is so suppressed, I don't think he would be able to handle just getting over the GI bug and then getting bronchiolitis too. We are sad we can't see their son celebrate his 1st birthday though. But, we can always do something fun with them once everyone is sickness free.

Speaking of parties, the girls party is next Saturday. They are really excited about it, and they don't even know all that it entails. We are having something similar to Build-a-Bear come here. They will get to stuff bears and dress them and get an adoption certificate with the bear's name on it. We are hoping their friends will be healthy enough to come too. We planned a joint party for them this year, in September, because Ben's first birthday is going to be a big party and we didn't want to have another big party in August and then a big party for Klara in October and then Ben's big party in November. Probably next year we will start combining Ben and Klara's party and having both of them have a Halloween party. We're not sure yet, but that seems the most logical since Ben and Klara's birthday's are 2 weeks apart.

Clinic day

Well, Ben had a clinic appointment today. Every appt has it's own labs. So, he had a repeat of the labs he just had done on Friday. His Prograf level has gone up just a little. Not enough though :( It is at 7.9 now and his target is 10-12. So, we upped his dosage of prograf. The good news is his magnesium levels have gone up, so we get to come down a little on magnesium. But, his hemoglobin levels were low, so we had to go up to twice daily iron. So, 2 ml a day. And his potassium was too high. So, we have to not give him as many potassium rich foods, which is REALLY hard. A TON of his favorite foods are high potassium foods. Beans, avocados, bananas and so many more. This is going to be more difficult finding low potassium foods! They are talking about putting him on a drug to lower his potassium levels. We will probably meet with a nutritionist if they decide to put him on a low potassium diet. It is very difficult to figure out exactly how much he needs since he is growing. 19 lbs 3 oz now. He lost about 3 oz from his GI illness.

The other thing is, they want us to do a renal ultrasound. So, we have labs next Monday and then again on Tuesday and the ultrasound on Tuesday as well. Then they will decide if the kidney team needs to keep following him, or what the next step will be. I am a little worried about the fact that his potassium level is raised and his hemoglobin is low. I am hoping that whenever he gets over the diarrhea, that his prograf levels will stabilize and then he can lower his prograf dose which may help lower the potassium levels. That is my hope anyways. As long as all is good on the cardiology end, Ben also gets his DTaP shot next Wednesday.

We also have his speech and Occupational therapy re-evaluation this Friday (Sept 14). I had noticed that he wasn't really using a pincer grasp to pick up foods, as well as that he has difficulty getting food to his mouth. His PT also noticed that he wasn't really moving food from side to side in his mouth. He is, however, making progress with his physical therapy goals. He started army crawling a month ago and is going from a sitting position to a push up position. We are now working on getting from crawling position to sitting position as well as in the 4 point crawling position. We have his 6 month review of his goals and progress on Sept 22. We will discuss how well he is doing and any further therapy. But, the PT has told me she doesn't think she would discharge him at least until he is walking. It's just easier to keep going than to discharge only to find out he still needs help learning to walk or move around later on.

Abby also had her 6 month check up from her PDA closure. She is doing great and the cardiologist said she doesn't need to be seen for 3 more years, at which time he will also see Klara and evaluate her PDA as well. Believe me it wasn't fun getting the kids up so early today! Abby was up by 5:30, Klara was up by 6:00. Joe took Abby and Ben with him and needed to be to Lurie by 7. I had to get Klara to school by 7:30 so I could work. So, everyone is exhausted, overtired and crabby today. Especially Ben and Abby since neither of them got great naps. Klara, at least, napped at school.

So, that's where all the kids are. Generally, everything is going well. We have lots of appointments coming up for him in September and then a genetics appointment in October and then his NICU follow up, and another clinic visit and then his 1 year pediatrician check up in November. Now we just have to make sure nothing is wrong with Ben's kidneys and everything will be great!

Big sisters are awesome!

So, it is pretty awesome to see the girls with Ben, especially when we are in public. They are SO protective of him. Today I picked the girls up at school. One of Klara's friends got a little close to the stroller, but didn't touch it. Klara said, "you can't touch his stroller because there might be germs." I don't think the kid understood, but it was very sweet. Then later, we went to a restaurant because they did so awesome today when I had to be on a work call for 45 minutes. So, first we went to a restaurant and ate our food. I went to get some ketchup for the nuggets. While I went up, the girls stayed with Ben. When I got back, Abby told me, "We didn't let anyone touch him." She was so proud of herself! They are so protective of him and know how bad germs are for him. Well, maybe they don't know exactly how bad germs are. But, they know that if Ben gets sick, he usually ends up in the hospital, or we have a lot of dr appt's.

