September 10 - Hospital Stay Day 1 - Infusion #45

September 10 - Hospital Stay Day 1 - Infusion #45

On the way to closing I received a phone call from DHMC getting Levi pre-registered for his admittance. I was asked what time we could get there and told that a room would be all ready for him at 6:00 and where to go to finish the registration process.

As soon as closing was over I rushed back to somedays house to pick up Levi, Grammie, and Grampa. We switched car seats and movies and got packed and where headed out by 3:30. Plenty of time to get to DHMC by 6. The drive went pretty smoothly.

We made it to the hospital by 5:40. We stopped in the bathroom and I noticed that Levi's underwear had a big red streak in them. This definitely concerned me as low counts can start internal bleeding and I knew that we were very low at this point. Then we went in to registration to get Levi all set. The lady at registration says "I am closing soon you will have to go to the Emergency Room to register". Seriously?! You are open until 6:00 and you are turning us down 10 minutes before closing. But we headed down to the Emergency room to register. I explained to the very nice receptionist what was going on and she went ahead and got him registered and then told us to take a seat and wait for a triage nurse. I then very nicely explained again that we didn't need the ER at all, that we just needed to register to go upstairs and that we already had a room up there. She apologized that she misunderstood, cut the bracelet off of Levi's arm, got us registered correctly and put a new bracelet on.

At this point it was slightly after 6 when we headed upstairs. I thought perfect timing, we will get right into the room. It was also 9+ hours after Dr. K had first contacted us with Levi's low count and wanted us to come to the hospital so I figured things would get started right away and that they wouldn't want us to wait around at all. Boy was I wrong. We got upstairs and they said our room wasn't ready yet, it just needed to be cleaned and would only be a few minutes. They sent us out of the kid wing and down the hall to a waiting room with a TV and a puzzle. I was a little confused why we couldn't just play in the playroom but since it was only going to be a few minutes I let it go. 45 minutes later we decided to send Grampa to David's House to get checked in before it became too late. I also went to check on things and the receptionist said "I haven't forgotten about you, they are just cleaning it now." Another 30 minutes later we finally got brought into Levi's room.

Once he was in the room the initial things happened quite quickly. Nurses came in to get vital signs, we headed down the hall to get height and weight and the children's ward doctors came in to ask him questions and start getting information. The nurse brought in some cream to put on his port. It was a different kind then we usually use and I mentioned to the nurse that we don't use that kind generally and how she applied it is not how we do it and she said it was fine. She went to put a tagaderm sticker over it and I reminded her that Levi is allergic to tagaderm and she said "oh right" like it was an inconvenience and I told her that we use IV3000 for everything. She said "oh we don't have those up here, I will find something" and came back with a piece of cotton and taped it over the cream. I was concerned it was just going to soak up the tiny amount of cream she had put on, but I went with it.

Then we set around to wait. I asked about dinner for Levi and the nurse said "oh the kitchen closes at 7, you can go buy food" again really?! You kept a young child waiting for 90+ minutes and now aren't feeding him. Thankfully at this point Grampa came back from David's House after having checked in and the ladies over there absolutely adore Levi and our family and they sent over Pizza for everyone and a blue elephant for Levi.

Levi eating some pizza with his new blue elephant.

 We found a movie and settled in to wait for the IV team to come up and access Levi's port. Until his port is accessed nothing else can be done so we just kinda chilled. Finally the IV team came up. I explained to them what we do to access the port and what size needle we use and the guy really wanted nothing to do with my information. I then explained that we can't use tagaderm and he seemed annoyed, but he found something else. We took off Levi's shirt and got things started. When they peeled off the gauze pad I saw that the skin was not white at all, and I mentioned this and they said "It's a different cream, it's fine" again I let it go and shouldn't have. The IV guy started doing the proper procedure for access and it was a complete failure. Levi screamed bloody murder! There was no way it was numb at all and then the guy supposedly got it in as Levi is screaming and kicking and couldn't push or pull from it so he had to pull it out. Levi was crying and clung to me. It was awful to see him in so much pain and knowing that we had to do it all again.

We finally got him calmed down and watching his movie again. The nurse came in with the cream we usually use and a big band-aid and was going to put it on again. Levi grabbed the hem of his shirt and refused to let anyone near him. I finally got him to let me put it on and I heaped it on. And then we cuddled and watched Puppy Dog Pals together!

