Elle is sick.....

Well, we thought we were all good......and sure enough I just get to the hospital and Paul is calling telling me Elle needs to be picked up as she is sick. She is pale, tired and pooping like crazy!!!! In order to make sure she is not dehydrated we are giving her pedialyte along with 1/2 her feed. She has been sleeping all day. Just opens her eyes to poop and get changed....My hands are sooooo dry from washing them every five minutes.....I don't want to get this again!! Paul went to Elle's parent/teacher today. She is doing very well and they are very happy with the progress she is making. They have lots of goal they are working on with her and she is enjoying attempting them. They also are really enjoying Sharon her nurse. We also think she is amazing and are lucky to have someone like her caring for Elle.

Kaden had a decent day. Auntie Lori spent the day with him. She hasn't seen him in over a week and was really looking forward to see him. He had 2 needles today. One was for the flu and the other was for RSV (a really bad cold that babies can get) He had his oxygen therapy (on his butt) and music therapy......now there's an interesting combo!!!! He totally enjoys the music therapist. I only saw him for 5 minutes today so I am looking forward to tomorrow when I can see him. Paul is there tonight.

Cold outside....burrrrrrrr.......

Busy day today. I had to take the scale that we use to measure Kaden's formula to get it checked and it turned out it was off just a little bit. They fixed that and then off to the hospital to meet with the dietitian to go over how to measure his formula with the scale. Then we had a play, butt change, oxygen therapy on butt, another butt change, more playing, and then off to sleep, more playing and then a feed......I had to leave today at 3:30 to get back for Elle and he was still awake....I hate leaving him while he is awake...:( His Phenobarbital blood level today was 40. They did a ketone blood level which was 5 and that is very good. Shows that his body is in a ketotic state and that is where we want him. His urine ketones still only show between 4 & 8 but that isn't bad. His blood sugar however is low therefore we have to change his feeds to 5 times a day. He was on 4 times and that worked much better in that the afternoon was a bit more flexible for going out but I guess my kids don't want us to have a life.....I should be use to that by now!!! Guess I will just have to do some tube feeding while shopping!!!! OH!! He also enjoyed the music therapist this afternoon. She came and sang to him for awhile...it was so cute cause he was smiling at her looking at her out of the corner of his eyes.....flirting with her......He was awake tonight and had a few visitors.....Angel one of the nurses from PSCU. She took care of Elle in PSCU (and Kaden) when she was there for 9 months.....we think she is the greatest!!! She really is an angel. Jackie on of the nurses aids brought him a bag of goodies....she is a real sweet heart. She has given Elle blankets and stuff before. Its nice to have those kind of people in our lives.

Elle had a good sleep last night so she was wake and ready for school today. She did nap at school but nothing major. Was in her walker in gym class. Elle had a visit with her Auntie Lori tonight. Auntie Lori just got over a cold and was missing her Elle.

Tuesdays excitement......

Kaden was more alert today. Yesterday he was very sleepy. He has a wicked butt rash so he had a little 'oxygen therapy'.....which means we take his diaper off and he lays on the bed with a plastic cup that has the oxygen tube stuck through it blowing on his cute little butt!!!! He was so cute laying there. He was rolling onto his side trying to get onto his tummy.....too cute......Paul was with Kaden tonight and he slept the whole time except for about 10 minutes. Just enough time to change his diaper and give a few smiles. He has a 'float nurse' tonight till 11:30.....needless to say she had absolutely no idea what to do. Not too familiar with g-tubes (feed tubes) so Paul had to tell her she needed to clamp it between meds so that the med that was just given doesn't come shooting back out.....AND.....he has a neighbour that is on isolation (you have to gown,glove & mask) before going in......she didn't know anything about being in isolation.....ahhhhhh!!!!!! Kaden better not get sick......anyways we made a call to the charge nurse and he is going to clarify with her what it means.....brutal!!!!! They will be taking a Phenobarbital blood level tomorrow morning along with a blood ketone level and a glucose blood level. His blood sugar has been a bit low so they want to check that. After they check that they will be taking the IV out as its just a source of infection and if its not being used I would rather it be taken out.

