Tuesday, February 26, 2013

Tuesday, February 26th

Monday was a good day for Ian. He got out of the room again and got to play with one of the volunteers. Here he is playing SORRY in the pod with the you can see by the corner...lots of equipment goes along with him.

We found out that Ian's number for Model Wavier has come up. Model Waiver is a branch of Medicaid, based on medical need not on financial need. This is something we have been working on since July. His spot opened up at just the right time, Model Wavier will be his secondary insurance and will hopefully cover what blue cross blue shield does not cover.  Yesterday, I have my meeting with the care coordinator to start all the paperwork.

Last night was my night with Ian and we watched "Mars Needs Moms". During the credits, I look over and there is Ian's head bobbing up and down...he was dancing. Loved it, priceless, when I said something to him he stopped. Both of us started laughing...those are the moments I love.

Ian's swallowing study was this morning and it went well. It accomplished two things. First, it got Ian out of his room for a little bit. Second, it told us Ian can start to eat again. Yup, he passed the swallowing actually looked a little bit better then his last one. Now we wait for the doctor to change the orders so he can start eating. They are planning on starting him back on a regular diet for all 3 meals. We will need to figure out what his caloric intake is with food so we can make sure he is being supplemented correctly thru his g-tube.

I did my 2nd trach change today, it went well. I was definitely nervous in the beginning but once I got started and Ian's nurse pulled out the trach, I just put the other one more to go for me and two more to go for Brian.

One final update to add to Ian's already busy day. I arranged for Ian to have a visit from one of his friends from school. ....Susan thank you so much for bring Alex to come visit....both boys loved it and I am looking forward to seeing Ian with his friends again soon. 

Sunday, February 24, 2013

So How Are You Doing?

Over the years, especially the since January 6, 2013 many people have asked how we are doing...lately my standard answer is "I know where my head, my feet, my son, my daughter and my husband are. If you ask me about anything else, I most likely don't know." 

The past few weeks have been especially difficult for me...I am watching my son go thru things I never imagined. He has more strength and courage then I could imagine. Seeing the fear in his eyes, has been heartbreaking. There is no way for me to make it go away, in some ways no way to comfort him. I have watched some of the sadness and fear turn back into joy and spunk. 

I am watching my daughter, from a far, continuing to take each day as it comes. Tangoing with her just so I can find out what she did in school that day. Knowing she is so exhausted that anything can send her over the edge; most of those things are typical things any almost 10 year old goes thru, while others are not. In many ways, she is very well adjusted, however, in many ways she is struggling with things many will never experience in their lives, let alone a girl should not have to experience with her twin brother. Those are things I can not make better for her.  

I am watching my husband...well watching....we are two ships passing. On a good day we may spend an hour in the same room. On other days we see each other in the hospital parking lot switching places, one of us at the hospital the other going to work and taking care of Becca. Talking on the phone at night...maybe happens a couple times a week otherwise its texting for us. Then there are the nights when one of us is to tired to do either and have fallen asleep before we talk or text. Brian and I have had some very difficult conversations over the last few weeks...some of them with each other, some with family, some with doctors, some with friends, some with the kids. I know there are more difficult conversations to have. We have many things to figure out before Ian can come home, many of those things are out of our hands, while others are things we need to do around the house. For those of you who know us well...this is hard for us, we are planners ....both of us in different ways so having to wait on others to make decisions before we can move forward...not so easy.  

As for me, my emotions have been up and down to anywhere in between, depending on where we are in our journey towards our ever changing normal. Some days I am drained; emotionally, mentally and physically. So how do I do it....I just keep moving forward with the same strength and courage Ian, Becca and Brian have. I think none of us realize it but we are thriving off of each others strength and courage and for that the four of us are blessed. As well as thriving off of all the love and support we have gotten over the years, especially the past weeks.

Thank you all for being a part of our village and our ever changing normal.

Weekend of February 23rd

Ian and Becca talking about their next move in Battleship.

This weekend was low key for Ian as far as therapies went ...he had none. We did have lots of visitors this weekend. On Saturday, Uncle David and JoAnne came to visit at the same time Nana and Pop were there.  Becca and I were there on and off during the day as we had haircuts; boy they were needed. Later that evening a special thanks to Daddy, Aunt Susan, Devin and Becca for coming back to visit because Ian was bored.