 About 45 minutes later another IV team member came up. I explained to him the whole thing again about what we use. Again he thought I was crazy and there was no way that is what we needed. From the second he walked in the room Levi was upset and agitated and just wanted him to leave. When it came time to take his shirt off he screamed and started kicking. After getting it off he wanted nothing to do with anything and I had to physically restrain him for the IV team to do his work. I hate having to do that, but there was no other option. Thankfully his port was completely white this time and the needle went in correctly and worked without any problems. The IV Tech dressed the needle and I tried to explain to him that we needed several dressings on it as Levi knows how to pop them out, but he wasn't listening at all.

Then we got Levi calmed down again with a popsicle and a movie. At this point the poor guy was exhausted. It was close to 10pm when his normal bedtime is 8:30. The nurse brought in the benadryl and tylenol to get the process started and then brought in his bedtime meds. Which should have just been melatonin, vitamin D, and Ranitidine, but she brought in the Synthroid too, thankfully I don't allow the to give him anything without telling me exactly what it is and I was able to stop them from giving him a second dose for the day.

 At this point we turned off the lights and put on a quiet movie to try to get Levi to settle in for the night. He was excited that monkey and piglet had found there way to the hospital and that his hospital pillow had a special green pillow case on it. Then he had also brought bear and huggie with him and of course his new blue elephant.

 It didn't take a ton of time for him to go down but within 30 minutes or so he was out cold. Levi's infusion finally started at 11pm, 14+ hours after Dr. K had contacted us with his count of 3. It's been a long and crazy day. Once he was asleep Grammie and Grampa quietly snuck out to get some sleep at David's House and I settled in for a nap here and there.

The infusion went fairly smoothly. Levi started sweating around midnight and was a puddle of sweat in his bed, but there was no fever so the nurses let it go. He slept through the infusion which was nice. After the infusion they started him on constant fluids since he wasn't eating or drinking much and his counts were so low. After that he slept ok until they wanted to run vitals at any point. The second they would try to get his temp he would just scream out in pain and yell for Mommy and yell No No No. Thankfully as soon as they would get it he would settle right back down and be asleep again within a minute. It was a long night, but he slept and that's what matters. Hopefully the morning brings a better day.

September 10 - Blood Work

September 10 - Blood Work

NOTE: I know that I am really late on making these posts, but the next few that will come after this blood work post have been difficult to write and I have put them off. The events that happened made me really mad and I had a hard time putting it into words, so I just didn't. I am now getting everything caught up and filling everyone in on the events of the last month. I hope you can all understand my lateness and enjoy reading about the last month and a half of Levi's adventures.


Well today is the day!!! Today we close on our house. Levi is super stoked! His counts were at 190 on Thursday so we aren't at all worried about any problems. He has picked up some sort of a little bug, but hopefully he won't be too affected by it. He had a headache on Saturday after we got home from Story Land and then was pretty cuddly on Sunday and voluntarily took a nap, but he also had moments of being a crazy man so I wasn't too concerned.

We got to the lab and all was good. He went running in and picked out his band-aid and climbed up to play on the tablet. He looked a little pale in the bright lights of the lab, but he told me he felt fine and was excited to go to school.

 The draw went good as always. His arm didn't want to stop bleeding which is usually not a good sign, but I kinda shook it off. Levi headed to the treasure box and suddenly got very gray colored. I was actually a little concerned that he might puke in the treasure box and had him turn away for a minute, but than he spiked back up and I thought all was good. He picked out a truck from the treasure box and got a sticker. Then he gave hugs to P and we were off to the car.

I was a little concerned about him at that point and told him that he should stay home with Mommy instead of going to school. He insisted that he was fine and that he was going to go to school. Against my better thought I drove that way assuming that either he would change his mind or we could talk it out. We got to school (a 15 minute drive from the hospital) and I parked. I looked back and he looked very very gray but was still insisting that he could go to school. It was seconds after he insisted, that he puked everywhere. At that point I got on the phone to Jay to discuss our options. I had a doctors appointment that I had to be at and we had closing at 1:00. I was on the phone when Levi got very insistent that he had to go potty. I rushed off to McDonald's the closest place with a public bathroom. We got inside and Levi was using the potty when my phone rang. At this point we couldn't have been away from the hospital for more then 25 minutes and it was DHMC. That is not a good sign! I picked up the phone and with barely a hello Dr. K says, "Levi's count is at 3. I have no idea what happened but you need to get here now. Plan on staying a few days and we will figure out what to do over night after you are here." Once she paused I explained about our closing and asked if there was anything we could do to push off this by 5 hours. That I would rush up as soon as I had signed on the papers. She wasn't overly excited but agreed that as long as we took him home away from all people and kept him very calm that we could get admitted tonight and go from there.

