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Thursday, March 28, 2013

Quick Update

For the past few days, I have wanted to post but things have been busy with us trying to adjust to a "new normal"; at least trying to figure out what that will be. It has been hard with the holidays and the spring break for the kids. Brian and I along with the nurses, doctors and respiratory therapists have been working hard to figure out the amount of humidity Ian needs thru his vent when using the heater and the HME; this is challenging as it seems to be different depending on where he is as well as the humidity in the air.

Seders have come and gone....everyone came to us which made it easier for Ian and getting his treatments. This was not an easy task for others....so thank you.

Last night we had our first major outing as a family thanks to Casey Cares Foundation. We went to see the circus; the smiles and laughter from the kids was priceless. Check out the kids with the ring master.
The theme of the circus was the dragon along with its characteristics of "strength", "courage", "wisdom", and "heart". It is amazing how those characteristics are so fitting of many things in our lives.

Have a good night all.

Friday, March 15, 2013

Home Again

WE ARE ALL HOME AGAIN UNDER ONE ROOM....SLEEPING...WELL AT LEAST THE KIDS ARE. EVERYONE SLEEP WELL, BRIAN AND I ARE GOING TO TRY OUR BEST TO DO THAT TONIGHT.

Thursday, March 14, 2013

PICU Day 1

Yesterday was a rough day for many different reasons beyond ending up in the ER....

Ian was transferred poorly yesterday and  as a result his right leg is broken. Ian is in a immobilizer and will be followed by outpatient. For many reasons, Ian's bones are brittle and as we were told today he needs to be treated like "china".

Now for the ER/PICU....after dinner last night, Ian was back on the sofa and he began to desat, I had Brian come into the room and he immediately put Ian on oxygen. This did little to help him recover, so we went across the street to get our wonderful RT neighbor...thank  you Mark....he was great. Took over, began bagging Ian while assessing everything else that was going on. For many reasons, 911 was called. Once they got to the house, Mark went to get our other neighbor, Danielle to cover Becca (who had gone upstairs after seeing more then I would have liked her too, however, eventually it was going to happen and she was going to see things)...thank you Danielle. EMTs stabilized him and it was off to Hopkins. In the ER, Ian desated a few more times, however, it recovered much better then at home....Ian remained stable last night and today. He is back down to 21% oxygen...as long as he has a good night they are talking about discharge tomorrow.

Again, a very special thank you to my wonderful neighbors, Mark and Mary, Tim and Danielle, Stephanie and Ellen....we could not have gotten thru last night with out you.

Here is to my superhero having a good night and coming back home tomorrow...XO and sleep tight.

We Are Back ...

In the PICU at Hopkins.  Right now Ian is stable. We are waiting for rounds to figure out more. I will update later when I can.

Tuesday, March 12, 2013

After 10 1/2 weeks

WE ARE HOME!!!

Its has been a hectic day, but all in a good way. Ian was all smiles in the car on the ride home. He said he was happy and enjoying being in the car.

We were about 1 mile from home and Ian asked if we were almost home, yes we told him yes and just as only Ian can he said "YES"!

As I was signing discharge paperwork today, I realized it was the 12th...well thinking back 10 years ago. Ian also came home from the NICU on the 12th of the month.

Monday, March 11, 2013

According to....

Becca tomorrow is gonna be a happy day. Room is ready. Equipment all charged. Now time to get some sleep so we can get up in the morning and bring our super hero home.

Thank you all again for all the love and support over the last 10 1/2 weeks. Tomorrow our "new" normal begins.

Saturday, March 9, 2013

Working Hard

2The past few days have been extremely busy for Brian and I, we have had hours of training, been snowed in at home and the hospital (with not much snow but everything was closed), had many phone calls arranging things. The other night we had Ian's new bed along with some supplies delivered to the house, 13 boxes of medical supplies along with 3 oxygen tanks and an oxygen concentrator. (Ian is not on oxygen at this time but we have to have it in the home in case he does need to go on it.)

Ian has also had a busy few days, continuing to stay strong, had visitors, school, therapies. He also got to take a few breaks from his vent, so far about 3 times he has had 5 minute breaks from the vent. Ian has done great without it and has smiles from ear to ear but he is also happy to go back on. So take a look at what is missing...

Ian has been doing his part to come home...continuing to work hard. Having his school work come to him thru home and hospital, watching TV and movies, meeting new friends, going outside into the garden. 

The other day Ian was put onto his home vent, they like for kids to be on them for about 72 hours before coming home. Ian is doing great with it. I am sure there is more we have all done but it all seems like a blur...

Becca has been working hard as well. She has been helping to get things ready around the house as well. She has been a trooper over the last 10 weeks, going from place to place, not having Brian or I around as much as she would like (this is one major issue regarding having a sibling with special needs). Not only is Ian my hero, so is Becca. 

We have a busy week ahead....discharge meeting and homecoming!!!!!!!


Tuesday, March 5, 2013

A Visit With...

