A truly Merry Christmas

Merry Christmas!

I have always loved Christmas. It is my favorite time of year. And since becoming a mom, it has become even more special. I get to see the magic of it all through my kids eyes. The fun they have just riving around looking at the Christmas lights. Or helping put the tree up and the ornaments on. Klara telling me, "oh, we can't do this one because it's your special delicate one." It's just an all around great time of year! Most of the time.

Cardinal George blessing Ben last Christmas

Last year was not such a great time of year for us. Ben was in the PICU. He was very very sick. His heart rate kept creeping up, even with the maximum amount of heart meds.  He was blessed by Cardinal George last year. And I was afraid of not seeing another Christmas with him. For that reason, I did not want him to be alone at all. Ever. Joe, the girls and I opened Christmas presents with him in the PICU. Then Joe stayed with Ben, while the girls and I went to Kohl's house to open presents with the rest of my family. Joe did come over briefly to Kohl's house when we lost the skype connection. Then we all went back over to the PICU. It was a very sad Christmas for us. I even dressed Ben up in a Christmas outfit. I still have that outfit. the nurses had to cut it up to make room for all of Ben's lines.

This Christmas, I feel so very thankful. But, I am also reminded of the reason that Ben is here. I am so very grateful that Ben is here with us. I am so happy that he is crawling around, and for the most part is very healthy. He loved all of his presents this year. He loved watching his sisters open their presents and playing with their things. He gets such a smile when Abby built a tower for him from his blocks, and then he knocked it down. It was a fun game to him. He also loved playing with all the boxes and paper from all the gifts.

I am forever thankful to the donor's family for giving us this awesome gift. We have Ben here spending Christmas with us. He is so happy. But, it also makes me think of how they must be feeling this year. Last year, they had their baby with them for Christmas too. They might have been playing with him/her around the Christmas tree, taking pictures. And, this Christmas, they don't have their baby anymore. It pains me to think of the hurt they might be going through at this time of year. Ben got his heart a little over a week after Christmas. So, while we are forever thankful that we have Ben, I am also thinking of his donor family during this time. Joe and I are writing the letter to his donor family soon. I hope that the fact that their child lives on in Ben might offer them a little bit of comfort. I hope that knowing that he is truly living a wonderfully full life and is alive, thanks to their selfless gift in a time of sorrow, might help ease the pain a little. Words can not express how I feel right now. All I can say is, I feel very very thankful and truly blessed to have this year with Ben and hopefully many many more to come!

Sickness issues again

We have had the yuck come through the house again. It has been one thing after another with every one of the kids. Luckily, Joe and I have not caught anything. That would be bad to be sick with 2 healthy kids and 1 sick one. Dec 6 and 7, Ben was at the pediatrician for a cold and fever. Then, last Thursday,  the 13th, I brought him back because his cough was worse. She diagnosed an ear infection. We started a 10 day course of amoxicillan. I was hoping that would be the end of the sicknesses.

As if that wasn't bad enough, the throwing up started, unfortunately, on Saturday when we were at my mom's house in IN. Ben threw up once and we thought it was just because he had eaten and my mom was bouncing him on her knee. So, we didn't make a big deal about it. Then, on Sunday, he threw up 2 more times in the morning. Then, Klara started saying her tummy hurt. She was acting so miserable for about 4 hours. Then, she finally threw up. On my mom's kitchen floor. Ben threw up 2 more times on Sunday. He also had a fever of about 99.8. Klara had a fever of about 100.5 that night. Klara woke up Monday morning and was fine. Ben threw up another time in the morning. We hoped that he would be better after that, since  he started acting more like himself. The whole time, he also had diarrhea. I was worried we would need to go to an ER in IN and would be stuck there. Almost every time we have gone to an ER, they have admitted us. And I would rather be at Lurie or Edward, if possible. We left Monday evening and stopped by Red Robin for dinner. Ben was acting like himself again, so we tried little bites of food. Joe then went to the bathroom and Ben threw up. I had to strip him naked. I had no extra clothes in my purse, so Joe ran out and got an extra outfit for him. We changed him and he felt better. We got in the car and got on the way. When we were about an hour or so from home, Abby started saying she was really nauseous. I gave her Klara's bag since Klara was asleep already. We had her do some deep breathing. She closed her eyes and said she felt better. Then, all of a sudden she screamed "I need my bag! I need my bag!" And then threw up. She then handed the bag to me. I took it, smelled it felt sick. I told Joe, "you need to pull over somewhere or I'm going to be sick!" Abby said, "no mommy! Don't throw up in the car! Throw up in the bag." I told her ok. I kept my hand over my mouth and nose so I wouldn't smell it and told Joe, "I'm going to be sick." Abby piped up from the back, "But, at least I'm feeling better. Right, mommy?" We got to a gas station and threw out the bag. As soon as we pulled in to our driveway, Abby screamed, "I have to throw up! Right now!" Joe rushed to get her out of the seat and she threw up in the grass.

We think Abby was just car sick. She does get car sick, though she hasn't ever thrown up before. Klara felt better. But, until yesterday, Ben just kept throwing up any time any little amount of food got in to his stomach. Even a cracker made him throw up. I was getting very worried about dehydration, or even the possibility that it was something with his heart. Rejection, or an infection possibly. Today, he is starting to get a bit better. He was able to eat 4 crackers and a tiny piece of bread and some apple slices. And he kept them down, which was the best part. He has been nursing extra to make up the calories, and we gave him a bit of pedialyte. Joe took him to the pediatrician yesterday and he had lost a bit of weight. He also still has diarrhea, but he is not dehydrated at this point. Which is why we need to keep pushing fluids. The pedi said not to worry too much about food until he has been vomit free for 24 hours or more. Just worry about the fluids to keep him hydrated. So, that's what we're doing. Hopefully everyone is sickness free before Christmas. I'd rather not have anyone sick on Christmas day.

