Wednesday, June 7, 2017

May 25 - Blood Work

May 25 - Blood Work

Since it's Thursday we were off to blood work right after his well kids visit. Daddy was with us which doesn't often happen so that was a nice treat! 

We got there and there was a bit of a wait so Levi settled down with his animal book. He loves that thing! 

Once P called us in we headed in to the lab. Levi picked out his band-aid and then climbed up in the chair! 
P came over from doing paperwork and was getting ready when all of a sudden Levi had to go potty! In he rain to the bathroom. P and I set there and talked while Jay and Levi went potty, he was so proud of himself when he came out. Then we got down to business! The blood draw went great as always! 
After the draw he was off to the treasure box. He was showing daddy all the new things in the box. He settled on a green robot! Those robots were cool, the first time, I think we have 3 of them now. He loves them, but they break apart into so many pieces they are annoying! 

Then we were off to the fountain. Levi asked for a donut and I said sure, so we grabbed a donut and then headed to the car. We were off to school very late! But that's ok! It was fun to do drop off at school with Mommy and Daddy, not something he gets very often. He was being silly and showing off everything. 

After drop off Mommy and Daddy headed to a meeting with Levi's hopeful new Nanny and then we were both off to work after 11:00! At some point counts came in! His numbers were at 248. We are starting the descend, but with an infusion on Tuesday that is perfectly fine! And a count of 248 is still amazing! 

Next steps: Infusion on Tuesday! 

May 25 - Three Year Well Kids Visit

May 25 - Three Year Well Kids Visit

How is my baby three years old already?!?! It doesn't seem possible! It seems like only yesterday that he was born. He was a little anxious about this visit as he didn't remember who Dr. S was, he kept asking me if we could go see Dr. V. 

After the nurse did height and weight we had a decent wait until Dr. S came in. Levi started to lose it at this point. He is used to being able to go to the playroom at infusions if we have any wait. They had a box of books in the room so we read a few of those, but nothing made him overly happy. 

Once Dr. S came in the checkup itself went fine. Nothing that Dr. V doesn't do on a regular basis so he did ok with it. Dr. S was being silly with him and he was laughing a bunch. 




After the check up we did the normal discussion part of the appointment, this is where things didn't go the best. Levi wasn't interested in sitting at all and wanted to wonder around the room and play with things. Dr. S got very upset with Levi at one point for playing with a blood pressure cuff. This was partially our fault for letting him, but also partially the fact that he is a sick kid and the clinic he is used to allows him to play with them and try them on and off because they don't want them to be scary. Have to explain to him that different places are different. At this point Levi was very done with just sitting and listening. Dr. S was very distracted and actually left in the middle of the appointment to take a phone call about another patient. Once she came back in Levi was definitely done. We attempted to bring up some of our concerns with her, but she was just stuck in a different world and wasn't really hearing us. We discussed his Nursery School in depth which wasn't really a need for concern as we had it under control, she kept suggesting that we should "send him to Montessori schools as that fits our parenting style" and even went so far as to look them up for us when I clearly told her that we had a plan and had him on a wait list for another center that was better suited. She never asked any developmental questions about him or sleep questions or really anything at all. It definitely seemed like a wasted appointment. I wanted to bring up his Developmental Pediatrician appointment as well as our upcoming appointment with SMS but that just didn't happen. Overall it was very frustrating and unuseful. Maybe it is time to look elsewhere!

Tuesday, June 6, 2017

May 18 - Blood Work

May 18 - Blood Work

There was a little bit of a wait at the lab this morning. But just one person ahead of us and they were already in. Levi settled into the chair and waited for me to find him his animal book. Then we set down to read it together.
 It wasn't long before P called his name and he went running in. The blood draw went super quick and easy! He does such a good job. I barely hold him anymore.

Then we were off to the treasure box. It was FULL! So took Levi a few minutes to decide what he wanted. He finally settled on the 3 pack of cars! The same 3 pack he has picked at least 2 other times! So we now have matching cars! But he loves it and one of the cars in the package is green and one is purple so that makes it even better, he calls them the Levi cars and Mommy cars!

 We were off to the fountain! You can see in this picture he isn't looking at the fountain much and is instead looking at the donut case trying to decide if it's worth asking for one or not.
 He determined it was worth it and asked. I said yes, and off we headed to the donuts. The normal "donut lady" wasn't in today, so it was another lady who hasn't met Levi before. He wasn't quite sure what to make of that and kept asking me where the "donut lady" was. I tried to explain that she was on vacation or something, but he wasn't having it, so we just took the donut and headed out!

We were off to school! Levi ate almost the whole donut during the very short ride to school! Once there I had to clean him up! But he is getting used to that!

Counts came in a little later that morning at 272! An amazing number! I love watching the numbers tick up up up!

Next plans: Blood Work again on Thursday!

May 11 - Blood Work

May 11 - Blood Work

Today's blood work was super quick and easy. No line, no waiting! We were in and out! P was super excited to see Levi as always and he gave her big hugs!

He was off to the treasure box before I could even think! She had filled it with no things so there were all kinds of choices. He chose the stretchy guys. I told him that he had to pick one but P came up and told him that he could have both, so out we headed with the Pink and Yellow stretchy guys. He gave her a big hug and thank you as we were leaving.

Counts came in a little later that morning at 212! A great count post infusion with a major head bonk!

Next plans: Blood work again next Thursday!