Just to make sure everyone can see... Dr. Raymond...is who the visit was with. For those of you who don't know, Dr. Raymond was Ian's neuro-geneticists since he was 2 years old. Well in December, Dr. Raymond relocated, for him this was great, for us not so great...onto the next picture before sharing the rest of the story.

The wonderful woman in this picture we met thru Dr. Raymond, she was his genetic counselor...well she has not relocated....lucky for us. After going thru the sequencing testing with us and delivering the news about the VRK1 mutation, she has stayed in our lives for many different reasons. Well today she came to visit Ian at Mt. Washington. While we were talking, Ian said that Dr. Raymond came to visit him today...this was news to all of us. So I tried to find out from him if any other adults were in the room when Dr. Raymond stopped by. Ian could not remember, that should of been our first clue that Dr. Raymond really did not come to visit. Well Leila texted Dr. Raymond to find out if maybe he was being sneaky and did not tell some people he was in town....well Dr. Raymond was not being sneaky...he indeed did not come to visit Ian but we decided the 3 of them should be together again...so DR. RAYMOND this one is for you....we miss you and hope you are doing well in your new home....to both Dr. Raymond and Lelia, thank you for coming into our lives and for never giving up until you found out what was going on with Ian....we are looking forward to our next visit with you both.

Monday, March 4, 2013

Weekend Update

Marci asked me to provide a quick weekend update to everyone that follows here.  It was yet another busy, fun filled weekend for all of us.  Saturday Ian got to spend most of the day with Nana and Pop as they were gracious enough to sit with Ian while Marci and I got some not only much needed time together but allowed us to get started on making room for all the new equipment that Ian will need upon his return home.  Also thanks to David for helping me move some things out of the house to our friends house to make the necessary room for other things.  And thanks to Jill and David for allowing Marci and I to "rent" that little corner in your basement.  Feel free to use a bed or two or three was it that we brought over...lol.

Yesterday brought a wacky and crazy day for us here.  The morning was spent with our friend Sid who brought some special items for Ian.  Sid went to the Super Bowl and brought back some very cool items just for Ian.  I think one of my favorite things was the Super Bowl ticket holder that Sid actually put a family picture in to.  He alsot brought other items for Ian such as some t-shirts, football sticker book, car flag (for his wheelchair I suppose once he starts driving again) and Ian's very own Super Bowl program.  I was glad to see that because he has wanted to see mine and there is no way I am breaking the spine on it.  That baby goes right in to my collection with the other Super Bowl program.  Here is Ian with all his Super Bowl goodies:



Also yesterday Ian had a great time with Uncle Mike, Jen, Kirsten, Hayden, Lucas and Gabe as they came in to visit with Ian now that they are allowed.  At Mt Washington, the age limit is 7, whereas at Johns Hopkins you had to be at least 16.  Seemed like they all had a great time together.  Thanks for coming to spend a little time with us.

However, I would have to say honestly, the highlight of the day was the fact that our son has joined a motorcycle club.  If any of you remember, last year during the summer a friend of ours through cub scouts was able to arrange for about 20 members of his motorcycle club (MCV - Motorcycle Club Five) to come over to the house.  We thought that was the most amazing and special thing anyone could make happen for Ian.  However, they out did themselves this time.  They came, about a dozen people, out to Mt Washington even in the cold and brought Ian his very own vest with the club's cuts (cuts is what they call the clubs patches everyone wears on the back of their jackets).  So as of yesterday afternoon Ian is now an honorary member of MCV. 

Ian in his MCV cuts:




As The Journey Ends - Brian

As Ian, Marci, Becca and myself prepare ourselves for the end of this long, emotional, confusing, aggravating and arduous journey, I cant help but think back to when this whole thing began.  January 5, 2013, yes over nine weeks ago, Marci and I brought Ian in to the ER at Johns Hopkins hospital because we couldnt clear the secretions out of his system.  So better to be safe than sorry.  It turned out the doctors wanted to keep him overnight for observation.  Well we all know where that got us.....a nice long stay in the PICU.  Followed by rehabilitation at Mt Washington Pediatric hospital. 

Looking back over all these weeks I cant believe all that Ian has fought through.  As stated in previous posts, he basically went to hell and came back.  However, it seems that when he came back he came back stronger and feistier than ever.  But most of all, he gave us more hope to know that eventually we would be bringing him home.  Since his trache placement, Ian has been his bright, shiny and laughable self.  Yes his speech is still soft if not softer but thats ok.  I'll gladly give that up over anything more any day and twice on Sunday. 

So here I currently sit with Ian at Mt Washington, in what is to be hopefully our last week.  Thats right everyone, we have a tentative discharge date of March 12.  However anything can change with that date but we are hoping nothing will.  As the days go by over the next week though it is crunch time for Marci, myself and all the other care coordinators to get everything set up.  We are going to have a very busy week.  Starting tomorrow Marci and I will be meeting with Pharmequip (Johns Hopkins DME company) to conduct a home assessment for all the necessary equipment that we will be bringing in to the home.  Also, begins the training we will need on how to work Ian's ventilator..  We have about three days, 2 hours each day, of vent training.  Then on Friday the chaos begins.  The arrival of all of Ian's medical equipment, peripheral supplies and such.  I have moved Ian's bed out of his room because he will  now be using a hospital bed, plus his closet is in need of a serious overhaul because we need a place to store everything else.  No matter, we will certainly make it fit.

