Saturday, December 29, 2007
Friday, December 28, 2007
And then it got real interesting... not! Jadon then turned his attention to me, and started the count down, or up in this case... From 6 and 7 all the way to 30. LITERALLY: "...and when I am seven, Nolan will be eight! And when I am eight, Nolan will be nine!"
I have never been so happy that he is only counting to "30" right now. He actually can count to "100", but as he tells me all the time, "mom, I am only in preschool, I don't have to count to 100 until I am in Kindergarten, and that isn't until September".
The kid's right... OY!
I have noticed that he has gotten really detailed and really technical about everything. There isn't anything really that we can get by him anymore including spelling. We are trying to spell backwards, but if I lose my husband while spelling forward, imagine the confusion when I spell backward.
Oh the things they come up with.
Note to self... Don't assume anything. Puppy won't let his true personality show for a FEW days. We are on day 3, and the real "Dash" is emerging! I think the name was perfect. The first two days, he stayed right with us when we were outside, but tonite, that little turkey took off across the front yard - dashing through the snow - 8" of it - and there was no stopping him. He heard birds and wanted to see where they were. Yes Shan, "short legs" can actually run!!!
Toby stayed in the basement. So they didnt have each other to commiserate with. Last night as I carried Ruvy to the basement, (along with their food and water to be sure they were eating properly), she promptly with her hind claws tore 4 rather large holes in the shirt I was wearing. Suffice it to say I do not think she is happy with me! This morning I carried Toby up to bed with me while Jim had Dash outside. Now I think he will be under the bed the rest of the day!
It will get better. They will come around. They have to. The rafters can only be solice for so long! :)
Sunday, December 23, 2007
Saturday, December 22, 2007
His hemoglobin is 11.1 which is still low, but no one seems to know why. We have all lost our perspective of time this past month. His doctor here said it made sense since he had such a hard week last week, only she forgot that we have been home over 2 weeks now, and the difficult week was 3 weeks ago.
We still have to have his platelets checked every week until January 16th when we see the Hematologist. He will then determine if we can go every two weeks, or if we have to stick with the weekly regimin. Our goal is to have his numbers stay the same for 3 months. If they start to drop then the concern is that the steroids made them come up, but that they are done doing their job, or wearing off, and a new plan needs to come into play.
We didnt do blood work last week because my son's magic blue eyes did their job on Dr. A, and she let him off the hook! Fingers crossed Santa is giving us the best Christmas present by keeping our little boy healthy!
Thank you Santa! Merry Christmas to all!
Sunday, December 16, 2007
We dont have a name for him yet. We spent all weekend trying to come up with something, but we can't all four agree on one name. Jadon agree's with everything (even McDonalds, and M&M which were our test names). His color is called "Blaze", so we are considering "Blazer" if nothing else comes up!
He is a Pembroke Welsh Corgi. He was born on October 5th.
He is the Breeder's favorite. We had talked about another one (a female), but when I saw this little guy I knew he was the one! She said he is very mild mannered and "the nicest one of the litter".
We could have picked him up this week, but I didn't think introducing him to a new house with 3 cats (Buddy moves to Brenda's on Sunday) and two kids on the busiest week of the year would be fair, so we are picking him up on Wednesday of next week!
Check out my new website: www.itsmystore.com/pomad Friends and family get great discounts!!!
Have a Happy Holiday!!!
... and wait til you see what I got for Christmas!!!
Wednesday, December 12, 2007
You should have seen the smile on his face, and heard the under his breath "woohoo" as we walked out the door in the opposite direction of the lab!
Thank you Dr. Amechi!!!
S!F!D! How do you tell him you lied? How do you explain to a 5 year old that he needs to have this done, and that it isnt just today, but every week for the next year?????? Because I fear he will pack his Thomas suitcase and split town at any moment now!
I have tried the following:
- Me: "If we don't do this, they will make us go back to the hospital" - J: "I dont care!"
- Me: "We have to make sure you are getting better" - J: "I am better"
- Me: "I will take you to McDonalds" - J: "I dont want McDonalds"
- Me: "You can pick out a new Thomas Train" -J: "Ok" ... and then with a little more thought "I dont want another Thomas Train"
- Me: "What do you want to pick out?" -J: "I don't want anything, I just don't want to go to the Doctor"
NOW WHAT??? I have used the two good old stand by's/never fails...
