September 20 - Infusion #15

September 20 - Infusion #15

We arrived at the hospital in plenty of time, so Levi did a little wandering upstairs before we headed down. Well I should say, Levi and Cranberry did a little wandering.

We headed downstairs and got checked in. Nurse A was all ready for us so we went right in to do vitals. Levi did a super good job, and got his blood pressure on the first try ever! And he was excited for the oxygen sensor. He wanted to turn his finger red.

Turning his finger red!

Then we were off to the playroom to play until it was time to do more work.

 Soon it was time for more work, so into the jungle room we went for port access. We used the longer needle this time which is harder for Levi to push out and the extra large bandage which really sticks it to his skin. Nurse T was out today so we had a new nurse Nurse S. She was very nice and very good with Levi. We got the benedryl started and back to the play room we went, as he wasn't done doing his babies blood work when we had to leave to do more work.

About 30 minutes later the blood bank had his plasma ready and we headed back to the room to get that process started. For the first time ever they actually programmed the pump to the intervals, so instead of it dinging after 15 minutes and then another 15 minutes for them to up it, the pump would do this automatically. The huge advantage for us with this is that when it starts dinging the pump thinks something is wrong, and drops to 10mL/hr or essentially nothing. Now usually this is only for a minute or so before they come in his room, but sometimes its longer, so being able to keep it going at 75mL/hr, then 100mL/hur, and then 125mL/hr is huge!

Cranberry and Levi set and watched planes and had a snack! Since we had gotten over there early and everything was moving right along, we decided to not do lunch at the hospital. We gave Levi a snack and he was happy. We watched planes and then cars. Levi did get a little antsy near the end, and wasn't settling well. So daddy set with him. For most of the infusion he had insisted that it was his chair and he didn't want anyone to sit with him.

Levi's counts had been very high, and today was no exception. His count was 238! :) So this plasma should boost him up super high.
We did talk to Dr. V about the cold that he has had for almost three weeks now. He checked out Levi and listened to his lungs and said that all sounded and looked good, so it just needed to finish working its way out and we weren't concerned.

The infusion ended and we headed out. With a wave and a see you in 3 weeks. Everything has been so routine, so good! :)

Coloring at the diner we stopped at for lunch

After we stopped for lunch at the little diner right next to the hospital, we headed home. Levi fell asleep for part of the drive, though much less of the drive then we would have hoped for.

September 19-20 - David's House

September 19-20 - David's House

Levi had a rough night last night, between his slight cold and cough and the thunderstorm, him and I were up half the night. It was rough. So when he finally fell back to sleep at 6am, there was no way I was waking him up. He slept until around 8 and we got up and headed to nursery school then. So we were actually home when David's House called to confirm. We were all set and I told Levi where we were going after school. He was super excited. His day at school went well! I picked him up and we headed home to pack quickly and get on the road. Levi helped me pack by deciding who he wanted to take with him, we landed on Monkey and Piglet (they go everywhere), White Kitty, and Cranberry.

Then we were on the road to David's House. We decided to try our luck at eating dinner there again, so the drive was fairly straight. We did have to stop for gas and two potty breaks (oh the joy's of a potty training toddler)! But we finally got there! Levi was super excited when we pulled in. We went in and got checked in to the dino room. Our most common room. They had a crib set up again for him. I asked them to change it for a cot, but Levi had a melt down that he wanted the crib, so I gave in, figuring it would be a rough night of sleep at that point.

We headed downstairs and there was dinner this time. It was pre-made wraps, pasta salad, and tossed salad, and lots and lots of apples. Levi was super excited to sit at the table in the booster seat and did fairly well eating for the fact that he had been trapped in the car for the last 2+ hours.

After he ate, Levi and I headed down to the playroom for a little bit of relaxing and getting energy out. Sadly fall has come and by the time we get there it is chilly and cold outside, so the outdoor playground just isn't an option.
The wooden plane is his favorite toy ever. No matter where that thing is stashed it is the first thing he goes and finds and rides on.

He also played with the train table, stacked the checkers, got the trucks out of the toy box and then "flew" them around the room, determined that the doll ladder was able to be climbed by him so that he could sit on top of the work bench, played with the car ramp, and the doll house! Phew! He was busy!

