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!

August 23 - Blood Work

August 23 - Blood Work

We got to the lab today and Levi was in rare form. We stopped at his fountain for a second to say hi and then we were off to the lab.

 As we were walking over Levi asked me if P would be here. I said I didn't know but I assumed she would. He turned the corner and saw AM and in the safest voice ever he said "No P. It's just AM!" I felt so bad! But AM took it in stride knowing that they have a great relationship. She said that P was on vacation. There was a bit of a wait so Levi had a seat and continued to be a goofball.

 When it was Levi's turn he went running in to get his band-aid.

 Then he climbed up in the chair to wait. He was not amused that it takes AM a few extra minutes to do the paperwork then it takes P who has it down to a science at this point, I think she could probably fill out Levi's paperwork in her sleep.

 He finally smiled when she came over to get started.

 The draw didn't go so well. AM missed his vein and ended up having to stick him twice because she didn't want to dig around in his arm. Levi was not impressed and you could tell that AM felt awful. But Levi never cried. He did saw "ouch" and "Ow" a few times but he did really well. We stuck to our decision from years ago that it's one thing from the treasure box per stick, so Levi got to pick two things today.

 On the way out of the hospital he determined that he and his new green owl needed to sit on the bench and wait for a minute. Not sure what they were waiting for, but they set right down.

Eventually I got them moving and we headed off to school.

Counts came in around 9. Levi's count was 321! A great number and another increase! Woo Hoo!! Two weeks post infusion and we are still increasing!! That's always a great sign.

Next Plan: Due to Kids Day and then Levi's first day of Pre-K we will not be doing blood work again until Next Thursday. With his counts so good skipping one draw won't be a big deal and he needs to not miss special things if we can help it.

August 22 - Endocrinology

August 22 - Endocrinology

Today was Levi's endocrinology appointment. Sometimes with everything going on with his USS it's easy to forget that his thyroid doesn't work either. The morning meds he takes are such routine at this point I don't even think about them, just flavor them and hand them over. But every 6 months we make the drive to Manchester to meet with Dr. Cl to discuss how Levi is doing and check his counts. 

The drive down was awful. Horrible rain storms and could barely see, but we had left plenty of time as I wasn't sure how long the drive would be from some days house, so we still arrived early. We got all checked in and headed upstairs. 

Levi was a crazy man in the waiting room, but I got him to be good enough and was able to fill out his paperwork. For the last few Jay hasn't been coming as it's several hours in the car for a 20 minute appointment. It doesn't seem to make a lot of sense for us both to miss work for that. 

Levi got called and we headed in. He did a pretty good job doing height and weight and then we headed into the room. Levi climbed up on the table and played with the toys. 

 After a few minutes Dr. Cl came in and we discussed the last 6 months with him. Levi's TSH and Free T4 are elevated again, but since they are both elevated at the same rate and Levi is not showing any clinical signs of hypothyroidism we made the call not to change his meds at this point. We will do blood work again in November and possibly do an increase then.

Then we were outta there. Levi got 2 stickers on the way out and was super excited to share saying that one was his and one was mine. It was really cute!

We will be back in 6 months, and for now we are status quo! It's hard to believe that 4 years ago his thyroid is what kept me up at night and had me scared. Now it's just a little blip on the radar. It really is true that everyones 10 is different. When Levi was born his thyroid was our 10, now USS takes that by far and his thyroid falls to a 3 or 4 on the stress level. Just goes to show how much life changes.

August 20 - Blood Work

August 20 - Blood Work

Happy Monday! There was no line or waiting at the lab today and Levi was excited to go running right in. P had the tablet all set for him and he started playing before he had even opened his band-aid.

 The draw went quick and awesome as always and then Levi was off to the treasure box. It's always a little hard when there is a patient waiting at AM's station as Levi just goes running over there, but at this point no one has said anything to him, and have all just complimented him on how well he did, so hopefully that will keep up.

