What This Hospital Stay Is Like For Our Family

Home before the hospital.

 

Our weekend was fairly normal to start. I'm going to start a little bit before the weekend though. Thursday and Friday Natalie was home sick from school due to a low grade fever and a few episodes of her vomiting. Charlie had a runny nose and a light cough and Willa was fairly healthy. Natalie stopped vomiting and her fever went away but she still had some cold symptoms. She asked if she could go to basketball practice on Saturday morning is she was better. We said as long as you don't throw up and your fever stays away you can go. Saturday morning she and Jeff went to basketball and she had a blast getting out of the house. After they ran a few errands. Charlie, Willa and I stayed home while they were out and Willa was still normal but Charlie's cough was getting pretty bad. Jeff and I had plans to go to his work Holiday Party on Saturday night and the kids were doing well enough we didn't cancel our plans. My mom came over to watch the kids we gave her the low down on what to do with the kids through out the night and told her to call or text if she needed us... She never called or texted so we thought everything was going great. We got home around midnight expecting the kids to all be sleeping and maybe even my mom as well... Well she was not sleeping and nether was Willa. Willa had thrown up in her bed and my mom cleaned her up and then brought her down stairs. I picked up Willa and said Jeff we need to take her temp right away she is so warm, well she had a fever of 103. My gut sunk because she was fine when we left and I knew that Charlie wasn't quite 100%. Well my mom left to go home because she had stuff in the morning she needed to be home for and Jeff and I were getting ready to go to bed when Charlie comes walking out of his room crying. I go get him and he is also burning up. I take his temperature and it is 103.4 and his cough is horrible, my gut was right. I knew we had to bring Charlie to the ER because he needs to go in if he has a temp over 101.2 and or vomiting, I start packing a hospital bag right away because there is no way we can wait to get him to the hospital. We gave him Tylenol and he threw that up right away. Jeff stayed home with the girls and I took Charlie in because Charlie wanted me to take him and is a lot harder on Jeff then he is on me. We left around 1 am! 

The ER at the U of M Children's Hospital.

We get to the ER a little after 2 am. There were 2 people that had gotten their before us and that was it. We get signed in and wait our turn I her the lady at the desk call back and say that Charlie is a level 3 transplant patient... We start in triage and do the normal weight, blood pressure, temp and height. Then they bring us back to a room. I knew we were in for a long night and is one of the reasons I do not like going to the ER at night unless we have to. Anyways The nurse starts by saying the ER doctor is busy so she is just going to put in an IV and try and get some labs drawn as well. Me being 1/2 asleep was like ok sounds good, not really thinking that she hadn't even talked to the ER doc to see what labs he wanted drawn, Transplant patients need more labs then your average person. In trying to get the IV in she blew 3 of Charlies fragile veins (that's 3 pokes for 3 veins) then she finally got one and got some labs out of it. Charlie was not happy and was screaming let go of me people. I wasn't very happy either. Then the Er doc came and saw Charlie and said he needed more labs, a urine sample and an X-ray. I was not happy they wanted more labs after poking him 4 times already. They get all ready to do labs and end up poking him 2 times trying to get labs... this is the most anyone has ever poked charlie in one day, I really wasn't happy about all his pokes. I was happy when they said that it was time for x-ray because I knew that he didn't get any pokes for that. We made it to x-ray and they were really nice and Charlie did great. the wanted to make sure he didn't have pneumonia. His lungs looked great! Easy test! Next test is urine sample. I wasn't sure how that was going to go as Charlie has always been bagged or had a catheter put in to collect urine, but I talked him into peeing in a cup because he had been through enough and I wanted another easy test for him. He did it with flying colors!!! Go Charlie! We get back to the room and Charlie is about to fall asleep... um yeah its the middle of the night! Anyways I found out no one had called the on call nephologist, one of the first things they should have done. and he wanted some more labs and a flu test. yuck and yuck! Charlie is pretty much asleep and they do the flu test, a swab up the nose if you haven't ever gotten one before. Not really something anyone wants as they are falling asleep. then the nurse says we are getting admitted (I knew we would be) and they still need that other lab. She tried and missed I said no more he needs his sleep. they have fluids running on the iv and Charlie was really dehydrated they also have antibiotics running just as a preventative. It is now 6 am Charlie is sleeping and our room on the 5th floor is FINALLY ready!!! Holy Cow was that a LONG night. It was by far our worst ER visit and we have had a few. 

The 5th Floor.