Finally it was time to head upstairs to go to bed. Bed went ok. But took him longer to fall asleep then sometimes. I am not sure how comfortable he was in the crib. The mattress is quite thin and its small, so he can't stretch out that great, but he kept telling me that it was what he wanted, so we let him have it. He did eventually fall asleep:

Tuesday morning he was up very early and telling me he was hungry. I am not overly surprised by that, he didn't eat a ton of dinner as he was too active, and we've been told that he isn't eating great at Nursery School either. So he got up and climbed in my bed for a minute and then we headed down to the kitchen for breakfast. He ate fairly well. Having an apple, cereal, granola bar, and milk.

Since it was so early and daddy was still sleeping, Levi and I cuddled on the couch and watched an episode of Mickey Mouse Clubhouse. Then we headed upstairs to wake up daddy and start getting ready for the day.

Levi did the best he has ever done with getting his cream on his port. We didn't even have to hold his arms down, he pretty much just laid there and let me put it on and then put the sticker on over it!! Once we were dressed it was time to head out the door and drive over to the hospital.

Thanks again to David's House! We are so grateful that you exist and we are able to stay with you.

Note to my readers: The wooden train table you see in the pictures above has a ton of track on it, but no trains! If you happen to have any of the wooden trains that magnet together and fit on the standard track laying around and they are in good shape, I would gladly take them off your hands to donate to David's House. Feel free to contact me! :) Thanks!

September 15 - Blood Work

September 15 - Blood Work

This morning pretty much started out like they all do. Exhausting! We finally got ourselves moving and out the door. Levi earned his new PAW Patrol DVD last night for staying dry for 4 full days in a row!! (2 middle of the night accidents, in the same night, we don't count those against him, he's sleeping, plus both times he did yell that he had to go and got to the gate just not the potty in time, and 1 daycare accident in the bathroom, again he had asked to go and was in the bathroom just either didn't get his pants down fast enough, or was trying to stand like the big boys, not quite sure which!) YAY new puppies in the car, so this mommy was a little more sane on the drive to the lab.

We got to the lab and Levi was super excited to play with the echo in the garage tunnel. He was smiling and yelling the whole walk through the parking garage. I am sure that some people give me funny looks as my kid is happily yelling, but he's working on what an echo is, and really it's a parking garage, so I don't feel too bad. We were talking about who would be there today, would it be P or maybe Pa or D. Levi was convinced it was P. I said, I don't know. We turned the corner into the lab and P says "Is that my friend coming?!?!" I was SOOOO excited that P was back!! And so was Levi! He went running in to pick out his band-aid. He picked out a candy band-aid and asked if he could play with Grammie and make the fish swim. I told him he would have to ask the next time they were together!

The draw went AMAZING!! I almost hugged P!! It was as if she had never left. Levi and her were giggling, he set super still, held his arm out for her, never cried. It was perfect. She got him on the first try (as always!) and he was off and running to the treasure box before you could say "blood work!" He picked out a skateboard and was super happy! He and P gave each other HUGE hugs! :) And we were on our way out. He drove his skateboard everywhere! Across the fountain, up the wall, on the floor, over the chair, it was super cute!

We were out the door and on the way to Nursery School!! Back to being at the hospital for less then 15 minutes total from pulling into the parking garage to pulling back out!! (Sometimes without P it had been upwards of 45 minutes!!) My life is sooo much better!! And so is Levi's!!

As of 1pm there was still no fax from the hospital and no call from K. Jay called the hospital lab to try to figure out the issue and we are facing red tape. The lab manager was still trying to say that we needed to come down to the records department. Jay was kind, but firm with her saying that, no we would not be coming to the records department, we had permission from both our doctor and the VP of the hospital to receive the labs directly. The lab manager said that she needed the form faxed from Jay again (seriously... you should have it on record) and that she would need to talk to the VP to make sure we were telling the truth. UGH! This is a major nightmare just to get a CBC result!

As of 3pm still no fax from the hospital or call from K, so no clue what his counts are. No call from Dr. V either so assuming they are at least above 150. but figuring that they have probably dropped from last week as we are going into an infusion next week, Levi has a cold, and has some bruising (all explainable at this point, but still dark bruises).

Update: Counts came in just before 5pm (I swear K is doing it on purpose now!) His count was 292! So an amazing count. My guess is that we are on the way down and that it peaked somewhere in the 300's, but with only doing once a week blood work this isn't a way to know that. He took a pretty nasty fall at swim lessons last night and banged up his arm, neck, and face, if his counts had been low I might have actually called the on call night doctor to see if we should be concerned, as it bruised and swelled up super fast, but with counts that high I wasn't worried at all, a little loving, and we told the water "that's not nice to hurt me" and we were all smiles again!