The girls are also great with his meds. Today at 7 pm, it was time for his meds and Abby asked if she could get them. I said it was ok. She called out from the kitchen, "so, Bactrim, Prograf and Cellcept and what else?" It's amazing that she knows exactly what meds come at each time. And she used to know all his other meds too, before we switched to only 2 times a day. It helps that we have color coded tips on each syringe. So, they know what color to look for. They really do look our for him. Klara is even getting better at covering her cough and sneezes and washing her hand or using hand sanitizer. When we first brought him home from the hospital, and also while he was in the hospital, she was really bad about washing her hands. She would say, "but I just washed them" and "just washed them" meant about an hour ago and she had gone to the bathroom or eaten since then. But now, she almost always washes her hands after going to the bathroom and after coughing or sneezing.

Ben will most likely be going to Montessori starting next August (as long as there are no serious complications *crossing fingers*) . I wonder if Klara will be as protective (or even more so) than she is now. There is a possibility that Abby will still be at Montessori, but at this time, we are unsure. Unless we can get them to help us out for the first couple of months with the tuition, so that I can get a bunch of clients and be able to take care of the tuition, we are unsure if we can afford 3 in Montessori. We would LOVE to have Abby continue on there, and it would be great for her. But, we know we need Ben there. And Abby has been there for almost 4 years. If we have to put her in public school, it wouldn't be the worst thing, though we really would rather have her in Montessori. But, we definitely want Ben there because they know his situation and are willing to make many accommodations. Some examples are, they told us they would do their absolute best to make sure he is not in a classroom with any unvaccinated children (well, if they are unvaccinated due to medical reasons, there is nothing we can do about that, just like he will have a medical exemption against all live vaccines.), they will let us know right away if anyone comes down with anything more serious than a cold. That way we can be sure to go pick him up right away and have him checked out immediately by his pediatrician and possibly get preventative meds. Just as an example, if he were to be exposed to chicken pox, he would need to get immunoglobulins within 72 hours of exposure. So, we need to know right away.  This really is going to be the best school for him and I will feel a bit better with him being there. I also love that Klara will be there his first and second year there. I am sure she will protect him. Like i said, they are great with him and you can tell how much they love him! :)

The sickness continues, I think

So, I last posted about how Ben had some wonky labs and the doctor was all "we need him in the ER RIGHT NOW! He could be possibly dehydrated!" Well, we had some labs done that evening and saw his pediatrician. The pediatrician checked him out and said he looked great. He was playing with the cords to the blinds and laughing and smiling at the doctor. So, after Joe got home, the on call cardiology fellow called and said, "well, he had a much better lab, but his potassium is still quite elevated, so the dr still wants him to come in because he might be dehydrated." Well, after a 10 minute conversation where the dr said he understood our side, but the cardiologist wanted him in, and us saying he was NOT dehydrated, he looked great! The fellow was finally willing to let us get a repeat lab at 7 am. It was so beyond frustrating because we know the dr who was giving these orders. She panics about EVERYTHING! She is always so quick to tell us he needs to be admitted for something or other and it turns out to be minor.

So, 7 am, Friday morning (Sept 7), Joe took Ben to Central Dupage Hospital (CDH) for repeat labs. I got there about 7:30 with the girls. Then Joe went to work. I brought Ben and Klara with me to drop Abby off at kindergarten. She loves kindergarten so much. We were supposed to go get donuts because they did such a great job getting ready that morning, but due to rain, construction and na accident, we were running behind. So, I promised them we could get one after school. Both girls were ok with that. We like to give them some sort of treat when they have to go with to labs. Especially when they are so good while they are there.

Later, that afternoon, Joe told me that they had called and said his labs looked great. That he did not look dehydrated on his labs at all. They had not gotten his Prograf level in, but were going to keep his prograf level the same until that came in. His prograf had been elevated on the previous labs. The bad thing about his prograf being too high is, it can cause problems with his kidneys. But, too low and it can lead to rejection. They want him between a 10-12 right now. As he gets farther and farther post transplant, they lower his target range more and more. Well, today, (Monday, Sept 10) they called with his prograf level. It was only 7.6. So, too low now. But, since we have a cardiology appt on Wednesday, they are keeping his meds where they are for now. They want to see if it comes back up.

The thing is, Ben has been sick with this stomach bug for 3 weeks now. So, since he is sick, it does crazy things to his body, which in turn affects his labs. For instance, right now, he is sitting on Joe's lap playing with my iPhone. But, an hour ago he threw up again and has had a couple of diarrhea diapers today. Yesterday, he was completely fine. So, it kind of just depends on the day you do his labs. If he is having any GI symptoms, it can mess with his labs.

