No biopsy, again

Well, the biopsy was cancelled once again. This time for a cold. But, it wasn't cancelled outright. I had posted how at first the cardiologist said that Ben should be ok to have it if he was just having nasal discharge and a cough. Well, on Wednesday I got the pre-op call from Lurie. The receptionist went over everything and asked "is he ill right now with a cold or fever?" I said "yes, he has a cold. But, I had talked to cardiology on Monday and they said he should be fine to go ahead." She asked if it was a wet or dry cough. When I told her it was a wet cough, she replied "well, they are most likely not going to do it with a cough and nasal discharge, but they will want you to come in and be looked at." I told her "well, no thank you. If it is most likely not going to happen, I am not driving 2 hours to be told no, it's not happening. We will just cancel." So, she let me know that a nurse would be calling me back. She then called me 5 minutes later to tell me she had paged the nurse to call me, but that they had a note in the computer that they had talked to me on Monday and knew he had a cold, and they wanted him checked out even if they did not go ahead with the biopsy. I told her "I understand what you are saying, but I really can not afford to drive 2 hours, pay for Ronald McDonald house, pay for parking and come in all while KNOWING you are going to say no it can't be done. I want to cancel if you are pretty sure it won't be done." I think she was a bit irritated with me at that point.

After a bit of confusion on their part with the nurse calling Joe back instead of me and trying to schedule the biopsy for Halloween (also Klara's birthday!) and then trying for the next day, I finally got hold of the scheduler. We have the biopsy now set for Nov 21st. I am not even holding my breath that he is going to make it that long without getting another cold though. He is in the toddler classroom. He has 2 sisters that go to school. We go shopping. He is exposed to germs everywhere. And, his teachers are amazing! One of the teachers that helps out in his class told me, "I was supposed to help out in Ben's class last week, but I asked Miss L to help instead because I had a cold and didn't want to get Ben sick." So, everyone really tries to keep him healthy. He just is around a lot of kids, and being immunosuppressed, he is bound to get every single germ. It was funny, when I talked to the scheduler, she was the same one I had talked to the last 2 times we rescheduled. She told me, "I thought you were going to put him in a bubble!"

So, now we are doing our best to keep him as healthy as possible, as well as get him over this cold as soon as possible. And, it makes me a little sad. Yesterday, I was able to take Klara and Abby to the Halloween Happenings at the Park District. Klara has a bit of a cough too, but she is able to cough in to her arm and avoid germs a lot better than Ben. Ben could not go. There was too much risk of him getting or giving germs. More risk of him getting more germs though. Same thing with tomorrow, we were invited to a friends first birthday party and we can not go because Ben is STILL sick and Klara is still coughing. It's just things like that that make me sad. He takes so long to get over things and he has to avoid so much and miss so much because we need him to either get or stay healthy. He also missed a friends second birthday due to illness a few weeks ago. There were so many little kids playing games yesterday. I kept thinking, "man, I wish Ben was better so he could be here and enjoy this. He would love this!" It just made me a little sad not to have all of the kids there.

Add to that, we will probably need to take Ben and Klara in to the dr either tomorrow or Monday (yes, our dr is open on Sundays. How awesome is that!?) and it gets a bit frustrating sometimes. Still, we are glad for how well he is doing, overall. Even with being sick, he doesn't have a fever this time. So, no need to be admitted, yet. And he is pretty happy, even with waking up coughing multiple times a night. Although now he is getting kind of cranky and pulling on his ears. He is really tired, but keeps pulling his ears. So, we will most likely take him in tomorrow instead of waiting until Monday.

So, now we wait. We wait until tomorrow to see what the dr says. We wait to see if he is better in time for his biopsy. We wait and see if he catches anything else. We wait for Nov 21st and see if we can have the biopsy then. Crossing fingers once again.