Elle is good today. She had a great sleep last night and I had to wake her to get ready for school. She had a nap at school and enjoyed 'special music'!! She loves music. I stayed home with her tonight as I have been at the hospital alot cause we have had extra nursing for her. She had a nice bath and alot of kisses and snuggles.

The above picture is of Elle in the walking system that Paul and my dad made for her to help her learn to walk......

Monday!!

Last night before leaving the hospital Kaden had all his 9pm medication and shortly after that he threw EVERYTHING up.......I got him changed, and cleaned up and soon after that he fell asleep and Paul and I left. Elle was still awake when we got home so mommy got some snuggles before she fell asleep. She was up this morning at 6:10am!! Someones having a nap a school today!! I am busy cleaning up Kaden's room as its gotten out of control and I think its giving off a vibe of we don't want him home so I thought it would be a good idea to get it cleaned up and ready for him when he is ready to come home again!!!!!

Hanging out with our guy...

These were taken Saturday afternoon.....a good day!!!!!!

Saturday afternoon.....

Elle's nurse was here taking care of Elle and Paul and I were off to the hospital to spend the day with Kaden. After a Starbucks run and and a discovery that we had forgot to pay the van insurance we finally made it there!!! He had just fallen asleep when we arrived but woke up shortly after. He was up from 3am till 1pm today....he slept so much this week that I think he is abit confused and hope that he doesn't get off track cause he was doing so well. Anyways, we played all afternoon. He had smiles for his mommy again today but those eyes of his are still looking like he is on way too much Phenobarbital. They have held his doses and are doing another blood level at 9pm tonight and if all is well they will resume his regular dose....oh will this madness ever end??

Elle was up today at 5am and didn't go back to sleep till 7am only to wake up again at 9am!!! She felt abit warm when I fed her so we gave her some Tylenol in hopes that she was not getting sick. So far today she has been fine and has played all day and has finally fallen asleep for a little nap.

Well my mom and I went to the hospital tonight and thought we would be home around 10ish as usual....NOT!! For some reason someone threw out Kadens formula and he was left with none for the rest of the evening and morning.....not good. His Ketogenic Diet has a special formula that is not bought in the stores. So, amazingly enough we had picked up our order at Deer Lodge so we had it at home. I had to get Paul to check the special scale and then pack up the formula and dad had to drive over, pick it up, then drive to the hospital to drop it off to us. Then, a couple of the nurses, and a resident had to somehow figure out how much powder and water to mix to try and get the right ratio.......at that hour there are no dietitians, kitchen staff.....nobody.....anyways they managed to come up with something and he got feed an hour later. His Pheonbarbital blood level was 40 so he was able to get his evening dose and they will check it in the morning.

Up from the basement.....

Well your all probably wondering where the heck we have been! Kaden has been battling a Gastrointestinal Virus. He has been throwing up since last Friday. He also has a very (shall we say) explosive butt.....which is quite irritated. His throwing up has stopped now and he is just trying to get stronger. He had some smiles for his mommy today but was quite weak and pale looking. His ketones are only 4 due to all the fluid loss/IV fluids given due to dehydration. His Phenobarbital blood level today was.......6o!!!! WOW!!! Way over toxic levels. They held his 3pm dose and we hope to get this down. May be one of the reasons he is so sleepy today.


I have also been infected by his little bug.....better now and back with the real world!! I was bonding with the basement for the last five days. Paul was bonding upstairs trying to take care of Elle and tend to Kaden at the hospital. Nana, Papa and Grandpa also contracted that lovely little bug!! They are still recovering. Thanks to all the helpers we had this week. Your willingness to help is much appreciated !! :)


Elle enjoyed a great week at school. Most days this week she also enjoyed 2 1/2 hour naps at school!! She got her 'report card' today. We are so proud of her. She is learning to communicate through a 'big mac'. That is a large button that you can record stuff on and then she can communicate in the activities they are doing in class. Her classmates enjoy helping her. She is also spending lots of time in her stander which she absolutely loves. We also sent her walker to school which she scoots around in in gym class. She is a beautiful little girl with a happy personality....thankfully!!!

We have a nurse for Elle tomorrow afternoon so Paul and I will go spend time together at the hospital and snuggle our other little cutie!! Hope to report good things tomorrow about all.