All of this chaos and having so many medical appointments and him being sick is just one of the many reasons that we avoid anyone who is even slightly sick. And also why I sanitize everything that Ben might touch. If you see a crazy lady and a baby at the park and the crazy lady is sanitizing the swing and slide, that would be me :) I try to keep as many germs away as possible. But, somehow, Ben still caught a GI bug of some sort. We are not positive if he is still sick from the stomach bug or if it might be teething. But either way, he has been having these GI symptoms for over 3 weeks now. We are just hoping that he will get better very soon. But, of course, he does have 2 sisters. We never know what kind of germs they may bring home. And Abby and Klara love him so much, they are always kissing and hugging him and playing with him. Just today, He was laying on the floor and Abby was holding his hands to try to help him sit up. She is so sweet with him. Klara is too. She was shaking toys at him when he was crying. And right now he is sitting on Joe's lap trying to block Joe from watching tv. Any one of us could be carrying germs. It's just a fact of life. We have to be as careful as we can, but at the same time, Amazon is not yet selling bubbles that we can put him in, so we know he will get sick. We love how much fun he is being and love seeing him so playful and funny. He has gotten to such a fun age. Hopefully we can make it through a few more months without getting sick at all.

It is also harder on the girls when he is sick, not only because it takes more attention away from them. But, also because we can't do as many fun things like going to the park or a play place because, well, I don't want to be cleaning vomit off of a swing. And, I don't want him to get worse from some other germs. They tend to take it in stride, but I do feel badly for Abby and Klara when it happens. I also feel bad when he is admitted, not only because of the fact that he is sick, but also because it means I am away from the girls. So, like I said, I hope that we can stay germ free for a lot longer.

Another little set-back

So, when Ben was admitted, they did a Prograf level. His Prograf is one of his immunosuppresants. It was very very low. His target range is between 10-12. His was 2.5. We did a redraw a few days later and it was a little better at 3.5, but not high enough. So, we did another lab yesterday. We just got the call from the cardiologist a couple of hours ago. His Prograf level is 13.2. So, now it is too high. The nurse asked me all of these questions. Is he more tired than usual? How is he peeing? Is he taking in fluids? Is he seeming lethargic? Vomiting? Etc.

So, the reason for all the questions? Well, they had also drawn a basic chemistry yesterday as well. Apparently his potassium is too high and a few other levels were all too low, indicating dehydration. But, the thing is, he does not look or act dehydrated. He had recently put back on a bunch of weight, he is crying tears, he is playing with his sisters, he is a little crabby since his shot yesterday but not inconsolable.

So, at first the dr wanted us to go to the ER, but, I asked if it would be ok if we got labs drawn and saw the pediatrician tonight. The APN said that would be ok and they would decide based on tonight's labs if he needed to go to the ER for rehydration. I feel like if we showed up at the (germy!) ER with Ben they would look at me like I am nuts because he does not look or act dehydrated. But, that is apparently how it goes with these heart babies. They can look perfectly fine and not look dehydrated at all and then a minute later they're seizing because their levels are so out of whack! The meds that he and his heart friends take can really screw with all of his basic functions in his body. Obviously these meds are VERY necessary so that he does not reject. But, at the same time, they have some side effects too. So, we have to be very careful with him.

This is just another reason I and our whole family are fully vaccinated. We need to make sure to protect Ben. It is almost 2 weeks since he was hospitalized for dehydration. Yet, we are still feeling the effects of that stomach bug and the problems it caused. If a stomach bug can cause this many problems for him, I am terrified to think what something like whooping cough or chicken pox would do to him! :(

Right now we are just hoping for good results on tonights labs, otherwise we will be heading to the ER for fluids and more labs and possibly x-rays and echos. :(

Update: So, we have a GOOD update! Ben has had his labs drawn and read already. His potassium is still slightly high 5.9. But, he tends to run high normal anyways. Not anything that they put him on a special diet for or anything, but, in the higher range of normal. ALL other labs look great! No signs of dehydration at all. And the dr checked him out and agreed with us that he looks fine and labs indicate he is fine and there is no need for hydration. The other thing is, because his prograf was SO low, they upped his dosage quite a bit! He is on 5.2 now. Well, prograf increases potassium levels. Therefore, his potassium will be higher. The pedi is calling the cardiologist, but he thinks once we lower his prograf dosage, his potassium will decrease too and he will be fine. DH also said that the pedi thinks that this cardiologist (not our normal one) is a bit of a worrywart too. He said he didn't come out and say it, but sort of indicated that, lol!