One Year Ago

Dec 12, 2011

One year ago! It has been one year and what a year it has been! Ben has been on quite the roller coaster ride, and taken us with him!

One year ago today, I thought I was taking Ben in for a tummy bug. We had all had a GI bug go through our house. The girls got it, Joe got it, then I got it. I assumed since I was breastfeeding that Ben would not get it. But, he started throwing up. Since he was one month old, they had us bring him in.

One year ago, I brought our baby in to the pediatrician, he started having breathing problems on the way there. The pediatrician administered a breathing treatment, for which Ben did not wake up for. The pediatrician did not like that, so he sent us to the ER.

One year ago today, I left the pediatrician and headed to the ER, thinking they would keep us overnight possibly, since he was so little and was throwing up. Maybe dehydration?

I brought him in to the ER. The nurses looked concerned. His temp was 95.4°. I remember this because I thought it was due to it being so cold out. They said that no, his temp would not be that low just due to being in the cold. They started the same battery of tests they do for a high fever in a baby. Catheterization for urine, blood, spinal tap. He didn't even flinch for the blood. That worried me, but I still didn't think we would be there more than a couple of days. The nurse in the ER let me know that we would be observed in the PICU for at least two days, maybe a week. I thought, "I can handle that. I don't have to start work until January 3rd. This will be fine. We will get through it." We got to the PICU and things went down from there. The PICU attending at Edward thought Ben's liver felt enlarged. They did an EKG and X-ray and more labs. At this point, I was thinking Ben might have some liver problems. Which I thought that was horrible. Little did I know, at that point, that it would be much much worse.

One year ago today, they told me they were calling the head of pediatric cardiology to come personally do an echocardiogram on him. It might be a problem with his heart since they saw something weird on the chest x-ray. They wanted her in there personally, since she was the best one at Edward. They told me she should be there in about 20 minutes. While we were waiting they told me his breathing sounded funny again and they might want to have him on a vent. I started crying, but wanted to do what was best for my baby. The head of cardiology got there and reviewed his EKG and did the echo. She had me sit down. She told me my baby would need to be vented and had a problem with his heart. Something called dilated cardiomyopathy. Basically his heart was not squeezing hard enough. The cardiologist also told me that he was in very critical condition. He might not make it through the night, and they needed to life flight him to Lutheran General because they had an infant ECMO machine and Edward did not. I had been on and off the phone with Joe and my mom all night. I had told my mom I didn't think she needed to come at first. After I heard that, I called her and Joe back. I told Joe to get down there right now. Luckily, our friends took the girls, even though it was midnight. Joe says the girls knew something was going on and were very good about getting up and in the car. I called my mom and, between sobbing, told her she should get down here right now! Since she is in Indiana and we are in IL it took her a while. The cardiologist came back in and talked to me, she said that she changed her mind and wanted Ben at Children's Memorial in Chicago. They were the only ones in Illinois that could do an infant heart transplant if needed.

One year ago, that's when I heard the words "infant heart transplant." Something no mom should have to think about in relation to her 1 month old. Ben was getting worse before my eyes. I had the nurse call the chaplain. He talked to me, he blessed Ben before his helicopter flight. He held me up when I thought I was going to collapse from grief. He was a wonderful man! I am very thankful he was there, especially before Joe got there and I only had one of the nurses talking to me. The flight crew from Lifestar-1 came in to transport Ben to Children's Memorial. I kissed Ben a lot. The nurses warned us that he may not make the flight, but it was safer than an ambulance, they would get him there quicker. Joe and I rushed down the highway at breakneck speeds, beating the helicopter there. We got there at about 3 in the morning on Dec 13th. My sister met us there about fifteen minutes later.

Making mischief!

It has been very hard reliving this. I have cried a few times thinking it all over. How critical he was, how my family all came to the hospital sometime between 3 AM and 8 AM and were with us all day. How we all worried forever. Would he make it through each night? What would we do with the girls if this turned in to an extended hospital stay? How would they react to their brother being critically ill? How hard it was seeing 5 doctors, three or four nurses, a respiratory technician and the paramedics all in his room at Children's Memorial, fighting to save his life. Fighting to give him a second chance at life. Luckily, we had some amazing friends that helped us out tremendously, letting the girls stay overnight on their school days and helping with transportation to the houses they would stay at, or to school, etc.

But, as you all know, the story does not end there. Ben received his second chance at life on January 5th, 2012. His beautiful new heart. For which we will be forever grateful to his donor family. I will of course, be posting about that on January 5th, 2013. The moments leading up to that, the call, and the day of surgery. You can all expect another long post then (for which I am sure I will need to take another three days to prepare to fight through the tears). We saw our baby laying in the tiny little crib and I kept fearing the worst every single day. When his heart rate would shoot up to almost 300  beats per minute, I didn't know if he would make it. When he needed more pressure support, I worried. I can not even begin to say thank you enough, to the donor family. How hard that must have been to make that decision. They made a very selfless decision in their time of grief. And because of that, our son is here today, making mischief as any 1 year old should. Thank you from the bottom of our hearts!

Cardiology and kidney clinic

Ben's favorite nurse!