Ian and Mommy wearing hats for Purim.
Sunday was another busy day for visitors Aunt Jill, Uncle David,  Ben and Logan came to visit and brought a wonderful Spiderman comic book. We can't wait to read it. We also got to play mean game of Sorry...did not get to finish it. When they first got there, they had a hard time finding us....why you ask - Ian got out of the room was not an easy task....lots of things to move around and hooking up portable machines, but priceless to see the smile on Ian's face as he saw the rest of the floor and the pod. Nana and Pop came back and got to hang out as well as did Aunt Susan, Devin and Kiki was great to see all of them together and playing, battleship was game of choice this afternoon. We also had two visitors from Chailife for Purim, Ian also had fun visiting with them as well.

Ian and Pop doing what...who knows, only the two of them do.

Friday, February 22, 2013

Friday, February 22, 2012

So it's been a few days since I have really a been on a computer....besides for work...this week has been good, a few minor bumps in the road. Ian did some more eating, potato chips at that...and we know he loves his chips. Some mornings that was all I could get him to eat for breakfast. Tuesday evening, I did a trach change....not the most pleasant of things to do but it has to be done in order for Ian to come home....

Well on Wednesday morning, Ian's saturation level's dropped to the high 90's. They worked for a while to try to bring them back up and could not, so they increased his oxygen levels from 21% to 28%. That brought his saturation levels back up to 100%. Over the past few days they have brought his oxygen back down to 24% and will continue to watch the saturation levels. They are going to work on getting him back to 21%. Because there is a possibility Ian could be silently aspirating, they have stopped all eating and drinking by mouth until his swallowing study, which is scheduled for next Tuesday morning. Hoping for a good swallowing study...but only time will tell. 

Brian did a trach change this afternoon, so that means one for each of us...only two more for each of us... Ian has been signed off to have them done twice a week for training purposes. Some time next week, the case manager will look at dates to come up with a tentative discharge date; it will not be written in stone but a date needs be come up with; for a few reasons:
  1. in order to get things started with the insurance company authorizing nursing a date needs to be determined. 
  2. in order to things started with some of the medical equipment Ian will need when he comes home a date needs to be determined.
  3. Brian and I have many things we need to do in order to get things ready for Ian to come let the games begin for our "new normal" to start to come together.
Ian was given his speaking valve to keep in his room, along with the protocol; twice a day for an hour at a time. Eventually he will be able to use it more and more, but that will take time and practice. 

Our Tobii rep came to Mt. Washington to work re-calibrating the eye gaze. This took a little bit but once things were situated Ian did great. One would think the eye gaze would be easy to use but Ian is using his eye muscles in a way he is not used to...lots more work and practice to do with it but we know Ian will get it. 

You never know what the body is doing or what is really going on within the body. When Ian was admitted to the hospital on January 5, 2013 we found out that his carbon dioxide level was 21. A normal carbon dioxide level should be between 35 and 45. To low or to high are bad. Usually if these levels are low it indicates that oxygen to the tissues of the body is reduced. It can mess with the pH of the body, cause spasms, asthma attacks and migraines, plus many more things. This could be the explanation for many of the things that have been going on with Ian...not all but...  With the trach and vent, Ian is getting more of what he needs. When checking the CO2 level is between 35 and 45. So we keep moving and doing what we are doing. 

This week was also a good week for Becca, she got her braces off. This was something she was looking forward to for a long time. So it was goodbye braces and head gear and hello retainer...oh wait did I mention that she picked bright orange for the color of her retainer color. 

So we continue to move on...doing what we need to do in order make our family ours....and bring everyone home.

World Rare Disease Day


World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families. Please join Brian, Becca, Ian and I, as well as may other patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts to raise rare and genetic diseases awareness. The Blue Denim Genes Ribbon™ is a perfect universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice. I have Blue Denim Genes Ribbons to share...please let me know if you would like one to show your support for Ian as well as all the others (if 30 million Americans live with a rare disease {1/10 of the population} and 1/3 {10 million} of them it took 5 years or more to get a diagnosis). For more information check out one of these two sites:
World Rare Disease day

Wear That You Care, Global Genes

Monday, February 18, 2013

President Weekend News

The weekend was a good one, relaxing in many ways. Friday night, I got to have a date with Ian...we spent the night watching movies and holding hands. Brian and Becca got to play Harry Potter Clue with one of our who done it...when asked they could not remember, nor could they remember where but did remember it was with the broomstick. 

Saturday and into Sunday morning, Becca and I went cabin camping with girl scouts. It was a change of pace for us...cold, lots of laughing little girls who did not want to go to sleep. During the campfire ceremony, the girls participated in a flag retirement ceremony...if you have never seen one or participated in one, it was amazing. Interesting to hear the reasons behind why and how the flag is cut before burning it. Watching the fire as the flag burns to ashes, took me to a place of solitude (at least for a little bit). As did the view...