 He picked another fish tank today and asked if he could stop and fill it at the fountain. I said sure, it wouldn't hurt the fountain to have 2 tablespoons less water in it. So off we headed. Levi tried with all his might, but the fountain just wasn't deep enough for any water to get in to the fishtank. He was disappointed but managed it well.

Counts came in 30 minutes later today. His count was 304! Woo hoo! Still going up! And now over 300! Always nice to see that.

Next plan: Blood work again on Thursday.

August 16 - Blood Work

August 16 - Blood Work

As we were walking into the hospital today P was coming out. She was going home sick. :( Levi gave her a big hug and told her to feel better. We stopped at Levi's fountain to say hi!

 And then headed in to the lab. We knew that AM would be there. She apologized and said that P had just left.

Levi headed in to get his band-aid. Then we tried to get the tablet to work, but I swear that thing only ever wants to work for P, so Levi played on my phone instead. He colored this whole watermelon!

 AM did a great job with the draw. It was a super quick in and out! Was great. And Levi only give her a few dirty looks. He is starting to feel more comfortable with her, which is nice.

Then it was off to the treasure box.

 Then off to see the donut lady! He was super excited to give her hugs and to pick the donut with the most sprinkles on it.

Counts came in a little while later at 284. Another huge increase! It's so nice to watch his counts tick upwards instead of down.

Next Plan: Blood work again on Monday!

August 13 - Blood Work

August 13 - Blood Work

Happy Monday!! We got to the lab and there was a short wait so we got in a cute picture!

Then P told Levi to come in and he was checking out the new band-aids. P put them in different containers instead of just the boxes and Levi thought that was neat.

Then we climbed up in the chair to play puzzles and wait.

The draw went as well as it always does! P is truly amazing at what she does. Then it was off to the treasure box. She pulled out the bags for him again to pick from. He helped her empty the bags into the treasure box! He ended up picking a fish tank. I don't know how his little mind picks what he wants some times. It doesn't seem to make sense to me. He thinks something is really cool and then doesn't pick it. Always confuses me.

Counts came in in 12 minutes today! That may be a new record. His count was 221! A great 120 point increase post Friday's infusion! That is awesome and exactly what we like to see! Hopefully it will just continue to go up and all will be good for awhile.

August 10 - Infusion #44

August 10 - Infusion #44

We got over to the hospital at 7:45, plenty of time to drive all the way up to Purple and park. Levi is always excited when we do that. Levi and Bear found the elevator and we raced daddy who went down the stairs. He managed to beat us this time!!

We got checked in and went out back. Levi really wanted to make it to the BBQ at David's House so we had told him that he had to be super good and do everything right the first time to get things moving a little faster. So as soon as we were checked in he ran out back, said hi to Nurse A and then went right in the room to do his work before she could even get there. It was cute! He can be so good and motivated when he wants to.

They gave him choice of room and he picked Jungle (shocker!). He put his stuff down and then was off to the playroom to play.

Dr. K came in to the playroom to talk to us and discuss how things were going and to examine him. It always amazes me how truly accommodating they are, and how they want to make the kid as comfortable as possible and will do whatever they can to make the kid happy. Dr. Cl had ordered Levi's thyroid labs to be done and I hadn't had a chance to do them at WD, so Dr. K agreed to do it with his labs today. It's so nice that they will run whatever is in the system for us.

Then Levi was off to playing some more.

He is really into wanting to cut lately. It's cute and is working on his fine motor skills so I generally have no problem with it. He had a blast today cutting the red paper.

Then he found the etch a sketch. I am not sure he has ever played with a real one before. He was really good at it, and had a blast doing it! He spent a long time drawing with it.

Then Nurse S came in to access his port. The access went really well as usual. He has started telling the nurses "Don't hurt me!" but will mostly sit till and let the do things.

Then we got the benadryl and tylenol going. Levi didn't want to watch a movie, he wanted to go back to the playroom. We are fine with that, so off we went, with his trusty pole.