With his silly sister, Klara

One week

We have been okayed to go ahead with Ben's biopsy next week even though he had antibiotics in the hospital while he was inpatient over the weekend. As long as he does not get any fevers, or come down with another illness. So, we have one week left until biopsy time. One more week. It is scheduled for next Thursday, Oct 24. We are still on the schedule to be at Ronald McDonald House next Wednesday evening for a (hopefully) early morning biopsy on Thursday. I am crossing everything that I have that he will make it to this biopsy without getting sick again. We have already cancelled 2 biopsies. He is now about 2 months behind schedule for his biopsy. I guess the good news with him being admitted at Lurie this weekend is, since he was there, his cardiologist was able to do an echo and EKG and labs, and they got a good look at his heart and cardiac wise, he looks great. His BNP looked the best they had ever seen it. So, he is now looking really good, except for a minor cough. We are hopeful that now his biopsy can actually happen this time. It is important for him to be able to get these done so they can check for rejection and check his coronaries. The EKG and echo are good, but not as good as looking with the biopsy. It makes us feel better every 6 months to hear that everything is ok, and there are no signs of rejection. Especially with how sick he just was. I really would like to get this over with and know that there are no signs of rejection at all. Cross your fingers, everyone!

Discharged from Lurie Children's

So, on Friday, Ben still wasn't getting any better. He still had fevers that were not being controlled by Tylenol. He also started throwing up after every dose of iron. He also was not drinking or eating very much. I called the Cardiology APN to see if we could hold iron to see if that would help his appetite. We got to discussing the situation. She called me back a few minutes later and said our cardiologist wanted him at Lurie. They wanted to make sure that his fevers were not heart related-possibly rejection or a heart infection. So, Klara and I went off to Lurie with Ben. Abby was at school. Joe arranged for her to stay in after care and he picked her up later. I have to say, for having to stay in the hospital with me and Ben for over 7 hours, Klara did amazingly well! She played a bit on the iPad, watched some tv, had lunch and dinner there. But she was amazingly well behaved.

When we got to the ER, they got us immediately back to a room. Ben still had a fever even though I had given him tylenol about 2 hours before that. They started with taking blood for labs and swabbing his nose for viral infections. Then they started up some fluids. The cardiology fellow came in to talk to me a little bit later and suggested we put him on antibiotics, *just in case something grows in the bacterial cultures*. I did not like this idea at all since he had been on antibiotics SO much over the last couple of months and I let her know .She was sympathetic and said we could wait a bit to see. The cardiologist and a whole team of people came in a couple of hours later. The cardiologist also wanted him on antibiotics in case something grew. He was very very definite about this. Because of his immunocompomised status, he didn't want to wait the 24-48 hours for something to grow, he wanted to start them right away. I was very unhappy with this, but decided to do it.

About 5 pm, we got up to our room on the CCU. Klara was actually, technically, not allowed up there because Ben was on isolation precautions. But, being that we had come through the ER and I had no where else to put her, they understood. And she stayed until 8 when Joe picked her up. When we got up there, I again wanted to talk to the dr, because in the ER, they discovered Ben had thrush. Which is due to antibiotics. My thinking, why give more antibiotics? Obviously antibiotics are causing bad things. And, today (sunday) we found out that nothing grew anyways. Which makes me more frustrated that they gave antibiotics for nothing.

Feeling pretty sick

Friday he was very sick looking. Saturday morning and part of the evening he still seemed pretty sick. BUT, he had his last fever register at midnight Friday/Saturday. So, that was good. By this morning, Sunday, he was doing a LOT better. He was stealing Joe's breakfast. When I got there he was sleeping. But, when he woke up, after resting a little more, he was hungry and ate 2 and a half chicken nuggets and 10 tater tots and some fruit snacks. He also drank about 4 oz of water. He was doing really well and his fever had not really come back. The doctor decided that we could go home today. We left around 6 pm today. On the way home, he was laughing at Abby in the car. He was SO happy to be unhooked from all of his wires. He is sleeping now. Has been since around 9:30. Hoping he will sleep the rest of the night. He still is a little weak. He doesn't really want to walk anywhere and he sits down. We have to have labs done and follow up with the pedi this week. We are just so glad to be home!

Ready to go home!