Did I tell you what he has been telling people? Apparently his "magic naps" were not so magic. He remembers getting poked in the butt (really his hip, but this is how he tells it). He has told several people that when he took his first "magic nap" he felt them poke him in the butt twice (which they did!). Then he told my aunt and a few others that when he took his second "magic nap" he watched them take the string out of his mouth. BOTH times, he was completely asleep - I know this because I was there before and after! They did not tube him because of the risk of bleeding, but he was as under as one can be without being tubed. I have heard of the phenomenon of people not "completely under", but my 5 YEAR OLD??? Holy crap! I know we talked a little about the procedures in front of him, but he was usually distracted, and never once did we talk about the Bone Marrow Biopsy process in front of him, including when, where and how often. So he has to be remembering it.
So now I am back to... what do I do now? I have to make him go. But I know I am going to be hauling a kicking and screaming child into the place that is no longer safe to him. And it is the same place where he had his sore removed, so I am sure that will factor into it.
UGH!!! I will take any advice!
Thursday, December 6, 2007
This is the "view" in the Childrens Hospital. Even the hallways are meant to be comforting!
This is the room that we won in the "lottery"! There are only two of these rooms, and let me tell you, for as much as I am sure there were others that deserved it more then us, I am so happy we were able to stay here!
Thank you to all the donors that make these rooms possible! The really cool thing about Childrens at the U of M is that they are building a brand new hospital separate from the main hospital to make it more convenient for families and children to stay. All of the rooms at the new hospital will be similar to this. They wont be as high tech, but they will have similar qualities to this room with conveniences such as in room fridges, microwaves, computers, and family bathrooms.
Childrens at the U of M is truly a special place to be when you need to be there!
And today, as we came home, we were so grateful to have had all of your prayers, and kind thoughts and well wishes for Jadon!
Wednesday, December 5, 2007
Jadons count is get this... 184,000!!! We all had our jaws drop to the floor - HE IS BACK TO NORMAL!!! At this rate we sort of expect him to be near 300,000 by tomorrow since he has doubled and tripled the last two days - it may be wishful thinking, but at this point, any number higher then today is perfect because, well, his counts are back in normal range!
Whether or not they ever see this, we have to thank all of our wonderful Doctors and Nurses, Aides and Child Family Life Specialists for making Jadon's healing as comfortable as possible!
Hemonc Doctors (Hematology/Oncology)
Dr Michael Burke
Dr Susan Kearny
Dr Marcie Elwein
Dr Charlie DeRubeis
Dr Tate Gisslen
Dr Rhys Strasia
Dr Blaine Milne
All of our Nurses
Sara "our little brown haired Sara"
Sari and Shannon from 5A
All of our Aides
Child Family Life Specialists
Emily - you made our procedures so easy
Sarah from 5A
And our Emergency Staff
Thank you all so much for helping us heal as fast and as painless as possible! You are all amazing, and although we really enjoyed meeting you all, we hope to never see you again! :) (Except Dr Burke who will follow us for the next 6-12 months in Mankato that is!)
And once again, thank you for all the wonderful donors that made the Adopt-A-Room possible for us!!! http://www.adoptaroom.org/seeourwork2.html (Dayna found this for me yesterday, but since she is now sick, I will post it!) If you look at photo #1, our room is the one on the left. We did not have the nice pull out sofa, but we had a roll-a-way that worked just as nicely!!!
And most of all, thank all of you for supporting, praying and thinking healing thoughts for Jadon! Dayna was right, you all prayed hard - and it worked!!!
Thank you thank you thank you!!!
Tuesday, December 4, 2007
So... back to the basics... Life is not ours yet... we are still here, and Mantha is still with friends, and our life is not ours to live. We are on someone elses schedule all the time, our meals for the most part are dictated by the "chefs that be" (which I will say, they are quite talented - food is good here!), and our sleep is never uninterrupted. To sum it up, we are getting sick of this place! It has been a long haul, and we are not by any means ready to be released. We are at least 3 (counting today of course) days out, more if we cant get a good suture removal tomorrow.
We have played the playrooms to death. We know all the docs and nurses by first name, and serial number. We have their schedules memorized, and their habits etched in our brains. And they ours. And we are so tired. Jadon has been really good at "passing out" and staying there unless we have an accident at night (which who can blame the poor kid - he is getting two bags of fluids a day plus juice and milk by mouth). Even our fun room is getting boring. Although we have 5 tv's total (a HUGE plasma, and two small ones, as well as two others that control the room and are tv's), there is only so much you can watch is one week and not get tired of all of it!!!