Ben had his cardiology and kidney clinic on Weds 11/28. He is doing amazingly well. Kidney decided to drop his Cytra down to only one time a day, which is great because he hates that stuff, and it gives him diarrhea. The kidney doctor even saw evidence of that during clinic, so maybe now he believes it a little more. :)

Cardiology said he is doing very well. He is up to 21 lbs and 29 1/2 inches. The only minor problem is, he can't keep his Prograf levels up. His trough level they wanted him at used to be 10-12. He was consistently at about 8 or 9. But, since he is so close to a year post transplant and is doing well, they decided to drop it down to 8-10. Well, wouldn't you know, now his trough levels are coming back in the 6-7 range. Ugh! So, we had originally tried not feeding him before and for an hour after his prograf was due. Let me tell you how much fun that was! Do you know how miserable it is to tell a 1 year old who thinks he is starving, "no you can't eat for the next 2 hours. Sorry baby boy." :( It's horrible. He would scream and scream until I would give in. It didn't always happen, but when it did, man was it difficult.

So, anyways, when he had his Prograf levels drawn again on Wednesday, he was again low. 6.7, I believe Joe told me, which is no good. The APN agreed with Joe and I that we don't think feeding him before or not feeding him before is making any sort of difference. So, they asked us if we would like to go down on his Prograf, but give it 3 times a day, or go up on the prograf and give it 2 times a day. Well, at first I flipped out at the idea. I mean, I did not want to ruin his sleep even more, or my sleep! Joe had suggested doing 7, 3 and 11. Ack! That meant he would be up until 12 probably. But, then when I thought about it a little bit more, we could do 6:30, 2:30 and 10:30. This would be much easier, though it might mean his nap got cut a little short. But, 10:30 was a little bit better. So, now we have meds 4 times a day, unfortunately :( We have his 6:30, 2:30, 6:30 and 10:30 meds. I was so happy on his 2 times a day schedule. But, the good news is, he may come off of Cytra altogether soon. Though, we will still have other meds anyways. So, I think we will be at 4 times a day for a while. But, at least his prograf dose is lower now. He gets 2.5 ml of prograf three times a day, as opposed to 5.6 ml three times a day. This confused me, but basically, Joe explained that since he will be getting it more frequently, he needs less to keep his levels up. This should also help his kidneys, and his potassium. His potassium levels were great last lab, but lowering the Prograf can only help more!

So, after Joe was done with labs, he had some people from Lurie sign Ben's birthday book. He had his cardiothoracic surgeon, the surgeon's assistant, his cardiologist, a few of the APNs and our favorite nurse from the PICU sign his book. This will mean so much to him when he is older. I know he doesn't care right now, but we love it! And it will be great for him to look back at. Mariah, the nurse from the PICU, said "Oh my gosh! I was having such a bad day today. But seeing you looking so great, my day has just gotten tons better!" We love that she was able to see him so healthy. The last time she saw him, he was 4 months old and 2 months post transplant. He still looked good then, but the majority of the time she saw him, he was hooked up to 14 different meds and a vent and so many machines! We also left a pic of him for the PICU to hang up on their success board. :) I'm sure they love seeing their success stories!

Thanksgiving

Our little family

 Today, we have a lot to be thankful for. I thankful for my family, both my immediate family and extended family. They mean the world to me. I am so thankful to have such caring and supportive people in my life. I am also thankful that my grandma will be coming home from the nursing home tomorrow. We have been worried about her being there. So, we are very grateful that she will be able to go to her own home tomorrow. She will be much more comfortable there. And, I know I have not mentioned it on here, but she fell and hurt herself recently and has been unable to walk. So, I am also thankful that she is able to have a caregiver come to her house instead of being stuck in a nursing home.

I am also thankful for a job that gives me such flexibility so that I do not have to work holidays, and I can make my own hours. I have worked jobs, in the past, where I had to work holidays. I usually got stuck with Thanksgiving, Christmas eve and 4th of July. Now, I make my own hours and can decide when I work, as long as I see my clients in a reasonable time period. This also means, I am able to take time off for Ben's different appointments and for the girls school functions and things like that. I am also thankful that Joe has a job that allows me to work at a job that I love so much. This is truly my dream job and I am so fortunate to finally be able to do the job that I love so much. However, due to budget cuts in Illinois, as well as the  fact that we can not have Ben in daycare yet, I would not be able to do this if it weren't for Joe's job.

But mostly, I am so very very thankful that in their time of grief, someone chose to be a hero and donate their loved one's organs. We are able to see our little guy grow up. We get to see him crawling around, and walking with a walking toy, playing with his sisters, babbling at us, and generally getting in to mischief the way any normal 1 year old would. When I think back to that day in December that Ben was diagnosed, we didn't know if he would make it day to day. I never allowed myself to think about him turning 1 because I didn't know if it would happen. I cried one day when we were in the hospital, because I saw a little baby, about 6 or 7 mths old and I was terrified that Ben would never be able to see that age. But now, here we are, he is 1 year old and thriving and doing so amazingly well! This Thanksgiving we are much much more thankful for all we have in our live than we ever have been. Knowing how fragile life is, just makes us appreciate it even more. 

Someone's started walking

look who's walking! from Stacy Hillenburg on Vimeo.

Ben is One!

Birthday boy!

Tired baby! 

