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.