But, there has been some good stuff too! Did I ever mention that he is eating finally? We got the ok after the BMB yesterday! He woke up from anestesia with McDonalds in his bed - barely awake he started horking fries like he hadnt eaten in months!
Here is our "plan" for the week:
Today, round two of steroids, labs
Wednesday, round 3 of steroids, labs, and hopefully remove sutures
Thursday, if we get sutures out on Wed, we can go home
Friday, if we didnt get sutures out on Wed, Fri is our next suture option
Saturday, worse case scenario "go home day"
So that is that! Dayna found our room online, so I think she is going to post that in a little while. Again, thanks for all the thoughts and prayers!!!
Oh, and Mantha, although sad that we are all apart, is having A B.L.A.S.T. with Melissa, Josh, Bailey (her bff) and Shelby! We miss her to death, but know that she is with a great family while we are gone!
Monday, December 3, 2007
Jadon's platelet count has jumped from 5,000 to 12,000 at 1:30 when he was in getting the bone marrow biopsy done, and jumped again an hour later to 17,000 when his labs were checked following the biopsy. This is AMAZING news. This means, it is likely not a production issue. Not only that - but it means it appears that this is ITP - and NOT something else way scarier.
For right now - the docs want his platelets at 50,000 before they are willing to take his stiches in his mouth out - and he is scheduled to have them out Wednesday afternoon - he must stay for 24 hours following removal which puts them home Thursday. If his platelets are not at 50,000 the next available time to remove the stiches will be Friday, so they would need to be watched until Saturday and then they can head home.
The doctors told Lori that ITP usually resolves within 6 - 8 months, and usually is not worse after the initial problem.
Let's keep praying that this is a one time issue and for Jim & Lori who have been very worried about their little boy (something I SO get).
As of right now, there has been no change, no labs have been done, but will be done while he is under - speaking of which -
Jadon's BMB has been pushed back 1pm - and results are expected within 3 - 4 hours.
I will be updating as soon as I know anything.
If you come here - please leave Lori, Jim or Jadon a message, or comment below. They are, understandably, very worried.
Sunday, December 2, 2007
His numbers are not changing, IVIG appears not to have worked, nor has the Platelet transfusion, so the next option is steriods (and possibly another round of IVIG or Platelets or both - it is too soon to tell). Pending any new diagnosis, there will be 3 days of IV Steroids, followed by suture removal and hopefully discharge.
Right now we are looking at Thursday to be the earliest we will leave, but they are not promising us anything right now. They need to focus on the biopsy, the results and the next plan of attack.
It has been a long haul, and we are only half way through it. We need EXTRA prayers for tomorrow. We need to hear that this is for sure ITP - and not something more complex (ITP is complex enough for me!). Please say a few extra's if you have time!!!
As always, I have my cell, but I may not answer depending on where Jadon is, or if we are busy with him. This will always be the best place to check. I am trying to get online or on my email once a day, but if I dont call right back, or respond right away, know that I have received your messages and appreciate your thoughts and prayers!
Thank you for all the love and support you have given us!!!
There are two "Adopt-a-Room" suites in on the 5th Floor. The rooms are assigned "lottery" style which means that as the current resident is discharged, the names of the other kids in the unit are put in a pot and a name is drawn.
Jim, Jadon and I were here in the resource center last night after dinner. Jim went to "check the weather", as he walked into our room to drop his jacket off there was a note on our white board to ask the night nurse about our big surprise! She happened to see him walk in on her way out of the unit at the end of her shift, so she told him. They came in here and he said, "You have got to see this". I am thinking, they got new labs back and we are in the clear (only I forgot there had been no more labs drawn...). So Sarah took me to the surprise, and I BAWLED!
The room is A.M.A.Z.I.N.G.!!! I took a ton of pictures, and as soon as one of us figures out how to get Day the ability to post them for me they will be here!
Some of the features:
- State of the art equipment (even better then the regular rooms!) - including an awesome bed that has lots of buttons to keep Jadon busy!
- A dining area complete with fridge and freezer
- Computers (of course they arent working, but that has been my luck this week!)