Ben had his birthday party on Saturday. We all had a great time. It was a little difficult getting everything set up with three kids underfoot. Abby and Klara were pretty well behaved for the first 20 or so minutes we were setting up, but then they started running around in circles. Ben was just exhausted. He had about an hour long nap in the car on the way to the restaurant. We had the party at Basils Greek Dining. Then didn't nap again at all the rest of the day, except for a 20 min car nap on the way home. So, he was very overtired! But, all in all, it was a great party! We were happy that so many of our friends were able to attend. We were also saddened that a couple of friends could not attend. Two were because of illness, and one was due to a scheduling conflict. We very much appreciated the fact that, if people were sick, they stayed home. Most of the time, people would be annoyed by a last minute cancellation. In this case, we were very happy that people care enough about our little guy to reschedule with us. We knew there would be a ton of people there, so the risk of infection was higher than we are normally used to. So, anything we could do to minimize that risk was great! It's so crazy. I mean, with the girls parties, we didn't really care if people had minor colds or sore throats. Well, except for Klara's party. My dad had just started chemo, so we didn't want anyone who was obviously sick. But, we also didn't turn anyone away really. But, now, we have to be so hyper aware of anyone who is sick. Even just a minor cold is a major illness for Ben. I never thought we would be worrying about these things at his 1 year old birthday party. But, that is exactly what we do.

Cute hat! 

Ben actually turned 1 yesterday, on 11/12/12. We didn't do much for the day. We had to do a little shopping. Ben was at first, asleep sitting up in the cart. Then he chose to lay down and chew on his biter biscuit. He was exhausted from the long weekend. We had his party Saturday and spend the weekend at his nana's house visiting his grandma, grandpa and cousins. So, Monday, we kept it relaxing so he could catch up on some much needed sleep. And so could I! We went to Trader Joe's for some groceries and spent the rest of the day at home. Today, he has still been pretty tired. He was yelling at me when we went to meijer. He perked up when I put this hat on him. I think he really likes it. I may have to go back and get it :) Tomorrow, Ben will be coming with us, and the girls will be staying with my sister. We are going to the Mended Little Hearts meeting, where Bill Coon, author of Swim: A Memoir of Survival, will be speaking. Coon was one of the first four infant heart transplant recipients in the Midwest. He then went on to have a second heart transplant, as well as a kidney transplant at the age of 21. It is amazing and makes me so hopeful that his first donor heart lasted so long. And he was one of the first! So, the technology was still really in it's infancy! I can't wait to hear him speak! I am hoping to have him sign Ben's birthday book as well. I am really excited to be going, and will update about it either tomorrow or Thursday!

Almost 1 year old!

We had Ben's 1 year appt on Tuesday. He had a great appointment! The dr said he was almost caught up with his development. He is pretty near caught up physically and he just has a few minor things that he needs to work on with fine motor development. Physically, he is looking great! He has apparently gone through a growth spurt recently. He was 30 1/4 inches long and 20 lbs 1 oz. He is only in the 25th % for weight, but the 75th for height! She is not worried at all since babies tend to lose weight between 12-15 mths from being so mobile. He has finally broken the 20 lb mark! The dr said that we can feel free to switch to whole milk, or keep nursing, or any combination of the 2 if we would like. I am going to try to keep nursing him as long as he wants to. I feel like it may have helped him stay fairly healthy, even with being immunosuppressed. I'll probably try to give him some whole milk as well, just to get him used to it. But, we also have a ton of breastmilk in the deep freezer to get through. He also got 2 shots at that appointment. He handled them like a champ. Screamed for about 2 minutes and then it was over. He will be getting 2 shots at each appt from now on and should be caught up by the time he is 18 mths old

His physical therapist said that she is confident he won't have any trouble walking and that he is getting so close. She doesn't want to discharge him just yet though. The reason for this is, if he were to need orthotics (which apparently can be common with kids who have had long hospitalizations) we would have more trouble getting them if he was already discharged. She doesn't think it will be an issue. She thinks he looks like he has great posture and that his feet look good.

All in all, it was a great appointment! We also have his NICU follow up appointment on Nov 26. this is where they follow his development until he is about 5 years old. They do this with all kids who were in the NICU or PICU as infants. Studies have shown that when kids are hospitalized for long periods and especially sedated or paralyzed, that can affect their development. So, the NICU follow up is to make sure his development is on track and, if it's not, to recommend services. So far, he has only been slightly delayed in speech and, obviously delayed physically. I am eager to see what they think of him at this appointment since he has made such great strides!

I am thankful

Ben's first Halloween and Klara's 4th birthday!

It is Nov 1st. So, that means I have been seeing an abundance of "I am thankful for..." posts on Facebook. I know that we have so much to be thankful for, but I am not the type of person that likes to list them all out in multiple facebook posts each and every day. So, I thought I would just talk about it all in one post on here.

First, I am thankful that we have a roof over our heads, enough food to eat, great jobs and a way to get to those jobs and the awesome insurance Joe's job provides. So many do not have that right now, due to Hurricane Sandy :(

Also, I am thankful for my husband, Joe. I don't know what I would have done if I had to do everything on my own. When we were at Kohl's house, we met one woman who was a single mom and had her own medical issues and was facing her child having to undergo multiple surgeries in Chicago, while her other kids were back in Arizona. I can not imagine doing that all on my own.  Joe was very good with keeping me from falling to pieces. I was, understandable, very emotional at that point. I mean, come on, I was 1 mth post partum and my child was in critical condition. I think anyone would be feeling the same. But, he was able to let me cry and have my anxiety riddled moments and then help me calm down and move forward with things. I think had I been alone, I would have had a major breakdown. So, I am very grateful for Joe being there and being such a great husband.

And speaking of Kohl's house, I am very thankful that there is such a place, so that families don't have to make the decision of "do we rent a hotel, or do we leave our baby here until they are better?" They just request a donation of $10 a night. But, even families who can not afford that are not turned away. I also am grateful for friends we made at Kohl's house who are on the same or similar paths as we are. Not because I want anyone else to go through transplant, but because it helps to have friends to commiserate with that have been where you are.