A breath of fresh air! After the night of no sleep and many many tests that we had being on the floor was just so great! We were greeted by a nurse that knew us and he was on top of making sure everyone was quiet and that we would not be disturbed so we could sleep! AMAZING! We were able to sleep with minimal interruptions until 1 pm. We had to wake up for some meds, vitals and rounds but other then that no one bothered us. During rounds the Dr said that Charlie probably has a virus and we will probably stay till Tuesday because that is how long it takes for the blood and urine cultures to come back. If they look good then we have the all clear to go home, if they don't I'm not really sure what the plan is. Charlie and I just hung out ate some food the nurse would come in for different meds or to change iv fluids or to give him his iv antibiotics. As far as hospital stays it was a pretty low key day. Charlie still had a slight fever but it was mostly gone and his cough is still roaring. Jeff and Natalie stopped by a little before dinner and Natalie just brought so much life to the room. My parents we coming back from my nephews event and stopped by to bring us dinner they they went on their way because they had other stuff to do. Jeff was going to stay the night at the hospital so he could work from hospital and I was going to go home with the girls and SLEEP. Natalie and I head home after dinner and I'm so tired its hard to drive but I turned the ac on and kept myself awake for the hour drive home. we get home around 7:30 and Jeff's parents bring Willa back home so I don't have to do any extra driving. 

Home for Natalie, Willa and me.

I was happy to be home and to finally be able to get some good sleep. I put the girls to bed (Willa still has a fever). and wait for my meds before I climb into bed. I'm finally ready to go to bed, Hank our dog has been let out one last time before going to bed and I think the girls are are sleeping Hank is good to go and we are golden for sleep... I'm asleep before 10. 11:15 comes rolling around and Natalie wakes up screaming in pain. her ear hurts I tell her there isn't much I can do tonight and I get her back to sleep in my bed. Then Willa wakes up and her fever is back tenfold and she comes into bed with me. Mind you I am so tired dealing with the girls is a difficult task for me. Anyways both girls take turns waking up all night and I finally remember that we have Tylenol and go get some for Natalie and she slept the rest of the night after 4 am. Willa not so much, she wanted to sleep on my face. I was not a fan. 6:30 came around and I knew I had to get Natalie up for school. I didn't want to move. I get her up get her dressed make her breakfast and get her out the door and on the bus by 7:30 I'm so excited she is gone for the day because I need more rest. I send her teacher an email saying Natalie was up part of the night and her ears hurt but she doesn't have a temp so I'm sending her to school and I can come pick her up if I need to. Her amazing teacher responds and says sounds good! then asks if I want the school nurse to look in her ears to see if I need to bring her in later. I tell her that would be wonderful! I climb back into bed with Willa and amazingly enough she and I both sleep till 9 am when my alarm went off for my meds. I had an email from the school nurse saying that she had looked in Natalie's ears and there was fluid behind both ears so I do the mom thing and make appointments for both girls to have their ears checked out at the Dr's office after school. Mean while we get up and have a very slow morning meds, breakfast, movie, play, get dressed, lunch and a nap for Willa. While Willa naps I shower and get packed for Willa and I both. Jeff has to be at work on Tuesday due to a full day of meetings that he can't miss, so I have arranged for Willa to stay at my parents as I cant have her at the hospital with me because she is sick and Jeff has to go to work. I'm finally done getting everything ready for both Willa and I and its time to go get miss Natalie from school. I pack up the truck and have hank outside so he can go to the bathroom before we leave, then I get Willa (she was still sleeping) and off we go to pick up Natalie from school. she was in a really good mood as I had brought her tablet with that had been put away for almost a week. we get to the clinic they look in both girls ears and tell me they both have double ear infections! Yuck and Yuck! No fun at all. We get their meds and head to my parents to drop off Willa. On the way Jeff tells me Charlie is sleeping so to leave Natalie at my parents. I tell Natalie and she starts crying a lot. She wants to see Charlie then she starts crying because she cant sleep over at grandmas with Willa. I tell her that she gets to have a sleep over with Daddy at home... That didn't really help her; she was really upset that everyone was sleeping in different places. Once we were at my parents she was singing a different tune. To tell you the truth Charlie being in the hospital affects everyone in our family even our dog and we are often sleeping in all different places. 

Same Night and Day but at the Hospital with Jeff and Charlie.

 This is not Jeff telling this so I could be missing some things. I just know what Jeff told me. 

Jeff said it was a long night as the night nurse was not very quiet (that happens sometimes) and for as many times as they came in to check things on charlie and what not they never checked his diaper. some time in the night they woke up Jeff because Charlie was soaking wet and needed new everything. Not something you want to wake up to especially when Charlie is being pumped full of IV fluid meaning that yes he will in fact pee more during the night. They get him all cleaned up and back to sleep. Labs we supposed to show up at 5:30 am 30 min before Charlie's VERY important meds. Labs were late and the nurse decided to hold Charlie's 6 am don't ever be late meds. Labs finally showed up and Charlie got his meds late... So not ok. I think they went back to sleep but I'm not sure. I would have though. When the Dr rounded Jeff talked about the meds being late and no one checking Charlies diaper over night even though they were bugging him all night. The Dr said they were sorry and she will talk to the nurses. They also decided during rounds to order a full virus panel and another nose swab this time for virus'... More not fun stuff for Charlie. The boys hang out all day and I get to the hospital just as Charlie is getting his dinner. He was so happy and goofy acting it was awesome. Before Jeff left to go get Natalie then go home he told me that Charlie's IV had stopped working and that he needed a new one. About 20-30 min after Jeff left they came and put in a new IV. One poke, great nurses helping and Child Family Life specialist there to help distract Charlie with an iPad full of fun kid games. Where were all these amazing people when we were in the ER the first night? Sleeping I'm sure. Charlie's fever is gone and he still has quite the cough. As of right now the plan is to go home tomorrow (Tuesday). They should know what he has and be able to send home meds if they need to for his specific illness.  