Next plan: infusion on Tuesday!

September 8 - Blood Work

September 8 - Blood Work

Levi was very excited to be going to lab work today. He told me it was a P day, and I tried to remind him that it may be another lab tech, that Nurse Pa had mentioned something about another month before P was back. (At this point I will be giving her a HUGE hug when she is back!)

As we were walking in to the hospital Levi asked if he could have a donut, I told him no. He said, "OK a dunkin donut?!?!" I told him no to that as well!

We got to the lab and it was a whole new person, Nurse S. She seemed very nice, but didn't seem like she really knew how to handle kids. She did the paperwork pretty quickly. But then took FOREVER to get the blood work started. She must have put the tourniquet on and off his arm 4 times, and was generally just very slow. After about the third time of it going on and off, Levi started to get very antsy and aggravated. She looked at him and was like "what's wrong? you were fine!" I wanted to look at her and be like "He's 2, and you are taking forever! Just put the needle in his arm and be done!" Finally she stuck his arm, and totally missed the vein! Like completely, even I could tell it wasn't going to go in. She wiggled it around a bunch and Levi was SCREAMING! I haven't heard him scream like that in FOREVER!! It was awful. She pulled the needle out and his arm didn't bleed at all! A great sign of she wasn't anywhere near a vein! She looked at me with the look of "I told you we needed someone else" and I gave her the look of "he's fine it's you!"

Levi asked to go to the potty so I took him in their to calm down while she called for another nurse to help. Levi wanted to pee in the cup, but after some convincing I told him to pee in the potty. Then he asked if he could get a treasure and I said, not yet, you still haven't given your blood yet. He was very upset! understandbly! So I told him that if he set for blood work again, that we could get a donut on the way out! He seemed happy with that!

We went out of the potty and Nurse N was there! YAY. She got him on the first try the last time we had her, and she didn't disappoint this time either. Finally the blood work was done! Levi was off to the treasure box. Nurse S was like "oh he knows where it is..." I was like "yea, we are here a LOT!" He picked out a skateboard and then was looking for a surfboard too. I bent down to help him find one. Nurse S said "they are really only supposed to pick one thing!" I gave her the mother look of death! The don't even come near my kid or say a single thing to him look. I said "we do 1 per stick!" that shut her up pretty quickly!

We went over to the little cafe to get a donut! They had one sprinkle donut left and Levi asked very nicely for it! Then we were on our way to Nursery school.

Unfortunately no fax came in today. :( Seems like we are going to be fighting this fax thing as much as we fight for K to call us. Which of course she didn't do until 4:50! Thankfully his counts were great! 282! Awesome! The infusion is doing its job. Levi has a cold and his numbers are still that high! So that makes me very happy!

September 1 - Blood Work

September 1 - Blood Work

I knew better then to say it was a "P day" today and instead told Levi we needed to go to the hospital to get our blood work done. He however looked at me with this look of "umm duh mom" and said "Yay it's a P day!". Hopefully she will be there today.

We got to the hospital and were walking in through the garage tunnel and I asked Levi who he thought would be the lab tech today. He told me "P mommy" I said "really?!" he said "yup P. maybe Pa. Nope a New P!" for the rest of the walk in he kept telling me "Not P, new P!" It was cute, but I wasn't quite sure what he meant. We got to the lab, and neither P or New P were there. Today it was Nurse Pa. We got to the desk and he saw who it was, and he looked at me and said "Wheres P?!" I think Nurse Pa was a little taken back but she smiled.

Being silly while we waited.

Caught a little smile!

We didn't have to wait long before it was our turn. We went out back and Levi picked out a band-aid from the cupboard. He picked Candy but was upset that there were no fish on the band-aid. Nurse Pa came over and attempted the lab draw. For the most part it went ok. She put the needle in the opposite way in his arm from normal, therefore hitting a different vein. She missed the vein at first but after a few wiggles she got it in the vein. The filling of the green tube went fine. She started to fill the purple tube. Levi was very very squirmy and she wasn't paying the most attention to him, and suddenly the needle was like lifting up in his arm, it looked AWFUL. I have never seen something look like that under someones skin. A second later the needle popped out! UGH. The purple tube wasn't full yet. And that is the important tube. Nurse Pa put the band-aid on and was trying to get the tube to settle down so she could see exactly how much was in it. She asked if we had a few minutes and I said "of course" and she sent the tube down to the lab, to see if the tech was happy with how much was in the tube to do the CBC with. Levi happily played on the floor with the surf board and skateboard that he had picked from the treasure box.