Brian and Ian spent Saturday hanging out. Ian had speech therapy during which he got to eat half of a you ask him it was the best donut he had ever had. The rest of the day, I think they just chilled out. Brian did spend some time having to suction Ian, and had to do an unexpected trach change. Brian assisted, which is one step in getting him to actually do it. Brian also did a trach tie change. I have watched a few but have not done any yet. So the training is coming along...

Sunday morning, Becca and I went straight to Mt. Washington to see Ian and Brian. When we got there, they were both still in bed...not quite ready to start the day. Ian was a little upset as he thought I was bringing his battleship game with us when we came up...well we did not go home so no battleship game came with me. Ian had a visit from Uncle Eric and Noah....they did not get to spend as much time with Ian as we all would have liked, but a bath and some chest physical therapy got in the way. Once they left so did Brian and Becca, and in came Nana and Pop...Ian was up to his self with them, playing games and getting Nana to hit Pop on the head when he misbehaved. Somethings are already back to normal....our OLD normal. They did not stay long as both Ian and I were tired and a nap was needed. After our naps and dinner, Jodi came to visit...Ian was happy to see her. She hung out with me for a while as Ian was more into watching TV...typical 9 year old.

Today is Presidents Day so no school for the kids. Becca slept at Nana and Pop's last night, did great and Pop even made her breakfast. Then Becca and Nana came to hang out and spend some of the day with Ian, while I came to work for a little bit and Brian did some work at the hospital. Ian will have speech therapy again later today. He is supposed to get into his chair 2-3 times a day for and 1 1/2 hours to 2 hours. Well he got into his chair around 10AM and did not get out until around 1PM. Oh and as you can see....Brian saved the day...he brought battleship down.

The rest of the week will be more therapies, getting back into the swing of school (how many kids can say their teacher and school work come to them), spending more time sitting in his chair, having a visit from his Tobii rep to work on getting his eye gaze working correctly...and who knows what else. 

Looking forward to the next few days being good ones.

Friday, February 15, 2013

First Few Day at Mt. Washington

The 1st few days at Mt. Washington have proven to be busy ones, good but busy. Ian has done many things, some 1st and some not...

The most important thing that happened was Wednesday afternoon, Becca got to come visit. Visitors have to be 7 or older to come to Mt. no hebrew school for Becca on Wednesday, it was getting picked up by Nana at school and coming to see Ian at Mt. Washington....both kids were extremely happy to be able to see each other and catch up for a little bit. Tango chats have worked wonders while Ian was at Hopkins and for days/nights when Becca can not come to Mt. Washington. Tango chats have also worked wonders for Nana and PopPop, Nana and Pop, Aunt Susan, Uncle David, Kiki, Josh, Devin, Uncle Eric and Noah, Uncle Mike, Jen, Kirsten, Hayden, Gabe and well as some special friends.

Speech therapy has started and with that has come the ability to least a little bit. On Thursday, he had some yogurt and lemonade. On Friday, he had some pureed peaches and more lemonade...only about an ounce each day. He will continue to be able to eat about an ounce each day with the speech therapists until he has a swallowing study done to help the doctors determine if he will be able to continue to eat. Also with speech therapy on Thursday, he started using the speaking valve. He was only able to have it on for 15 minutes. Friday he had it on for about 20 minutes. They will continue to work with him with the speaking valve while here until they feel he can have it permanently.

On Wednesday and Thursday, Ian got into his wheelchair for about 30-40 minutes. This morning, his physical therapists and occupational therapists came to work with him....bright and early (actually for those of you who have been around for a long time....Friday morning at 7:30 is our normal outpatient slot so they came to see him). They worked on getting him into his chair and set up a protocol for Ian to be in his chair daily 2-3 times a day gradually increasing the length of each sitting. I am not sure how often they will be coming to do therapy with him. I will have to look in to that on Monday. I am not sure he will get much physical therapy or occupational therapy while here but we will see.

On Thursday, Ian had a special visitor.....Yuba the therapy dog....

and as you can tell they became instant friends. Yuba, was quite happy getting up on Ian's bed and resting...Yuba came back to visit today, while Ian played some games on the IPad....oh wait, Yuba took a nice nap.
Yuba did make one more visit on Friday early evening to say good night to Ian and to tell him to have a nice weekend. Yuba has off on the weekends and on we will not see him again until Tuesday. I know Ian will miss his new well as we will need to wash all of Ian's blankets before he does get to go home...not sure Joey will be very happy.