At this point I was in shock. Levi had been at 190 and dropped to 3! 3!! We have never ever had a number that low. The lowest previously was 6! I called my parents to ask for their help and they came rushing down to watch him while I went to closing and then to go to DHMC with me. It was an absolutely crazy morning. Not at all what I was expecting.

The most heart breaking part of the day was that when Jay picked up Levi at McDonalds so that I could rush to my doctors appointment and Levi could get home to only our germs and family we had to tell him that Mommy and Daddy would buy our new house today but that he wouldn't get to go see it because we had to go to the hospital. He looked up at me with the saddest eyes and said "I know. It's my fault!" as much as to blame himself for being sick and understanding that in his life there are no guarantees. There is no getting excited about things because everything can get pulled out from underneath him. Just because he has a great number doesn't mean that he will the next time. He just had this look of sadness and dejection on his face. It was so heartbreaking. I wanted to scoop him up in a giant hug and make all his troubles go away!

September 6 - Blood Work

September 6 - Blood Work

Happy Thursday!! :) It's another great week! We got to the lab this morning and there was no waiting. Levi went running right in and picked out his band-aid. He picked out a pokemon band-aid and then asked me to look up who it was. He climbed up into P's chair and we snapped our pictures there.

 Then P brought over the tablet and Levi started playing connect 4. Then P started the blood draw. Close to the end of the draw Levi won connect 4 for the first time ever! He truly won!! He started cheering and was so so so excited! He jumped up and down and put his hands in the air! It was the absolute most amazing thing ever.

Then he was off to the treasure box. P had gone shopping since Tuesday and the treasure box was full! Levi was very excited when he took the cover off the box!! He dug around in there and ended up finding green finger rockets!! He was so excited. Then P helped him open them so that he didn't have to have the box anymore.

Since it was Thursday we were off to the donut lady. He walked over to give hugs and then was excited to see that there were several with sprinkles. And that the sprinkles had green ones!! I saw the sprinkles and was a little dismayed that they have gone to fall colored sprinkles. I am not ready for it to be fall yet!!

 Then we were off to the car to head to school!

Counts came in about 35 minutes later today which is great. We were a little concerned about what his counts would be today as he has several nasty bruises, but we were very excited to find out that counts today were 190!! Only a drop of 2!! Hopefully we will level out here in the high 100s for a bit again like we did last time and make it a few more weeks before we have to head up for an infusion.

Next Plan: Blood work again on Monday.

September 4 - Blog Post

September 4 - Blog Post

Happy Monday/Tuesday! Hope you all had a great long weekend. I know we did!!

We got to the lab this morning and there was one person ahead of us. It didn't take long for it to be Levi's turn but we had a second to snap a quick pic!

 He picked out a round PJ Masks band-aid and climbed up to open it. Once he opened it he saw that it was a round Shopkins band-aid instead. He laughed and laughed and thought it was hilarious that a shopkin got in with the PJ Masks. He was still happy about it since he loves the shopkins and it was the strawberry with a green background.

 Then he settled in to play games and wait for P. There was a little girl waiting with her Dad in AM's chair and she was really really scared. Levi laughed and giggled thru his blood work. P got everything done right away and easy as usual.

 Then Levi headed over to the treasure box. He looked at the little girl and told her it would be ok and that there were cool things in the treasure box for after. She didn't seem reassured, but the dad seemed appreciative. Levi picked a green phone and had fun playing with it.

Then we were off to school!

Counts didn't come in until 12:53 today after being at the lab at 8:25! It is very frustrating when that happens. Counts were 192. Another drop. Seems like we are well on our way to another infusion. 192 is still a great number, but the drop isn't fun. Hopefully we can hold out a little longer since we are finally supposed to close next week.

August 30 - Blood Work

August 30 - Blood Work

We got to the hospital today and P was back! Levi was so happy to see her. He ran in and picked out his band-aid and then was off to his chair.

 The draw went so quick and easy that he barely had time to load a game on the tablet let alone play the whole thing. Then he was off to the treasure box. He picked a green pick up truck and was super excited to make it run on the floor, but it would't go in it's package and for some reason he didn't ask me to open it.

 Then on the way to the donut lady he saw that his fountain was all boarded up. He was very sad and worried about it. He kept saying that he hoped it felt better and that they fixed it. I am not sure what they are doing to it, but I hope its fixing it and not removing it!

 Then we were off to the donut lady for a yummy donut! He was super excited this morning and full of energy.

Labs came in about 35 minutes later today. His count was 235! An 86 point drop in a week. Not great! But its still a great number so we will run with it.

Next Plan: Blood work again next Tuesday (since Monday is Labor day!) Hope everyone has a great long weekend!