- A computer for Jadon too!
- A HUGE bathroom with a shower that "rains" from the ceiling
- Villeroy and Boch sinks (designers/decorators you will understand this is cool!)
- A 60" plasma tv
- Two 30" plasmas
- AND two 20" plasma control panel/tv's (one is also a computer) for me to control the following: lights (and I am talking LCD color changing, mood altering, cool effects and color lights!), all the tv's, playstation 2 and Xbox, the blinds on the windows, the sound in the room, the heat in the room, the movies, music, etc... the list goes on and on
- A roll out for me (thank God no more stiff blue thing that isnt a chair or a bed - YOUCH!)
- Lounge chairs (not folding or hospital chairs)
- A "privacy screen" so even if the door is open, no one can see the beds!
I know there is more - oh, a TON of storage!!! - but even the pictures cant do it justice!
If you must be stuck in a place like this, it is great to be lucky at the lottery!!!
Saturday, December 1, 2007
This is a copy of an email I sent out that best chronicals this weeks events. My friend Dayna is going to keep this blog up to date for me, but I thought I would get this part on - she will post pictures and updates! :) - thank you Day!
- Tuesday morning Jadon woke up with a large sore in his mouth that looked to be a blood blister I took him in to STJMC to have it looked at.
- The doctor was not sure what it was, so he decided to err on the safe side and remove it and send it to pathology. He was having trouble with the bleeding, so he added a few extra stitches.
- He sent us home with no after care (other then to return on Monday to have stitches removed), but said the swelling would be down in a few hours
- We left for the cities for the funeral (understanding that he would be ok)
- My aunt rode in the back seat with him, and was wiping saliva filled blood the whole trip
- The swelling got worse, but we atoned it to the novicane wearing off
- By the end of the visitation he was border line lethargic but also very sleepy, his lip was 100 times its normal size (imagine a golf ball in his lip), and he was still bleeding
- We took him to the hotel and cleaned it up thinking it looked better we sent him to bed with Motrin
- At midnight he was covered in blood
- We took him to the ER at Fairview Ridges
- His platelets were "under 10,000" (normal is 150,000 - 400,000)
- Jadon and I were sent via Ambulance to Childrens Hospital
- His platelets when we got here were 2,000
- Since then he has had a platelet transfusion, IVIG, and a TON of morphine, Amicar (a platelet glue - basically makes the few he has more sticky), and antibiotics
- His platelets after the transfusion were up to 6,000 where they still are now.
- Grandpa has been great (as has Grandma Char) - he has taken good care of all of us!
- His platelets have stayed at 6,000 which is not good, but also not bad, because his body is not rejecting the new, and not eating up what was given him. He "should have" gained at least 10 times what he did with the transfusion.
- They believe that he has ITP (Idiopathic Thrombocytopenia). But they are not certain.
- The Amicar is helping the wound in his mouth clot, but he has developed a hematoma in his cheek, so he has a lot of swelling, and alot of blood built up inside the mouth.
- They cant do surgery on the hematoma until his platelets go up
- They arent sure they should do it even if they do go up
- We started Mouth Cares today. They are not easy, and Jadon is not very cooperative, but we will keep working on them
- We will be here at least through the weekend, but we are not sure what steps are still to come.
- They are not committing to anything - they are taking everything moment to moment.
- The good thing is, he finally let us get him out of bed this afternoon and have played in some of the play areas.
- He even played Thomas on line!
- UPDATE ON MOUTH CARES: Our awesome nurse Erica got a HUGE clot off the side of Jadon's mouth - he looks so much better now!
- Jadon's labs are back from this morning, and his platelets are down a little from yesterday - they are now at 5,000
- The doctors are not too concerned because anything between where he has been and 10,000 is all considered emergent, and would be treated as he is now.
- The only "new information" is that if his platelets dont come up by Saturday, he will be scheduled for a Bone Marrow Biopsy.
- This is done to rule out a few major illnesses, and confirm that it truly is ITP we are dealing with.
- The only thing that will change this would be if his counts went way up tomorrow and stayed up on Sunday and Monday.
- Jadon has been more active today. He played quite a bit, even made sand art with the Child Life Specialist
- He rode a tricycle around the unit a few times and has been running daddy ragged chasing after him with his IV Pole.
- We have finally started liking eating a little more - of course all food is through a syringe - but since our favorite yogurt is TRIX, and they have it here, we are good to go!