Day 3 of a viral illness

Ben and Klara went in on Monday, Oct 7, to have their ears checked to make sure everything was ok after they had both had double ear infections. They were both pronounced over their ear infections. Ben still had a little fluid in his ears, but nothing that was looking infected. Just left over fluid from his ear infection. Klara was totally fine. I mentioned that that day he had been running a low grade fever of about 99.5 and had been acting kind of lethargic. Just generally laying around. His appetite had slightly lessened, but nothing terrible. The dr looked him over really well. His heart rate was a tad elevated, but nothing worrisome. She sent us home and told us we would have a very low threshold for coming back. Any higher fever, any vomiting, more lethargic or not eating or diarrhea and she wanted to see him again. She also suggested keeping him home the next day even if he was feeling ok, just to get him over the hump.

Well, the next morning, around 7 am, he spiked a fever. It was 101.5. I gave tylenol and watched him. He only ate 2 mini muffins for breakfast. I called all my clients that I had scheduled that day to cancel. I, obviously, was not bringing him to school, and was going to need to bring him to the dr. For lunch, all he ate was a small bowl of cereal. After his nap, at 1:30, his fever spiked to 102.5. I gave tylenol again. Our appt was at 4:10. We got there and his fever was still at about 100. The dr looked him over. He was really lethargic by then. She was checking him over and he was pretty much just sleeping in my arms, which she did not like. So, Dr. B called the cardiology fellow to let them know what was going on. She came back in and told me, "well, I called the cardiology fellow and I didn't like what he said, so I made them get Dr. G on the line. I asked what was said and apparently the fellow wanted us at Lurie for a 48 hour admit and Dr. B advocated for us and said "no way. That is unnecessary. This is looking very much like a viral process which can be handled with labs and chest x-rays and if necessary we can have them go to CDH." Dr. G agreed with her (we love our cardiologist!) and said we could take care of everything in the suburbs. Dr. B thought it would be a good compromise to go to CDH ER and get some rehydration as well as get the labs and x-ray done there.

So, off to the ER we went. But, first, I took all 3 kids home to get Ben's meds. I did not know if this would be an overnight admit and I wanted to be prepared. I like to make sure I have his meds with me just in case. Sometimes the ER doesn't have them right on time and I can just give them out of our stash and keep theirs when they eventually come up. We got to the ER and Ben was NOT happy. Once he realized what was going to happen, eh started screaming. But, once they let him eat, he did eat 8 chicken nuggets. So, at least that was progress. They had a child life specialist come in and she was GREAT with all 3 of the kids. She brought the huge bubble machine and an iPad and played Elmo for Ben. It helped a little, I think, when he had his IV put in. They got him rehydrated and got labs done. The labs showed he was definitely dehydrated and definitely has a viral process going on. Which one, could take 24 hours to determine. So, we were sent home (see! No need for 48 hour admit!) with orders to keep up with tylenol every 4 hours. And when they say every 4 hours, they mean it! I missed his 2:00 am dose by 30 minutes. All of a sudden he woke up and started throwing up and was burning up. Temp was 102.5 on the thermometer, under the arm. Gave the tylenol. By 3:30 it still was 102.5. I stripped off all his clothes, down to his diaper. By 6:30, it was finally down to 101. Gave his 6:30 dose of tylenol and Joe said after that it stayed pretty low.

During the day, he had been reasonably ok. But, not eating a ton of food. And, as soon as his dose of tylenol is due, his fever starts creeping up. He was looking pretty good around 6, and I thought, "hmm, maybe I can see if we can skip his 6:30 dose. He looks ok." Sure enough at 6:25, his fever crept up to 100. So, no skipping that dose. I gave that, along with his other 6:30 meds, which include cellcept and iron. (we are skipping aspirin until he is fever free-off of meds- for 48 hours). Then exactly 20 minutes later, he threw up. A lot! So, I called the on call cardiologist, who said to redose only the cellcept, and if needed the tylenol. So now, I wait. to see if the fever creeps up to where he needs more tylenol. I am hoping he absorbed enough that it won't go back up. And I am hoping some good sleep will help him geto ver this tonight.