I am also thankful for my kids. I am thankful that, for the most part, Abby and Klara are very healthy and they are definitely very smart and beautiful. I am also thankful that Ben has come through his transplant and has had no major issues such as rejection or major infections. Sure we have had a couple of respiratory viruses and a GI bug, but while they were scary, they were nothing major like some people, on different heart boards I am on, have to deal with. Yes, I have had the occasional complaint about, "OMG, why won't this child sleep? I need sleep!" But, I am grateful I get to complain about that and not that Ben is in the hospital still waiting for his gift of life, or worse that he didn't make it.

But, most importantly, I am thankful for Ben's donor family. I am thankful they made such a selfless decision in their time of grief. I am thankful that, because of his donor, I was able to see Ben celebrate his first Halloween yesterday. He was able to help Klara celebrate her 4th birthday yesterday. Because of his donor, we will be able to go travel to see my mom in Indiana next month. He will be able to go to his nana's house for Thanksgiving this year, and so many more things. So many people die waiting for their perfect organ to give them a second chance at life. We had to wait 3 weeks, and while we were waiting we thought it was taking forever! But, in the grand scheme of things, 3 weeks is really not that long.  Right now, I am looking down at his sleeping little body laying in my lap. It just boggles the mind that someone else's heart is in his body. Someone made the decision that they wanted their child to live on in my child. They did not want another baby to die, so they decided to donate their child's organs. The amount of gratitude I feel for Ben's second chance at life, well, it can't even be put in to words. Though, I am going to try. We plan on writing to Ben's donor family very soon. We want to include a picture from his first birthday in the letter so they can see how great he is doing and how thankful we are that he is able to celebrate his first birthday.

I am also thankful for the great friends and family we have. So many people supported us through what was the most difficult thing we have ever faced with one of our children.  Not only through such things as logistics like, "where will the girls sleep tonight? How will they get to school in the morning?" But also, through emotional support when things were getting tough as well as generous donations from friends I only know through my online community of mommies.  Even though I have only met a few of them, they all supported me and my family through a difficult time. For that we are also very grateful.

So, this is my thankful post. I am sure there are many more things I am thankful for. And maybe there will be another thankful post as it gets closer to Thanksgiving. But, I didn't want to forget anything, and well, I am not that great at remembering to do a thankful post every day. I am barely able to remember to get my girls lunches packed every night :) And, I would also like to take this time to remind everyone again that being an organ and tissue donor is one of the best things you can do. Please register to be an organ and tissue donor. You never know whose life you might save!

Donate life! Be an organ and tissue donor!

Now THAT'S a file!

When you get your medical file for your child, you probably get a few pieces of paper. If they have had some hospital stays, maybe you get a stack of 15-20 pages. Not Ben. Nope, we got a BOX of papers. There must be between 1500-2000 pages here! And this is only the papers from when he was inpatient awaiting transplant and post transplant. The pediatrician gave it to us today because they were trying to figure out what to do with it and asked us if we wanted it! Joe said, "Sure, we can scan it and then just shred it." So, we're going to go through all of these pages and scan them and then I intend to read through some of it. Probably not all of it. I can't even imagine how many hours/days it took the pediatrician to read through all of that. Now, when cardiology sends anything over, they just send their summaries. Back then, the pediatrician wanted everything. They wanted all x-rays, all echoes, blood draws, dr reports, everything. Now, it is a bit easier. Though, I am sure there is still a stack about 1/4 this size from things from March until now. 

Some good news and some discouraging news

Hawaiian bread...yum!

Some exciting things happening as well as some discouraging things. First, the exciting things. So, Ben's physical therapist was here on Monday. She saw how well Ben is doing and said, "oh, this makes me so happy and so sad at the same time. You are doing so well you aren't going to need me soon!" Except for some low tone in his upper body, Ben is doing really well. He has even started feeding himself larger pieces of food. He was eating Hawaiin bread all on his own tonight. Ben has also started cruising around the furniture more often now. And, instead of army crawling, he is crawling on hands and knees almost all the time now. I almost felt a little sad to see him stop army crawling, because it means he's not a little baby anymore. But, he does have to grow up at some point.

We also have had quite a few labs done in the past week. His labs came back yesterday, and the APN said that they all looked really good for the most part. His prograf (immunosuppressant) was a little low. So, (and this is the slightly discouraging part) they want us to switch the time of his meds so that he is not eating right before he gets his prograf. We switched it to 6 pm yesterday and he looked so pitiful watching us eat and wanting to eat. I gave him a little Hawaiian bread and he got a little happier. But, he likes eating with us. So, we are going to switch his prograf to 5 am and 5 pm. That way we can still eat dinner as a family at 6. He needs to take it on an empty stomach, so he can't eat an hour before or an hour after. They are hoping this will help the absorption of the meds and that way we won't have to keep going up on his prograf dosage. But, it is a bit discouraging because of the fact that it was nice only having meds twice a day and now we're up to 6 times a day. He gets the prograf at 5 and 5 now. Then 4 other meds at 7 and 7 and cytra at 8:30 and 8:30. Though we are hoping that he will be going off of cytra soon.

The really hard part is he still has his cold and so he is still eating very frequently. So, today. I fed him at about 3:45. Then I gave him his prograf by 5. Well, of course he wanted to eat again at 5:10. I was able to hold him off for a little while. But, by 5:45 he was completely hysterical and would not calm down for anything. So, I nursed him and at 6 he ate some bologna. Well, since he had gotten so frantic, he ate really quickly and kept wanting more food. I stopped him after eating a whole slice of bologna, but he still threw it all up. :( We're going to have to figure something out, because I can not keep listening to my baby frantically scream because he wants to eat. It goes against every instinct I have. Hopefully he will get used to it and stop getting hungry right around then. Otherwise, the only other choice we have is to do his prograf 3 times a day. Which is even harder, but it may be what it comes down to, unfortunately. The other problem with the timing of prograf is, when we do his labs and have to get levels for prograf, we have to hold the prograf until after his labs. Well, the earliest the lab opens is 7 am. So, it would be bad to hold his prograf for 2 hours. Generally they don't want it more than an hour either way. So, it's ok to give it an hour early or an hour late,  on occasion (not all the time). But, they don't want it getting really late. So, we will have to ask his transplant pharmacist what we should do about that.