She sent the tube down and then called down to the lab. Of course I could only hear one side of the conversation, but from what I could hear I am pretty darn sure even the people downstairs know who Levi is. She said "I just sent you a sample for a stat CBC and was wondering if you could verify if it was enough, it's a pedi" a few seconds later "Yes it's Levi, he's still here!" It was really cute. After about 5 minutes they called back and said that it was enough and I was very thankful because I didn't want to have to stick him again. Levi and I were out the door and on our way to Nursery School.

During this visit we had asked about adding our fax number to the lab slip as our Dr. V had instructed us to. The number was added. YAY!

It wasn't long before Jay received a fax at work. AWESOME. Oh wait, maybe not. The fax was asking for a fax to be returned with a signature and other information. Ok, understandable. Jay filled out the necessary paperwork and then faxed it back to them. A little while later they called and said, "we are unable to fax you the lab results, it must go through a doctor, however if you want to come down to the records department and show an ID we can give you the results." Umm... what?!?! that's crazy! Our doctor has authorized for us to receive the results directly. This is very frustrating. I need these numbers! Jay asked for the number of a higher up and we received the number for the safety VP or something like that. Jay called and left her a message.

The reason we really want to get these results faxed to us, became even more apparent when Levi's results didn't come in from K until after 4:30 for a stat lab that gets done at 8:15 in the morning. UGH! His counts were 171. Not a great number. Definitely not what I expect to see just a few days after an infusion. Now we start our constant look to see how he is doing. And wondering if we should take him again for labs on Friday or not. :( Not what I wanted going in to a holiday weekend.

Friday Update: Jay got to work in the morning and the lab results had been faxed and were sitting on his desk. Umm... WHAT?!?! they said that they couldn't send them, but then they did without the VP returning our call.

Tuesday Update: The VP called Jay back and they had a nice conversation. She apologized for not returning our call earlier, said she had been on vacation. She said that with our circumstances it would be perfectly fine for us to have the labs faxed and to let her know if we don't receive them the next time. Seems like a perfect example of right hand meet left hand. Now lets hope the labs get faxed on Thursday!

August 30 - Infusion #14

August 30 - Infusion #14

The morning started like all other infusions. We headed over to the hospital. Levi tried to guess what color we would be parking on, and like always he guessed blue (I don't think we have ever parked on blue!) and then we went into the hospital. We got checked in. Levi asked for his key and proudly wore it! Usually he puts it on Mommy's shirt. And then we headed out back. He walked over and said hi to Nurse A, Nurse K, and Nurse T. We were directed to the jungle room per normal and we put our stuff down.

Nurse A was on point this morning and ready for vitals as soon as we got our stuff set down, so in we went to the vitals room.

We always try the reusable o2 sensor (the gray thing he has his finger in) but he finds it way too exciting to play with it to let it do its job so we always end up using a sticky disposable one. Someday he may leave it on! :) Otherwise vitals went fairly well!

We were off and running to the playroom.

For several months now it had been the plan to have a discussion with Dr. V in September about future plans. And since its the last day of August we had that discussion today. I was going to request for a Child Life Specialist to watch Levi during the discussion so we could have a good adult talk, but Dr. V surprised me and followed us to the room when we were headed to get accessed. Usually he doesn't make rounds until later in the visit. He started with a check of Levi who looked great. He seems to always look good at appointments and then is covered in bruises on Wednesday, it's slightly frustrating! He is doing much better with opening his mouth to see in, and then Dr. V and Levi had a funny discussion about what was in Levi's ears while he checked them. Dr. V said a giraffe, Levi said an elephant. It was comical! Dr. V really is great with the little kids! After the physical exam we started talking. Levi was being a little crazy man. He always is before being accessed. I think it's a little bit of anxiety, of knowing what is coming but not quite sure, thinking it might hurt, not wanting the feeling of the Benadryl, just a little bit of everything. Nurse K nicely took Levi to the playroom and got him stickers so that we could have an adult conversation. It was so nice of her and she did it completely on her own without being asked. So Thanks!!! :)

