Thursday, March 28, 2013
Friday, March 15, 2013
Thursday, March 14, 2013
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.
Tuesday, March 12, 2013
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
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
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...
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
Monday, March 4, 2013
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:
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
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...
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....