August 2 - Inpatient Day 2

August 2 - Inpatient Day 2

The night started out as expected. I had just drifted off to sleep when beeps started going off. I assumed it was his pump line crimped again, but it wasn't. His IV bag had run out. The nurse came in and switched out the bag. He did vital check at that point as well since it was 11:30 and vitals were due at midnight! Wow! A nurse who combines visits! It was nice.

Around 1:30 Levi's O2 sensor kept going off for heart rate declines. I got up and set by his bedside for awhile. As he seemed to be breathing fine I assumed it was the sensor and tried moving his foot and legs and making sure it was on his toe well still. The nurse came in and said that he has been monitoring it from the nurses station and had already called the doctor who had agreed to reduce the alarm limit and they thought he was probably just in a deep sleep and the sensor wasn't picking everything up. But the doctor would be in himself to do a manual check. A few minutes later the doctor came in to do the check. How he didn't wake up Levi I have no idea. Unlike the Nurse who has been sneaking in and trying not to wake up anyone, the doctor just burst in the door, lights on, loud talking, it was kinda nuts. He said his pulse and heart rate were fine manually and agreed it was probably a sensor issue.

I attempted to get back to sleep again. Around 3:00 the Nurse was back in to give Levi another dose of antibiotics. Since we still don't know what caused any of this we are still on large dose strong broad spectrum antibiotics. He did great at putting the antibiotics in through the pump.

Around 3:30 he was back for the next set of vitals. This didn't go as well. Although he tried very hard not to wake up Levi he had to roll him because he couldn't get to an arm for blood pressure. Between rolling him and the super loud velcro noise of a blood pressure cuff Levi was awake. After the nurse left I set with him for quite awhile rubbing his back and trying to get him back down. He wasn't really having any of that, so I climbed in bed with him and we cuddled for 2 hours. Levi fell back asleep only a minute or two after I was in bed with him.

Around 6:00 I got out of Levi's bed and moved back to my chair to get another hour or so of sleep. Levi barely even stirred. Around 6:30 the nurse came in to take blood work and to ask what time Levi needed his morning medication. I had no idea he was in the room until he was talking to mom to ask the question. I didn't even know he had taken blood, another amazing power of a port.

Around 7:00 Levi was awake. We got his meds during shift change and ordered breakfast. He seemed more himself this morning. He asked for food and his tablet. His color was more normal and he was much more talkative.

 Breakfast came and he was still not eating much. He ate a piece of bacon and a little bit of fruit, but really not much for him.

 He was back to being a little silly though!

 After breakfast we noticed he was definitely more himself. He was giving us a run for our money with trying to keep him not tangled in his lines, he was spinning around, jumping up and down, pushing every button in site, much more a typical 3 year old!

We were waiting for blood work to come back. If his platelet count had continued to fall we would be needing another infusion today and probably staying longer. If the blood culture came back with a specific infection we would be staying for more specific antibiotics and making sure the infection leaves his systems.

Dr. C came in during rounds with his labs. His white blood cells were back in the normal range and his platelet count had risen to 111! Not a great rise almost 24 hours post infusion at this point, but a rise none the less. We talked to Dr. C for a few minutes about her thoughts. She said they still don't know what caused anything but that her and Dr. V had discussed things and at this point they do not want to do another infusion. We need to redo blood work at home on Thursday and see what it's doing, but that the infusion (even with reaction) should be working and we need to let his body do its thing.

That's great news!! We are going home!! Of course we probably still have several hours before actually getting out of here, but at least we know that we are going home today! The nurse came in and deaccessed Levi! That was great! He was finally able to roam and explore and that was muchly needed by everyone! The first thing he did was play with spaceman!

 Dr. C came back in and told us that they had heard from the blood bank and it was definitely an infusion reaction. They are furthering the cultures to 7 days but believe it to be an antibody reaction. Levi can no longer receive A positive plasma as a precaution. This limits our available blood options, and although good to be safe, it makes it all the more necessary that people continue to donate!