The discussion went well. We talked about some other medical options that we have learned are available (Koate being one of them) as well as just going to a "wait and see" method, with pulling regular labs and only doing plasma when necessary, we also talked about going to 4 weeks instead of 3. Dr. V was very open with us about everything. He read us several e-mail conversations he had had with doctors back in the January/February time frame that talked about options they had used. All seemed like they were partial to Plasma infusions on a regular basis at this point. We also talked about how Levi had just begun Nursery School and would now be exposed to 21 other kids and a whole new set of germs. In the end we decided that we would stick with our 3 week schedule for infusions and re-discuss in the new year. He said in the mean time he would reach out to Switzerland again about Levi's case as well as discuss with several doctors who have patients both using Koate and Plasma and get some other recommendations. We were all very happy with this decision. It's really nice to feel involved in your child's medical needs, and to know that your feelings are being heard by your child's doctor. We also, once again, discussed K and her inability to get us lab results in any sort of timely fashion. Dr. V was completely on board with adding our fax number to the lab slip so that we should receive the lab results at the same time that his office does!! Awesome! That means we should have the results within 30 minutes of the blood draw (its a stat lrab!)

Finally it was time for Levi to be accessed. The access went ok. Levi was very very squirmy. He wrapped himself around Nurse K's arm as she was trying to put the needle in his port, and put his hand over the port, which resulted in us having to start over. It has to be a sterile environment, so as soon as he touched it we had to start over! He hasn't been doing great with needles lately, not 100% sure why. Finally the port was accessed and the Benadryl was started. We settled in with Planes and a cuddle!

Levi was being silly with the Selfies today!

The Benadryl ran out and we switched over to Saline to flush the line. His Plasma was ready and Nurse A went on the long trek to the blood bank to pick it up for us! We got the plasma started and headed to the playroom to play. We haven't done this with his pole for awhile, but he seemed very sleepy and it's sooo frustrating when he falls asleep during the first 15 minutes of his infusion, and then wakes up during the 15 minute vital and hives check and thats all the nap he takes. So we figured we would let him play for those 15 minutes today. He did really well in the playroom. Staying fairly close to his pole, and even telling me at one point "I go over there now" and telling me where he wanted his pole so he could play with a certain toy!

Riding to the play room!

Getting food out of the fridge!

Grilling his watermelon! (EWW!)

After the 15 minute vitals check we went back to the room to watch Planes. He was quiet, I thought he was asleep, but no, he was just really into watching planes! When planes ended he started getting fussy that he was hungry and that he wanted the Crazy People. Thankfully that is the other movie Jay had grabbed (we always watch Planes and then we generally alternate between Cars and Crazy People (aka Inside Out)). Jay put the movie on and then headed down to get Lunch. Jay hadn't been out of the room more then a minute when Levi asked where Daddy was. I told him he went to get lunch and Levi flung himself backwards on my lap and screamed! "I want to go with him! I want Daddy!" I was taken aback. He has been so quiet all appointment and now this! And he has been so all about Mommy lately that he generally doesn't even notice when Daddy leaves. I tried to comfort him, when he started saying "Ouch, It scratches, Ouch". Nurse A came in and asked what was going on. I said I wasn't sure. Nurse K came in to take a look at his port, and sure enough he had pulled the needle out of his port again and the plasma was going under his skin. Second infusion in a row he has done this! So we had to completely access him again. Nurse K decided that we should put in a taller needle that he hopefully wouldn't be able to push out as easily! And a HUGE super sticky bandage to keep it covered! He wasn't happy about this turn of events. Thankfully Nurse A came in to help me hold him since Jay was still down getting lunch. We got the infusion going again, hoping that everything would go fairly status quo from here on out.

Jay got back with lunch, which Levi barely touched. He asked to go potty and play, and we said fine! Nurse K wanted to take a look at his port on the way to the playroom to make sure it was staying in and all looked fine.

Levi played for awhile in the playroom!

We went back to the room to finish the infusion and the crazy people!

Jay at the infusion.

Finally it was all done! We cleaned up the room, Levi got his last few minutes of playroom play before we got in the car for the two hour ride home. He was alseep within about 20 minutes of being in the car, and slept most of the way home.

Levi's counts had been 190 at the infusion, so still very good! Hopefully this infusion will bump them even higher!

Plan: Back in 3 weeks for another infusion. Blood work on Thursday's until then, and Monday's if need be!