In other news, Ben's cold does seem to be getting slightly better. He isn't coughing as much and he does not sound as phlegmy when he lays down or when he nurses. Though, he is still eating frequently and still waking up in the middle of the night to nurse and then staying up for a while after he is done. So, the antibiotics must have helped something. But, lucky me, right when he started getting better, I got whatever it was that he had. Fun times. So, now I have a cold and all the kids are getting over their colds. Ah well, such is life when you have young kids. They bring home tons of germs. Especially when they are in preschool and kindergarten. I guess we are lucky we haven't had anything much worse than colds and sinus infections. So, that is good. Hopefully everyone is well soon and we can ALL stay well for an extended period!

Air Ambulance

Today, Ben met his flight EMT, Debra. There were others in the flight crew that early morning, and indeed, there were many medical professionals who were responsible for Ben being with us today. Some did more, and some did less, but nobody can say that flight EMTs are not one of those who do more.

Debra's crew is based just outside of Joliet, Illinois and operates an MBB/Kawsaki BK117B2. Their crew base is set up with accommodations for several members of the flight crew. Like fire/ambulance crews, they work just a few days a week, but each shift is very long.

Ben wasn't the only one who was at the flight crew base. His sisters got to take a tour of the facility, and sat in the same helicopter that Ben flew in.

A cold for Ben means lots and lots of tests

Picture of the torture chamber infant x-ray

So, I think I have mentioned before, if Ben gets sick, it means lots and lots of appointments. We had hoped that this time would be different. But, I guess it was not to be. We saw the pediatrician a week ago Thursday. That was when she diagnosed Ben with a bad cold. Then on Wednesday, I had Joe turn his polio shot visit in to a sick visit as well. Just to make sure. They diagnosed him still with a really bad cold that was threatening to turn in to a sinus infection and prescribed antibiotics. We had hoped that would be the end of that.

I should have known, nothing is that easy. Well, as part of keeping communication open, whenever Ben is seen by the pediatrician, they call and send a report to the cardiologist, and vice versa. Well, apparently the cardiologist that worried about every little thing was on yesterday. Oh, I should mention here, yesterday morning Ben had gotten blood work done and a collection container sent home for us to collect a stool sample. This was after a long run around where we first went to CDH. I got there and they did not have the orders in the computer. They said it would be about 15 minutes they could call the dr to get them. Then another 20 for us to register. Then there were about 7 people in front of us that we'd have to wait until our turn. In a germy waiting room. With an 11 mth old who is immunosuppressed. Yeah, I'll pass. So, I called cardiology and had them send the paper owrk to New Lennox. We went there and were in and out. And let me tell you, it is awesomely fun to have to try to get poop out of a diaper and in to a collection container. Yep, loads of fun.

But, back to dr worry wart. So, as per their protocol, the pediatrician had called the cardiologist yesterday to tell them what they saw and that Ben's lungs were clear and no ear infection or anything. Well, I don't know why, but dr worry wart decided this warranted a chest x-ray as well as an additional CBC and BMP. Yeah, we had already finished getting labs done by that point. And no, they couldn't just take it from the blood already collected. It needed a different tube. So, last night, Joe took Ben for his torture chest x-ray. It seriously looks like a little torture chamber, which is why I wanted Joe to go. I could not stand seeing him in it again, all smooshed in a little tube :( Poor baby.

Then, this morning we got to go visit the vampires lab tech again.  She felt so bad for having to stick him again. Plus, it was so much more fun. Because she stuck him on his right arm yesterday, she didn't want to go there again today. But, after trying his left arm, she determined we would have to do his right arm again. It's his better vein. So, the poor little guy has a big bruise on that side.

Well, I got a call from the pediatrician today. She said that there is some inflamation on his chest x-ray which is indicative of a viral process, nothing more. No pneumonia or anything else suspicious. Whew! We are SO relieved about that! I am really really hoping that Dr. Worrywart doesn't see that there is inflammation and get all freaked out and say we need to admit him. I will NOT be happy if that happens! 

So, needless to say, if Ben gets a cold and we have to go through all of this, it would be SO much worse if he were to get something like pneumonia or the flu or anything else. This is why we are asking everyone, please get your flu shot and your pertusis shot if it has been more than 10 years since your last one. And, if we ask how you are feeling or if you have had a sickness recently, please don't take it personally. We obviously want to keep Ben as healthy as we possibly can, and not have put him through all of these tests again anytime soon. Also, if we ask you to wash your hands or use hand sanitizer before touching Ben, please understand it is not personal. Also, for those invited to his birthday celebration, this will be even more important since we know that when there are lots of people all in the same room, germs spread more easily. It is all just to keep Ben healthy during cold and flu season, and always. 