Levi was playing doctor. He's really adorable with what he does. He mimics what the doctors and nurses do. And if you pay close enough attention its a great way to learn where Levi is having anxiety issues with anything as he will act it out with the dolls, and tell the not to be worried and that it doesn't hurt.

Levi wanted to go on a wagon ride to the snack cupboard. He wanted bear to ride with him. So off we headed to the snacks.

We arrived at the snack cupboard and this is where things took a rough turn. The benadryl had been working for just enough time and Levi couldn't cope at all. He started screaming! Bloody murder screaming! Yelling at us with attitude, not being able to make up his mind, and just screaming. It was awful. The nurses even came to check on us.

After attempting to reason with him I gave up and just sent him into the room. If he was just going to scream at least we could be in the room with the door closed to muffle the noise a little. I got him the snack he usually chooses, the movie he generally wants, and a warm blanket, and he finally settled in Jay's lap. He zoned a little to the movie and relaxed some. Benadryl is a blessing and a curse. I love that it helps protect him from a dangerous allergic reaction, but I HATE what it does to him. It doesn't make him sleep anymore, it just makes him angry. I am sure it makes him feel strange and he doesn't know how to process that, so he gets mad. But man do I absolutely despise the 30 minutes or so of Benadryl screams and anger.

Eventually he came out of it a little bit and had a snack and a drink and settled in to watch his movie.

Eventually he was feeling even better and didn't want to cuddle with daddy anymore, so he moved to the wagon.

And then he kicked daddy out of his chair so that him and Bear could have it.

Levi's plasma was ready and they got it started. Due to his weight going up again we have gone up in bag size a little bit more. Levi watched his movie for a few minutes and than asked if we could pause his movie so that we could go to the playroom. Jay and I looked at each other and said sure, and headed down there. We love that he likes to play and not just sit like a potato during infusions, but it also is stressful in the playroom because he doesn't remember that he has a pole and a line. But the only way for him to get better at it is to do it, so off we went.

 We got to the playroom and Levi wanted to read the body book, so Jay and him set down to read some of it.

There was another little boy in the playroom and Levi and him hit it off and were playing together. Henry's mom got out the play dough and Levi settled in to play too. Nurse S came in to get some things started for Henry and to bring Levi's labs. His counts today were 101, so its very good that we are here. We are high enough that one infusion is plenty, but in need of an infusion. The perfect spot for an infusion.

After the play dough Levi played doctor some more.

And then pushed the baby in the wheel chair. It was an interesting parade. Levi pushing the baby in the wheel chair and Jay pushing Levi's pole.

After the dolls it was time for a wagon ride. The hospital had gotten this new panda wagon that allows you to clamp the pole on to the back of it, and both boys had to try it out. It was super cute, and so much easier to steer then the other wagons and since it holds the pole makes it even better. We rode around for awhile.

Then we headed back to the room for a movie and some relaxing time. Eventually it turned in to tablet time as the end of the infusion got closer. Levi did really well with everything.

Close to the end of Levi's infusion Dr. K brought in one of the new doctors. Dr. V retired and Dr. C is retiring at the end of August so they are bringing two new doctors on staff. It will be interesting to get to know them. and for them to get to know Levi and his unusual case. Hopefully they will be as great as Dr. V, Dr. C, and Dr. K.

Once Levi was finally done we went to the playroom for a few minutes as just as they were finishing up with Levi the hospital went into lock down. It ended up being a drill, but they still follow all procedures, so I felt it made the most sense for us to just stay in clinic and wait it out.

Once the drill was done, we packed up our stuff and we were outta there.

Levi and bear led the way!

Thanks guys for everything. Maybe we can make it 2 months again! Summer is always our best time for good counts. The fall and winter are the worst with all the germs in school that go around. In the summer his counts stay up which is so nice. Hopefully since we are in the beginning of August and still have over a month of summer we will be able to make it longer again, as its so nice to have the break and give Levi's body a break from the constant plasma.