The paperwork was started for Levi to get out of here so we got him dressed and he kept on exploring! Playing with the bed, standing with spaceman, and playing cars. This is definitely my little boy back!

We signed the last form and got released at 11:15am! We are outta here!! We got to the car and I asked Levi if he wanted lunch! He said "Yes"! And then I asked if he wanted to go to McDonald's and he said "Yes! I want Chicken Nuggets and French Fries and Chocolate Milk!" Yup!! That's my boy!!! I am so glad he is himself again!! 

It was a very scary ordeal and I am so glad that I had my mom by my side to help me get thru it. I am glad that Levi is doing better! Now I just need his platelets to increase so that we can avoid another infusion right away. I think I am going to be back in paranoid mode for a little while. I had let my guard down to much with things and it needs to get back up. Back to having extra clothes and things in the car, back to checking things multiple times, back to being on edge! But for today I am lucky to be taking my little boy home after just 24 hours in the hospital. It's been 18 months since we were inpatient last time. Hopefully we can go at least that long again! 

August 1 - Inpatient Day 1

August 1 - Inpatient Day 1

We started the drive home expecting all to go smoothly. Grammie and I were talking about how smooth the day had gone and how early we were going to get home. We got out to the highway and Levi complained about being cold. We both looked at each other and determined that we both had on sweatshirts so maybe he was cold! We turned down the AC. A few minutes further down the road Levi started not breathing very well. He was gasping some, very throaty, very loud. We kept having him talk to us and were talking about how his minor runny nose must be getting worse. A few minutes later he said his neck hurt. I thought this was strange but we asked if his car seat straps were rubbing on it and we fixed his shirt to be a blocker between his straps and his neck. At this point Mom and I were both keeping a closer eye on him. It wasn't long after this that his skin started to get very marbled, his breathing was getting worse, and he seemed like he was going in and out of consciousness. We got him to talk to us and tell us that he wasn't feeling well so I pulled off at the next exit.

I got stopped at the exit and pulled him out of his car seat. I held him for a minute and then he curled up in the fetal position in the seat next to his car seat. He was shaking uncontrollably at this point. He just started yelling "it hurts, it hurts" we tried to get him to tell us what was hurting. When I got him to roll over he told me that his mouth hurt. When I looked at his tongue it looked a little weird but nothing crazy. I set him back in his car seat as a place of comfort for him and to keep him contained. I was trying to calm him down when he vomited everywhere. I leaned him forward and he vomited again. He was shaking and upset. We tried to get him calmed down and cleaned up. At this point we made the call that he definitely needed to be back at clinic. I called Dr. V's office and got S, who still hates us, and of course she wouldn't put me through to Dr. V or any nurse in clinic. I got a nurse from upstairs who couldn't tell you who Levi was from a million other kids. I was so angry. I hate how this women who knows nothing about our children can determine when and if we get to talk to their doctor, it's just not right! We got Levi cleaned up and in other clothes. Then he just wanted to be held and cuddled. I did the hardest thing at that point which was to look at him and tell him that I loved him but I had to strap him in his car seat so we could drive back to Dr. V. He looked at me with the saddest eyes and said "I'm fine Mommy. I don't need to go back!" It about broke my heart.

At that point we got him buckled in and took off for the hospital. He seemed a little calmer and his drifting in and out seemed a little more like sleep then it had before, but he was so pale and was shaking with cold but was burning up. As I was getting on the highway I looked at my Mom and said "Mom, I'm just letting you know I'm going to speed!" she looked back at me and instead of saying "No, don't do that" or "don't break the law" or "Michelle we don't do that" or any number of the other lines I've heard in my lifetime, she looked at me with the mom eyes and simply said "Be safe!" That's the point that I knew for sure that I wasn't the only one who was scared, that I wasn't making a bigger deal of this in my head, that we really were dealing with a very serious situation! I put my flashers on, got in the fast lane, and just went for it. I don't know how fast I made the drive but it was fast. Thankfully the highway was fairly empty, and the few people who were out got out of our way, except for one idiot, I still don't know what his problem was, but he tried to run us off the road and swore at us! He took off faster then I was going and we never caught up to him thankfully. As we were getting off the highway we talked about what needed to be grabbed from the car so we were both ready to jump out as soon as we could.