Today, Ian started school with his tutor here. She was here for about an hour. They did some math and reading. Being the wonderful parents that Brian and I are, we asked about homework. She said she was going to give him a break since it was a long weekend. Our response....he has had a 6 week break...he can have Ian has homework...

Well tonight is my night with Ian, he is finally asleep, which allowed me to update the blog...he wanted my attention we sat and watched movies, and I got to hold his hand....XOXO....

Now time for me to get to sleep. Rest well everyone.

Wednesday, February 13, 2013

In With the New, Out With the Old

Around 9:30 this morning, my two favorite men took the ride...ambulance ride from Hopkins to Mt. Washington's official rehab and teaching have begun. Well sort of...we have had lots of visitors, most of whom we have missed while at Hopkins and we had some visitors who we had met for the first time. Some of our visitors got smiles, while others got raseberries. The plan...well we don't completely know yet but it is being worked out along with somethings we will need when we go home.

Monday, February 11, 2013


Well Ian's transfer is not happening as early in the week as we were hoping....we were told a little bit we will just have to hang out on the 10th floor for a few more days....

Sunday, February 10, 2013

Weekend Update

This weekend was quiet and calm, just as we hoped. As stated in the last post, Ian was moved to the 10th floor on Friday night around 6:00...he adjusted well and was very happy to be in another room. This is a picture Brian took when they arrived to his new room.

Friday night, I went out with some was wonderful, a very nice break for "reality", a drink was had and some very good food and good company. Thank you. Saturday, Brian and I got to go out on a "date"...we went to see Beatlemania, while Nana and Pop sat with Ian...I know I don't need to say it but thank you. Becca spent the day, well actually most of the weekend with Aunt Susan, Uncle David, and kids...thank you as well. Saturday night, Brian got a break and went out as well for a few drinks...thanks...Susan...Sunday, Ian and I had a lazy morning...well more me then him but that is okay. Once we were up and ready for the day to really begin...we did his homework and then played on Webkinz World to decorate Hero's room as well as play some games with him. Ian decided that Hero's room needed to be a football theme, we had a great time playing. Afterwards, he spent the rest of the day with Brian while Becca and I had dinner with friends and went to her lacrosse clinic...then it was home and everyone getting ready for the week and the hopes of our "new" normal starting with a transfer to Mt. Washington for rehab. We don't know if it will definitely be happening tomorrow since discharged planners don't work on weekends. Most of the transfer depends on bed availability and transport availability, so we will go to sleep and "HOPE".... remember...

Friday, February 8, 2013

10th floor, he has arrived

Ian was moved to the floor about 15 minutes ago. One more step closer to home.

Holding Steady and Moving Forward

We have been holding steady for the past few days...making some good changes more so then what Brian filled everyone on...

On Tuesday we were watching the Ravens parade...Ian was waving to Ray well as the other players as they were being shown on the TV.

They have been doing sprints on his vent settings to get him back onto some stable settings. They started with just 2 hours to see how he would do and have continued to do them more and more often. They are now only increasing his settings when is sleeping. His vest was started on Tuesday but only with being on morphine about 
30 minutes before hand, now he is able to use it with out the morphine...this is something he was using at home twice a day but they are using it 3x's a day.

The vent was changed over from the hospital vent to a home vent (this is a LVP), in order to get him closer to moving to the floor and then to Mt. Washington. On Wednesday, his trach was changed, he is in a non-cuffed trach which has enabled him to start talking a little bit. He has come off of the dex but started on clonidine to help with the withdrawal symptoms from the dex. As of today, he is off of the oral clonidine and only on the clonidine patch which they will work on weaning him from over the next few weeks.

Wednesday was BINGO...and we know it will be our last one...bitter sweet. Ian did well and won twice...a webkinz horse which we have named Hero and Lizard Techbot (this is a Mega Bloks from the Amazing Spiderman). Ian and I had fun playing BINGO....I used his arm as a tape holder so I had easy, quick access to the tape to put on the card, he was a good sport about it. 

His x-rays have been good, each day remaining stable from the day before or getting better from the day before.

We are waiting to hear when we will be moved to the floor, I think looking at tomorrow, with a transfer to Mt. Washington on Monday. 

Looking forward to a quiet weekend...