- Great Aunt Chris came to visit tonite. She stayed and watched Polar Express with me so Jim and I could go to dinner.
- Aunt Denise and Uncle Steve came too, so they went and ate with us.
- It was nice to leave for a while, but even better to get back!
Saturday: "let it snow, let it snow, let it snow"... we are getting upwards of 10" today... OY!
- Nothing has changed.
- Platelets are still at 5,000
- Hemaglobin is the same
- So at this point we are scheduled for the Bone Marrow Biopsy at noon on Monday.
- We got to go downstairs and watch some performing dogs this morning - Jadon didnt like it much, but it was an awesome distraction for us!
- Jim took the semi home yesterday and brought my jeep back, so unfortunately we are committed to him working Monday.
- My Dad is taking Jim and Mantha home tomorrow so my Jeep can be at his work ready for him when he gets off work.
- Mantha will stay with our dear friends Josh and Melissa - and of course, Mantha's best friend Bailey and her sister Shelby!
- Dad will come back up as soon as Mantha is off to school on Monday so he can be here with me while Jadon is in surgery.
- Jadons cousin Lainey came to visit this afternoon! They played "Trouble", and he pulled her around the unit on a cart attached to his tricycle. Try hauling a pole around following a trike!
- Uncle Teddy and Auntie Theresa were here too (with Lainey)
I do have my cell with me here at the hospital - if I dont answer, or call right back it is because he is awake and we are trying really hard not to talk to much about it in front of him. This will be the best place to get the latest updates - thank you Day!
We appreciate any and all prayers!!! We want to get this little boy home healthy and ready to celebrate a childs favorite time of year!
Thank you for your support!!!
As most of you know by now, Lori & family were to head up to the Cities on Wednesday morning for her Step-father, Bruce's funeral. Tuesday morning, J woke up with some blood in his mouth - I am going to paste an email from Lori about the sequence of events:
"Tuesday morning Jadon woke up with a large sore in his mouth that looked to be a blood blister I took him in to STJMC to have it looked at. The doctor was not sure what it was, so he decided to err on the safe side and remove it and send it to pathology."
"He was having trouble with the bleeding, so he added a few extra stitches. Sent J. home with no after care, but said the swelling would be down in a few hours. We left for the cities (understanding that he would be ok) My aunt rode in the back seat with him, and was wiping saliva filled blood the whole trip.
The swelling got worse, but we thought it to the novicane wearing off .
By the end of the visitation (for Bruce) he was border line lethargic but also very sleepy, his lip was 100 times its normal size (imagine a golf ball in his lip), and he was still bleeding. We took him to the hotel and cleaned it up thinking it looked better we sent him to bed with Motrin
At midnight he was covered in blood. We took him to the ER at Fairview Ridges
His platelets were "under 10,000" (normal is 150,000 - 400,000). (Side note from Dayna: platelets are a component of your blood - their job is to help blood clot, anything 10,000 or under is considered emergent)
Jadon and I were sent via Ambulance to U of M Childrens Unit on the East Bank of the Campus His platelets when we got here were 2,000
Since then he has had a platelet transfusion, IVIG, and a TON of morphine, Amicar (a platelet glue - basically makes the few he has more sticky), and antibiotics
His platelets after the transfusion were up to 6,000.
His platelets have stayed at 6,000 which is not good, but also not bad, because his body is not rejecting the new, and not eating up what was given him. He "should have" gained at least 10 times what he did with the transfusion. They believe that he has ITP (Idiopathic Thrombocytopenia). But they are not certain. They cant do surgery on the hematoma until his platelets go up, they arent sure they should do it even if they do go up They are not committing to anything - they are taking everything moment to moment.
The Amicar is helping the wound in his mouth clot, but he has developed a hematoma in his cheek, so he has a lot of swelling, and alot of blood built up inside the mouth.
We will be here at least through the weekend, but we are not sure what steps are still to come.
The good thing is, he finally let us get him out of bed this afternoon and have played in some of the play areas. He even played Thomas on line!
(this is Dayna again)
Friday: J's platelet count is down to 5000 - which in the medical world is considered no change. However, they were hoping it would go up. At this point they are trying to figure out a next step, this appears to be a Bone Marrow Biopsy to check to see the J is Producing platelets. Both Lori and Jim say J looks better then he has.