We arrived at the hospital. As I pulled into the parking garage I saw an empty spot on the first floor and I took it. We jumped out of the car. I pulled Levi out of his car seat, Mom grabbed the diaper bag and spidey bear and we took off. We didn't quite run, but close. Levi was burning up and so out of it laying on me. He kept acting like he was going to vomit again and I just tried to keep him calm and told him to just let it out if he needed too (thankfully he didn't).

We got to clinic and Dr. V and Nurse T were on us the second we got in there. We explained what had happened to Dr. V and he listened to Levi. He said his lungs were clear. He felt his forehead and said "he doesn't feel that hot, but touch is never a great indicator". He seemed very calm and sorta like we were over reacting. We headed into the vitals room and there is where things got serious and I saw Dr. V's reaction and attitude change very quickly. When we had left clinic just over an hour ago Levi's temperature was 98.6, when they took it now, three times mind you, his Fever was now 102.9!

We were rushed back into the Jungle room where Levi had to get accessed. I hadn't even thought about this but of course he would need to be. His EMLA or numbing cream had long ago worn off. They used the freeze spray on him but he screamed that it hurt. Nurse T and Nurse S seemed a little like "it doesn't hurt buddy" and then I was like "I bet it does, he was accessed an hour ago, he has an open cut there, I bet it stings!" We only used the spray a little and then just went for it. Levi screamed! I am sure that had to hurt, that was a giant needle going in to his chest! I am so sorry sweetie. If I had thought I would have thrown cream on his port before the speedy drive. As soon as he was accessed and taped they started pushing fluids. I have never heard the pump make that much noise they were pushing them fast. All Levi wanted to do was curl up on me and I let him. He wanted a warm blanket and we got him one. He curled up on me and was out of it. I was boiling underneath him, between his heat and the warm blanket, but in that moment I didn't care, all that mattered was holding him and telling him how much I cared about him.

It was only minutes before they had a high dose of Tylenol for him. I gave him that and we settled in to wait. They took his temperature every few minutes to see what was going on, as well as looking at his skin, pulse, blood pressure, and O2. His heart was racing along with his temperature being elevated.

Dr. V came in to start talking about possibilities with us. He also mentioned how he was supposed to be leaving, but of course would be staying for a little while to monitor and make decisions and then after that Dr. C would be taking over. At this point there was no known reason for what caused this. They pulled the infusion reaction kit and did the blood work and urine sample for that so that everything could be tested. They started Levi on a large strong dose of a broad spectrum antibiotic as a precaution and told us that we would be spending the night at least for observation. Dr. C came in to take a look at Levi herself as well.

About 30 minutes after the tylenol Levi's fever broke and he started sweating like crazy. At this point he woke up and was still very cuddly but was a little more himself. Levi and I called Jay to tell him what was going on, while Grammie contacted other family members. Jay was worried about Levi but knew that he was in the best place possible.

Levi waving "Hi" to Daddy!

Nurse S asked Levi if he wanted a drink and started listing off every option they had. He wasn't responding to any of them and then she said "I might be able to find you a Popsicle" and that was the winner! He ended up eating 2 Popsicle's and getting a little more alert.

Popsicle Number 1 on Mommy

Popsicle Number 2 in the chair by himself. 

After the second Popsicle we got a movie started for Levi to keep him calm. He picked Mickey Mouse Clubhouse.

 After a little bit they had a room for us upstairs and it was time to move up there. Levi got a ride in style from Nurse A and of course Spidey Bear got to go for a ride too.