Dr visit and polio vaccination today

Well today was Ben's polio shot. I wanted to make sure he was ok to get it with how sick he has been. So, Joe had them do a sick visit as well. Well, first of all, he is 19 lbs 10 oz. He gained 4 oz since last Thursday. Woohoo! I was afraid with all of the diarrhea we were going to be looking at another loss. They did the sick visit too. I asked Joe to mention how Ben is up alllllll night long coughing and sounding very mucousy. He is barely getting any sleep. I being him in steamy rooms a couple of times a day. I also tried putting him in a car seat to sleep, but he screamed and tried to lunge out. So, that wasn't working. I also asked him to mention Ben throwing up a couple of times due to the mucous in the back of his throat and the wet sounding cough. Well, they said it was a really bad cold, but prescribed antibiotics because it looked like it was going to turn in to a sinus infection. The good news is, his lungs and ears are both clear. He is now on amoxicillan. I asked why his bactrim wouldn't help against the infection, but apparently it just doesn't.

Ben also got his polio shot today and as long as he is ok, he will get his flu shot booster in 2 weeks, along with the girls getting their flu shots and Klara having her 4 year check up. Abby and Klara have already told me, "I am going to scream and run away from the nurse." Oh joy! I am so looking forward to that visit :/ At least Joe will be with for that one as well. If there's any running away, he can catch whichever girl it is, lol!

I also had Abby's kindergarten conference today. I just have to brag on her for a minute here. Her teacher always starts off our meetings with, "well, what can I say about Abby? She is just a true joy! I love how interested she is in everything." I was so proud hearing how well Abby is doing in everything in her class. Her teacher said, "she is a true Montessori student. She is so caring, such a leader and always interested in learning the why's of everything as well as how things work. She is very respectful and never interrupts others (say what?!? My Abby? :D ) Now, just as a reminder, Abby just turned 5 and is in kindergarten. She is learning how to add 4 digit numbers using the golden rods, she is also learning to exchange numbers, which is the start of learning how to carry over when you add 2 digits and 2 digits. As well as when you subtract. Her teacher also told me, "She is such a great reader that I can;t just give her the phonics books from here. I have to go to the elementary classroom and grab books from there for her to read." Overall, it was just such a great conference. The only negative thing she had to say (and it wasn't all that negative) was "Sometimes when she and N and S are in the reading corner, they get a little silly and start tickling each other and i have to tell them 'Ok you guys, now it's just a tickle fight. Out of the reading corner so others can have quiet.'"

I am just SO pleased with how well she is doing. It does bring up a concern though, which I mentioned to her teacher. I don't know what to do with her next year. I really want her to stay at Montessori, but if we put her in public school, she is going to be so far ahead of other kids. I mean, she is learning stuff 3rd and 4th grade public school students learn! Her teacher even said, "I know, I feel bad for her future teacher because she is way ahead of the public schools. But, I never push her, these are all things she is wanting to learn about." We also need for Ben to be at Montessori. And, it wouldn't be fair to take Klara out of Montessori. Ben needs to be there because they know all about all of his issues and we have total confidence they would take great care of him, as well as they would make sure he is in a classroom where all children who are able, are vaccinated. And we know they would call us to come get him if anyone was to come down with any illness.

So, basically now, tomorrow we have labs for Ben to make sure he doesn't have a GI infection as well. We also have labs for his magnesium levels to see if he can come off of that as well as a kidney panel to see if we can lower or get rid of cytra. I don't think he has a GI infection, but you never know. So, now we're just hoping for him to get over this congestion and hoping the antibiotics take care of anything brewing as well as hoping to get to come off of magnesium.

Still feeling not so great.

I posted about a week ago about Ben having a cold. He is going in spurts now of feeling ok and feeling pretty crummy.

Kids watching Cat in the Hat together

I took him to the pediatrician on Thursday and she confirmed that it is still just a cold. But, if he gets any worse, any breathing problems, high fevers, high heart rates, etc, she wants him in the ER at either Edward or CDH. I am just really hoping it doesn't turn in to bronchiolitis again. He was pretty miserable all week and most of Saturday. He did play with his cousin and sister a couple of times. Today he seemed a bit better. Then just a couple of hours ago, he was nursing and sounding like he was drowning. He would stop every couple of seconds to breathe. So, he is working harder to nurse now. Well, I called the nurse and she said as long as he is not working hard to breathe and is staying hydrated, we don't have to come in. But, if he shows any signs of trouble breathing or has a fever, they want him in the ER. I keep wanting to just rush him straight to the ER just to make sure. But, of course there are major germs there too! So, that's not a great idea.

I also received a message from his kidney doctor today. I wanted to talk to him about the diarrhea Ben is experiencing that I believe is due to his Cytra-2. The kidney dr basically said that it can not be from the cytra-2 and that it is most likely an infection or his magnesium and I should call the cardiologist to get labs done. So, I called the cardiologist APN and she and I both agree that it is definitely not the magnesium. He is on the smallest dose he has ever been on and he was not even having diarrhea at twice this dose. We will be getting labs done at CDH on Thursday to make sure it's not some sort of infection. We will also be checking his PH levels as well as magnesium levels to see if he can completely go off of magnesium. If all comes back clear then the APN said we will discuss what to do about the cytra. Between his cold and the diarrhea, I am just afraid of him not getting in enough nutrients. The APN agrees with me about that.

Abby and Klara got slight colds too, but obviously Ben is fairing a little worse because of his immunosuppression. They are already pretty much over their colds. I just started getting some cold symptoms as well. I am hoping that Ben will get over this easily. I know it will probably take a bit longer than most kids, but I am hoping that it stays a cold and nothing worse.

Not feeling too great today

Someone doesn't feel so great

Last week we were at my grandmas house for my 12 year old nephew's birthday party. My stepfather had a cold, but we wiped everything down and he stayed far away from Ben, so we thought we were safe. Well, we probably would have been if it was just for that. But, the next day, my sister called me and told me my 2 year old nephew was really sick. He had a bad cold that they think turned in to an ear infection as well. We were hoping for the best and Ben seemed ok. But, then today, he has had a low grade fever and a very runny nose. He has coughed a couple of times, but nothing too bad. So, since he was doing ok, we went to talk to the manager of the place we are having his party. Then we went out to dinner and to Target to get a few things.