That is this hospital stay

Later this week on Tuesday night Natalie will be playing basketball in the high school girls basketball half time. Wednesday Charlie needs to come back to the U to meet with his Dr for an every other month follow up, Jeff wont be able to make it this time (lots of meetings). On Thursday I have a Day full of appointments for me and baby Theo and Charlie and Willa will be hanging out with Grandpa Hoeft. They are planning on inducing me on February 23rd the day before Willa's 2nd birthday. I am in the final count down with this LAST pregnancy of mine. YAY!!

Thanks for reading my long blog. I'm sorry if I'm rambling or repeating myself I have been typing this at the hospital and there are a lot of interruptions. I also don't have anyone to proof read this so just put all the mistakes into a very sleep deprived pregnant mom. 

Life After Transplant

I have had quite a few people indicate that they thought transplant is a cure. I would like to spend some time to let you all know what day to day life is like for us right now. 

I would like to start out by saying that a transplant is not a cure its just a really good life saving band-aid but it is not a cure.  It is also not permanent when Charlie got one of Jeff's kidneys we were told that Jeff and Charlie were such a good match that if we do a good job taking care of Charlie's kidney it could last 35 years. That is a really long time for a transplanted organ to last and we think that it is god watching over Charlie that we were given those odds. With that being said there are many things that could put Charlie's kidney into rejection. His medications are balanced carefully to make sure he has the right therapeutic dose of meds. Currently that is monitored through monthly lab draws that means he gets poked in the arm and they take a few vials of blood. Since he has gone down to once a month lab draws he gets upset when we talk about labs. He is a brave little boy and does an amazing job getting poked but that doesn't mean he doesn't fight back a little. They would like urine samples but Charlie isn't potty trained so that means either bagging him till he pees (Not fun for him at all) or he has to have a catheter put in to collect urine (even more not fun). This is the first time since Charlie first got sick that he has had labs this far apart. he is also down to seeing his amazing Dr. every few months. also very strange for us as we were seeing her every month for about 2 years now.

Charlie currently has to have meds 5 times a day. His one anti rejection medication has to be taken every 8 hours with in 10 min of the time he needs to have the dose, he has that med at 6 am, 2 pm, and 10 pm. Then his next med he also needs 3 times a day, 8 am, 2 pm, and 8 pm at the 8 am time we have a few meds that he takes. All the meds are liquid and taken orally, then he needs to drink at least 40 ounces of fluid a day to keep his kidney happy and healthy (that can be a challenge some days with a little kid). He does a great taking the meds but when we add a new one he gets really upset. We also have a blood pressure machine at home so we can take Charlies blood pressure a few times a week. 

The meds that help his body to not reject his kidney also cause his body's immune system to be weakened. So if charlie gets sick it is much harder for him to fight it off. It also means that there is a possibility his body could decide during whatever sickness to recognize his kidney as an object that doesn't belong and cause him to go into rejection. If Charlie has a fever over 101.2 that is automatic labs. If he has the fever with other symptoms that could mean a trip downtown to the hospital for and Emergency Department visit and possibly a hospital stay. All of this will always be a part of our lives. Charlie will never have a life free of meds, labs, potential hospital stays fear of going into rejection (although right now he doesn't really understand that he could ever go into rejection) this is his normal, our normal. 

For over a year now charlie has had and been fighting Epsom Barr Virus ( EBV) it is a form of mono. To be able to fight it he is on a lower dose of anti rejection meds to give his body a little extra fighting power. With that comes a few different risks. On one hand the lower anti rejection meds could cause his kidney to go into rejection. It also makes it so he can fight off smaller illnesses. On the other hand prolonged elevated numbers of EBV can cause Lymphoma in transplant patients. At Charlie's last appointment with his nephrologist (kidney dr) I had Jeff ask if we could have Charlie go back on to the normal dose of medications. To that Charlie's Dr said she would rather risk Charlie going into rejection then him getting cancer. All of this is hard on Jeff and I. 

One of our fears that we may not talk about often is that Willa or the new baby will get the same kidney disease that Charlie had/has Diffuse Masangial Sclerosis ( Natalie is to old to get it). It is a very rare disease that shows up before you are 3 years old. It is also said to be genetic. So we watch Willa a lot and ask each other do her eyes look swollen? How about her feet? Could they be a little bit swollen? 

Needless to say Kidney disease is still very real in our house and if we know you are sick we will probably avoid you and if we are sick we will probably stay home a lot more often as to not spread germs. Charlie has had his vaccines up till his 2 year shots and now for the rest of his life he can never get a live vaccine. He depends on the herd to keep him healthy. We are aware that we can't protect him from everything (even though we may want to) but when we can we do what we can to keep him healthy.