 Once we got upstairs it was a flurry of activity for a little bit. We got in the room and nurses and doctors and residents and medical students came flooding in, all wanting to discuss Levi's condition, his chart, what happened, take new vitals, new height and weight, new everything. It was as if we hadn't been downstairs half the day already. It always cracks me up when they do that. You know all the information is in the chart but they want to get it all themselves. While discussing Levi's entire medical history with a resident Dr. C came by with the labs that had been taken downstairs. Levi's platelet count had dropped to 100. Not good! Also his white blood cells were nearly non-existent as well as several other crazy numbers that were different from 9:30 when they had taken them pre infusion. At this point Dr. C had no idea what could have caused this and was definitely very sure in her decision to keep us overnight.

Levi had short bouts of being himself and would make lots of noise and play with cars, but had very long bouts of just being lethargic and laying around. We watched a lot of TV.

 During the initial hub bub of everyone coming in, two nurses also showed up with a space man for Levi to have! He was very excited to have space man in his room all night!

 Levi said he was hungry so we got him another Popsicle while waiting for his dinner to be brought up from the cafe and the delivery from outside to be delivered as well (Thanks again for dinner Martha, it made our night much less stressful!) Levi didn't eat much of anything. He ate his whole Popsicle and most of his fruit cup, but next to no hot dog. He just held his hot dog and zoned out. He was very much not himself. At this point he hadn't really eaten a meal since breakfast at 8am.

 After shift change and meeting the new doctors and nurses it was getting closer to bed time. We got the room set up to hold two adults (the rooms are only initially set up for one adult to stay). Then we got Levi's Melatonin and started settling him down. The doctors had ordered for his IV to continue all night to make sure his fluids were increased as well as to keep his O2 and heart rate sensor on his toe all night. This could definitely be a long night with him wiggling all night and tying up his lines. Once we turned off Blaze and the lights it was only a few minutes before Levi was asleep. He is a tired little thing who is definitely not himself still.

I headed to the parking garage to move the car while Grammie stayed in the room with sleeping Levi. Of course just a few minutes after I left his pump started going off, Levi was laying on his IV line and causing it to not work properly. The nurse and Grammie got Levi moved enough so that he wasn't on his line anymore and he stayed asleep.

Once I got back to the room we settled in for what we expected to be a long night filled with very little sleep. Good night all!

August 1 - Infusion #31

August 1 - Infusion #31

We got to the hospital and Levi insisted on parking on Purple so up we went. (Really why can't purple be a lower floor?!) We got parked and headed into the hospital. Clinic was very very quiet and we didn't have any waiting all day. As soon as we got back there they took Levi right into the vitals room and got his vitals taken. He did a great job sitting still and we got blood pressure on the first try! Nurse T was on top of finding him the movies he wanted and he didn't even want to go to the playroom to play he just wanted to settle in for a movie. So that's what we did. He wanted juice and a snack and was angry that they didn't have any cookies.

His port access went great as per usual and it was only moments before his Bennadryl was started. Then we settled in to watch McQueen.

 Dr. V came in to visit with us and we talked for a few minutes. Everything was looking good. Levi had no real bruises or issues. He checked out great and we talked about Levi starting preschool. Levi and Dr. V had there normal conversation about the movie and we settled in. Levi's plasma came up soon and that was started.

 Nurse S (who was technically assigned to Levi but Nurse T was accompanying her for most things as when we had first gotten to clinic Nurse T had asked Levi if it was okay if Nurse S helped him today and he said no!) wasn't very happy that Levi was playing with the wheel on his line. He isn't strong enough/doesn't know how to close the line he just likes to play with it and make it drive up and down so we have never stopped him before, but she was very unimpressed by that. So she brought him in his very own tube line that he could play with. Although this was a great toy it also caused several minor heart attacks as people would come in and see him playing with his tube and yanking on it only to realize it wasn't the one attached to him!