 While at dinner, Ben ate a ton of food. I should probably have known that I should have stopped him. But, he screamed when I would stop feeding him, so I thought maybe he is going through a growth spurt. Well, we went on to target. As we were leaving, Joe said, "maybe we should change him before we get in the car. He is pretty stinky." So, he got a diaper and went to change him. I checked out. As soon as he came over to me after changing him, Ben puked all over himself, Joe, my pants and on the floor of target. It was seriously like the exorcist, there was so much vomit. I think it was partially due to eating so much and partially due to the runny nose making his tummy queasy. So, I ran him outside and stripped him. and, OF COURSE, the clothes I had in my purse were too small. Why wouldn't they be?

So, I put him, naked, in to the car seat and bundled my jacket over him. We drove the 5 minutes back to our house and I plopped  him in the tub and Klara got in with him and helped clean him off. After a couple of minutes in the tub, he started acting like his old self. He started splashing and giggling and playing with Klara. When we got him out, he started getting crabby again and did not want to take his meds. He is on a new med called Cytra-2. It is because at his last few labs, he was slightly acidic. They don't want him to get too acidic, so they started him on this med that is basically medical baking soda. Well, that's how Joe explains it. Of course, this med also can cause diarrhea, upset tummy and it interferes with aspirin. So, I was a little wary of giving it right after he threw up anyways. AND, it's 9 ml. That is a lot for a little baby to take. Especially after throwing up a ton! Well, he did fine with it. He wasn't happy about it, but he did ok. And he is sleeping now, so hopefully he stays asleep for a while and gets some rest.

I knew we couldn't keep him in a bubble or anything. And of course, it's not my nephew's fault Benjamin got sick. He was perfectly fine last Saturday and then on Sunday, all of a sudden he was really sick. I just hate seeing him so sick and not like himself. He is in his crib with baby vicks on his feet and if need be, I will give some tylenol later. I am just really hoping this doesn't turn in to bronchiolitis again! That was no fun for any of us at all, especially Ben.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 I wrote way back before Ben got his transplant about what this poem might mean to me. I was thinking that life would change so much whether or not he got his transplant. I was so scared back then. Not knowing what was in store for us. We didn't know if he would be able to eventually be medically managed. Would he have a transplant? What would transplant life be like? Would he ever be able to do things normal kids are able to do? It was all very scary. We had taken home this perfect little boy. Then at 1 mth old, it all changed. Our world was not the same. We had detoured away from Italy somehow and landed in Holland. None of this was anything like the life we expected to live with our kids. And we were terrified. Now that we are on the other side of transplant, I can say, while it is disappointing that we did not get to go to Italy, I can appreciate all the good things about Holland. Ben is doing so well with his new heart. Yes, there are meds, and therapies. We never had to deal with that with our girls. Yes, we have to be ultra careful with any illness, whereas with our girls, if someone had a cold, it was no big deal. Obviously, we didn't go out of our way to bring them around people who were sick, but, if we found out someone was sick after we saw them, well life goes on. We also have so many more medical appointments for Ben than I ever had for the girls. So, there have been disappointments on the way. But, also some very good things. If it weren't for Ben needing to stay out of daycare, Joe wouldn't be spending nearly as much time with him during the day. Each little milestone is a complete joy to see because for a while there, we didn't even know if we would see Benjamin ever open his eyes again. The girls are so good with Ben and while no child should have to know the names of so many meds, they love helping us with all of Ben's meds. I also have met some really great people thanks to being a part of a special group of moms with heart transplant babies. And while, I don't think anyone WANTS to have their baby have a heart transplant, I am so grateful for these friends and having them as a support system of people to lean on that have been here before. So, while we are not in Italy, and we are not having the life we imagined, we are loving all of the little joys and good things that this life is bringing us. And Holland is turning out to have some pretty great things.  

What are we going to do with you, Ben?

"Who says I need PT?"

This was said by his PT today. In a good way! :) So, we had his 6 mths progress meeting 1 week ago. At that time, Ben had met all his goals that they made when he was 5 mths old, so his PT had to make new goals. So, those new goals were, Crawl in a 4 pt position, go from crawling position to sitting position, stand up from a kneeling position, cruise, and finally walk. Well, this weekend, Ben decided to accomplish 3 of those goals! All of a sudden, he started crawling on all 4's with his belly off the floor. Not far, but he is doing it. He is crawling that way for maybe a couple of feet, then he reverts to army crawling. His PT would like him to be using that type of crawling 50% or more of the time. He also started going from the crawling position in to a sitting position just today. AND, for the last couple of days, he has been going from kneeling to standing. So, the physical therapist came today and saw him doing all of this and said, "oh my goodness! I just can't believe it! What are we going to do with you, Ben?" So, now we are working on facilitating cruising. It will probably still be a while before he is walking on his own. He is still very unsure of himself and will try to reach a hand out like he is going to grab on to something else and walk over to it, but then he will pull his hand back in and stay where he was. Though, there are times he is fearless and will pull up to stand and just let go like he thinks he knows how to walk already! :) He still has some work to do. But, maybe he will be walking by his first birthday. We are still working on him using his pincer grasp to pick up foods as well as working on him getting the foods to actually go IN his mouth instead of in his hand and him forgetting where it is until it's a mushy mess. But, he has come a long way since December, and we are so happy about that!

"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!