May 9 - Infusion #27

May 9 - Infusion #27

Well this morning's infusion started out as an adventure! We got over to the hospital and parked on the purple floor at request of Levi. We were a little early due to a scheduling issue, but that is fine. We weren't rushing at all and were taking plenty of time. We finally got to check in and were waiting in line, the receptionist called us over and we headed over to the desk. I was ahead of the boys and reached the desk first. I was in the middle of saying Levi's name when all I heard was *Bang/Crack* and then screams! I turned around and Levi was on the floor screaming. Jay scooped him up as quickly as possible trying to comfort him but he wanted nothing to do with Jay, I scooped him out of Jay's arms, told Jay to finish registering us and I hurried down the hallway to the clinic with a screaming child in my arms. Everyone waiting at the adult clinic gave me lots of looks. I turned the corner to the youth clinic and the nurses were waiting wondering who was screaming. His head was already swelling up so they were off to get us ice. They immediately put us in the jungle room and wanted the ice on his head for 20 minutes. We got Levi calmed down some and then found him planes and a juice box. He settled down in my lap. He wasn't excited about the ice but the movie kept him occupied enough to let me keep it there.
The ice was definitely making the swelling go down! so glad we got it on quick! He has a pretty nasty cut and is going to be decently bruised for awhile.
Jay made it down the hallway and explained to me that Levi tripped over Jay's foot trying to turn around and since he was holding cranberry he had no hands to try to catch himself and his head just smashed into the lower part of the desk. Poor guy!

He bounced back fairly quickly though and it wasn't long before he was all giggles and smiles again and asking for a snack!

Before we unhooked the Benadryl it's potty time. When we came back into the room from potty Nurse T was on the phone, she said that her son's school had called and she needed to go pick him up. She would get his port accessed and the Benadryl started but then would have to turn us over to Nurse K. The access went fairly well though you could tell that Nurse T was a little distracted, completely understandable! Dr. V came in to look at Levi. He wanted to check out his head and make sure that we didn't need stitches. He said it was a nasty cut but it was straight and not gaping so it was fine as is. Just make sure we kept it clean and allowed it to heal. Levi was done watching his movie and wanted to go play. So off we went to the playroom. He had a non-riding pole so he had to push it, he did really well with it.
The trains were all set up on the table as another little guy was playing and Levi was very excited to join in and play with them! Levi was definitely digging at his port much more then normal. I checked him a couple times but he looked fine. Since I knew it was only Benadryl going in it couldn't be a reaction so we just kept telling him to leave his button alone.

Then he was off and playing with the star and reading books. He doesn't stay on any task for long! But he was having a blast! He was also continuing to dig at his port.

Soon his Benadryl was done and we were back in the room to start his plasma. He still wouldn't leave his port alone and I decided to mention something to the Nurses before we had a LONG infusion of saying "don't dig at that" and "don't touch that". The blood return on his port was doing great and there was no bumps or anything. The skin around his port did look a little puffy but nothing awful. We were all feeling around his port to see if it felt swollen when all of a sudden the port moved! Pots are a godsend, but they are the weirdest thing ever! After the port moved it all looked much better, but Levi was still digging at it. Nurse K had come in to help Nurse S with the plasma start as they have to double check everything. We decided to take the dressing off of his port prior to starting the plasma and seeing what was up. We would much rather access again now if we need to instead in the middle of an infusion. We started peeling back the dressing and he was not happy about that, it was sticking much more then normal and pulling funny. About halfway through removing it I realized that the only dressing was a tegaderm, there were no IV3000's underneath the tegaderm. Once we realized this and got it fully removed we redressed it with 2 IV3000s and then a new tegaderm and he never touched it again the rest of the infusion! We have heard from other moms that tegaderms have caused issues with their kids, but have never experienced it as very little of it touches his skin usually, but it's definitely true, those things are an issue! Not sure if it was itchy or sticky or what, but he was not having it!
After we got that all situate he settled into the chair and we turned planes back on! And he got another snack. We got his plasma started and he was all into playing with his tube but leaving his port alone so I'll take it!

After the initial craziness of the morning the infusion seemed to go fairly quickly. It's always the same rate, but seems like it takes hours and hours some days and seems like 20 minutes other days. But really it's always 75mL/hr for 15 minutes and then 125mL/hr for the remainder and his bags are always about the same size. Just depends on his mood to determine if it's going fast or slow!

Counts came back at 194! A pretty big drop since Thursday but still a great number since we are getting an infusion!

Jay headed down to get lunch and Levi set and ate!

The infusion was done! YAY! Levi wanted his 5 minutes in the playroom so off Jay and Levi went to play!
Watching the truck unload it's cargo!

Helping the baby!

Doing the babies blood work!

Accessing the babies port. 

Trying to show the baby how to ride on their IV pole!

Realizing that he is too big for the babies IV pole. 
After the playtime was up we were out the door to head home. Since we had all the craziness of the head bonking in the morning, plus the nurse who had to leave, and the tegaderm issue we were behind schedule. Thankfully we had left Jay's car in Concord because there is no way I would have made it all the way home and then back to Concord for class! Jay was tired so I drove to Concord while he snoozed and Levi crashed too. It was a quiet drive. We got to Jay's car and Levi did not want to leave me. It was a rough transfer into Jay's car but we made it and Jay and Levi headed home.

Next plans: Blood work on Thursday and infusion again in 3 weeks!