After McQueen was over Levi wanted to go to the playroom so off we went. He did a really good job listening to Grammie and my words and there were only a few times that we had to stop him from running. We had a great little band going for awhile. Levi was on the drums, I was on the blocks, and Grammie had the xylophone. It was loud but Levi was smiling and happy. We also played with the planes, the cars, the puzzles, and the baby toys. We spent about 40 minutes in the playroom before heading back to the room.

Once we were back in the room we started Planes for Levi and I tried to get him to eat but he didn't want anything. He had barely touched his gold fish, though he was on juice number 4 (of 5 for the day) so I wasn't going to push the issue, I figured we would stop on the way home.

The infusion rapped up. The bag was bigger then Levi needed so we didn't have to flush the line so that helped (for some reason that always seems to take forever even though its going at the same speed). Levi was deaccessed and we headed out. He didn't ask to go to the playroom for his 5 minutes of free play, so we just walked out. He put his key in the box and we were headed home. It was only 12:30! We were going to be home early!

I asked Levi what he wanted to do for lunch. I said we could go to the cafe, we could go to subway at exit 15 (i think) or we could go to McDonald's at exit 9. He just screamed that he didn't wan't food, and wasn't hungry, and he just wanted to go home. (Hind site being 20/20 this should have been our first clue that our day wasn't going to go as expected, but it wasn't!)

So we headed to the car to head home. I hoped he would fall asleep and wake up happier and ready for some lunch and some play!!

July 31 - August 1 - David's House

July 31 - August 1 - David's House

I picked Levi up from his first day of Preschool and we were off to David's House, after stopping to get Grammie. The plan was to stop at exit 9 for McDonald's but Mr. Levi didn't nap at school today and instead fell asleep in the car. Since he isn't a kid who will sleep through the car stopping we rolled on by and let him sleep.

We arrived at David's House and they gave Levi the pick of rooms. He of course picked the space room, it's his favorite! We went upstairs to get settled into our room and then headed down to the kitchen to check on dinner. There was nothing there that everyone would eat so we decided to order pizza. Levi and Grammie read the space book while I ordered the pizza.

 Then we headed outside to play and wait for the pizza to be delivered. Levi loves this little tricycle. He is WAY too big for it, and often ends up just walking with it, but it's a favorite of his to play with.

He said he needed a break!

 Once the pizza arrived we headed in to eat in the ice cream room of course! Levi did a pretty good job eating.

 Then we headed downstairs to play. Levi and Grammie had a great time with the "wooden" blocks. Grammie made some large towers and Levi had a blast sliding into them to knock them over.

 We did some cleaning up and reorganizing downstairs since Levi knows where everything goes and there had clearly been several kids in the playroom today. We played blocks and magnets and made some artwork.

Then it was time to head up to bed. Levi picked out his two bedtime stories and we headed upstairs. PJ time and then story time!

 I am so proud of this little guy. For the first time ever he was in undies at David's House and for the whole drive up (usually we switch him into a pull up) and he had no accidents!! He is getting so big!

Grammie and I headed to the hallway to relax and wait for Levi to fall asleep. A process that took a LONG time! Since we were at the end of the hallway the motion sensored light kept turning off on us. Grammie got a good arm work out in waving her book in the air every 5 minutes to get the light to come back on! Especially since it took almost 45 minutes for Levi to fall asleep. He fights sleep so badly!

The next morning Levi was awake around 6:30. He played on his tablet for a little while and then we all get dressed and headed downstairs for breakfast. After breakfast we played at the train table and with the cars and lego's for a few before heading upstairs to put on button cream, pack up and head out. Grammie and Levi got in one more page in the space book while I was packing everything up.

Then we were off to the hospital. Thanks again for everything David's House we are so glad that we can have a home away from home! See you in 3 weeks!

July 31 - First Day of Preschool

July 31 - First Day of Preschool

Levi started Preschool today!!!! How is he getting so big?!?!

The morning was a little rocky. He didn't want to get dressed or have his picture taken. But once we got to school drop off went great. It was breakfast time so all was good in his little world. :)

Levi is now a dragonfly! I really hope this year goes well for him. He needs it after how awful last year was!