Now on to the heart of the post.  I am sure I can speak for Marci as well here as I say a HUGE GINORMOUS thank you to everyone out there that has, in some way, provided support to not only Marci and I but to Ian and definitely Becca as well.  To our families, no amount of thanks, hugs and kisses could ever express our gratitude for all that you have done.  From the countless hours spent just sitting at the hospitals with us, to texting and checking in with us at least every other day.  Without your support I am not really sure if Marci and I could have handled this alone.  This definitely not only shows us but should show everyone what family is all about.  True we may not stay in touch as often or see each other as much as we would want but when push comes to shove family is what it is all about. 

Now to all our friends.....you are all as close to family as one can get.  Through these trying times, day in and day out, you all have been there to support us and lift us up from the darkest depths.  When things were at their bleakest, our friends rallied around us and did amazing things.  Not only were you all there emotionally for us but they way you came together to get things for us and for Ian is just amazing.  I am in total awe of everyone.  Without asking, without hinting and without knowledge at times, our friends pulled off some wonderful feats.  There are certain individuals out there who deserve my complete and total heartfelt thank you.  You organized things such as an online fundraiser and a fundraiser at a restaurant just to help us financially.  I have always known such people existed in this world but I never imagined I would be the reipient of such generosity.  But then again, I never expected to find myself in the situation we are in.  But even so, I cant say enough about everyone who gave, sent well wishes and so on to really express how much we care about all of you.

I could go on and on about everything that was done for us over the last 9+ weeks but then I would eventually just repeat myself and ramble on and on.  There is so much to say that I really do not even know how to say it.  I wish we could personally thank each and every individual that helped us during this journey but that would take way too long.  Just know that Marci and I will never forget how you all helped us through this rough and difficult ordeal when things were at the worst to being tentatively only a week away from bringing Ian, our son and my personal hero, home finally.

All we can do now is prepare for what is to come or as we like to call it our "new normal."  Thanks again to everyone and we love you all. 

Friday, March 1, 2013

End of Week 8

For dinner on Wednesday night, what did you have? Just in case you were wondering ....Ian had chicken, rice, carrots, salad with ranch dressing, bread and cookies. He ate like a champ and picked up with his old habits; looks were given to me if I was not moving fast enough for him. Brian spoke with Ian on the phone before bed and when he asked Ian how dinner was, Ian replied GREAT! He has continued to eat and is doing well. While this is going on, the doctors are decreasing his g-tube feeds.

Thursday was a great day. He was up and sitting in his chair for about 30 minutes, then back in bed for about 30 minutes. before getting out of bed again around 11 for some speech therapy. Once that was over he got a visit from Uncle David and Devin. thanks to Uncle David feeding him lunch....he had a great one...oh yea, he went out into the zone (an open area on the floor where the kids can hang out) and then it was a mean game of battleship between team Ian and Uncle David again team Devin. It was then time for group in the playroom. Yesterday was National Rare Disease Day and some of the kids made posters to support it...

And what do you think...produced by Ian....

We have been able to arrange to have a sitter in the room with Ian from 7pm to 7am....the MD said we could have it every night but we decided to do it every other night...this is the start of getting Ian ready for home and used to others being there for him besides Brian and I. On Tuesday night after 51 days, Brian and I were in the house at the same time. Ian said that night was not so good, although the nursing staff said he had a good night. Friday morning when I got to the hospital, Ian was full of smiles; maybe it had something to do with Yuba being in bed with him during OT (did I mention this was at 8:00am). When I asked him how the night was he told me GREAT...yea...now maybe one of the next few nights we have the sitter at the hospital maybe I actually I will have a GREAT night and be able to get some sleep.

Today, was a good day as well. Brian did his 2nd trach change. We both only have one more to do...getting closer to home. We found out today that 4 months of nursing has been approved by the insurance company...each day is a little different on the number of hours depending on his schedule...so we will begin to figure out what we have. I do know our hard hours before we had this hospital stay is still going to be our hard hours as we will not have nursing then, so I am hoping to get "help" from others....interested in finding out more....let me know. Tonight, Brian and I go to meet a friend who I have been in contact with regarding VRK1....they came from North Carolina to meet with our team and to find out what is going on with their son...it was great to finally meet them in person and so happy for the wonderful appointment they had....can't wait for them to get their results....even if it is not VRK1...maybe just answers and that is still okay.

Tomorrow, we are going to begin the process of getting things ready for Ian's homecoming....we know we still have some time but that time will come quickly and with some training things we still have to do; having time to get things ready at home may not be as easy. Hoping it is easier then we are thinking but for some reason, I am sure it won't be. Tomorrow beings week 9 of Ian's hospitalization....