Tuesday, February 5, 2013

What a Difference a Week Makes or Thereabouts (By Brian)

Ok maybe not necessarily a week exactly but close enough for me and for my purposes of writing another post.  If you really want to know I guess it should say...What a Difference 8 Days Make.  Again, as many, if not all, of you know on February 1, Ian had his tracheostomy surgery and it went extremely well.  So well in fact, that after what seemed like only 15 minutes to me but I know longer, the doctor comes walking out saying he's done.  I was absolutely stunned and floored but was like ok, you sure you didn't want to take more time, lol.  Anyway.  within 24 hours I swear I saw the life come back in to my little boy's eyes.  Those eyes that only 8 days ago I said "were full of sadness and despair."  It is amazing how something as complex yet as simple as removing a breathing tube (complex) and tape (simple) from Ian's face had seemed to change his entire outlook and attitude.  He was smiling, laughing and yes even mouthing words.  I was not alone with the thoughts of where has this boy been for the past three weeks.  Well we all certainly know the answer to that....basically to hell and on his way back.

So that brings me to tonight.  No, this is not going to be another Feelings of Helplessness post because I have been there and done that.  In fact, my outlook on this whole experience, yet not a pleasant one by any stretch of the imagination, has certainly changed since last Friday the 1st.  How could it not with seeing the huge change in Ian.  His laughter, his eyes and his brightness are absolutely infectious.  And to not be happier is not paying attention to him while you sit here.

Ok, enough rambling.  So it is my night here at the hospital with him which everything is going fine and well.  During the day, Respiratory Therapy (RT as we call them) changed out his ventilator to another kind of vent called a LapTop Ventilator (LTV).  This LTV is basically the one we will be using at home when Ian finally does come home.  The reason for the change is because the PICU needs to get Ian to a baseline setting on this vent before he can be moved to the general floor.  So they need to give it a few days for him to be on it to generate this baseline.

Anyway, shortly before I sat down to write this, Ian was talking to Becca and Marci on our cell phones to say good night and such.  He didn't seem to be in a horrible mood but just seemed sad for some reason.  But when I asked him he said he was fine.  So after getting off the phone, I had a talk with Ian.  I was standing over him and looking him in the eyes and him me.  I asked him if he really was ok.  I asked if he was sad, happy, did anything hurt and so on.  He said no to all of that.  I asked if he was upset because he had the trache and he said no.  I even went as far to ask if he was mad at mommy and me for telling the doctors to put the trache in and once again he said no.  So I went on to tell him that he still has the right to be sad and upset about everything if he wants.  But no matter what he goes through he will always, and I mean ALWAYS, be the same little boy every has come to fall in love with from the minute they meet him.  Told him that mommy and daddy were not giving up the fight so long as he wants to keep fighting and of course we all know he does want to continue the fight.

So with all that, Ian looked up at me, puckered up his lips and held his arms out to me for a hug.  I haven't gotten a hug from my little man in a long long time and I most certainly was not passing up the opportunity to give him one and not a short one either.  After, I looked down at him again, told him I loved him very much and gave him another kiss.  He replied back, I love you too.

That is why I titled this post What a Difference a Week Makes or Thereabouts.  Remembering back to those Feelings of Helplessness to the feelings of optimism and joy is something remarkable.  Our Ian, our little trooper and MY hero, not even Spiderman can get close to, is coming back to us.

Sunday, February 3, 2013

A Win

A very happy Ian...Ravens won the Super Bowl.. .

Super Bowl Sunday.. February 3, 2013

The past 2 days have been good for Ian. He is adjusting to the trach very well...his x-ray from this morning shows a totally clear left lung. Yesterday, they started to decrease the dexmedetomidine (used for sedation). They are doing this slowly due to the withdrawl, he is also doing well with this. After the surgery, they started him on morphine to help with the pain; the only time he really has needed it was when they are moving him. Over the next few days, they will start to decrease that as well...they don't want decrease that yet until he is off the dexmedetomidine. They are planning on decreasing the pressures on the vent for a little bit today and then put them back up later on today, so he won't have to work as hard when he's sleeping. 

Ian has been laughing, giving raspberries, and mouthing his needs to us. They took the ND tube out when they placed the trach and he has been getting his feeds thru his g-tube again. That is also going well.

We know we have most of this week in the PICU....

For the Super Bowl, Brian and Ian will watch it at the hospital Brian said, can't break tradition...he has been here for the playoff he will be here for Super Bowl. Becca and I will be watching some of the game at Jilly's, most likely until half time before heading home.

Let's Go Ravens....bring it all the way home for Ian....

Friday, February 1, 2013

Ian and his 2 seconds of fame


Trach Surgery and Mickey Tube

Well it's over....Ian did a great job with the surgery...the breathing tube is out of his mouth as well as the ND tube is out....the trach and the mickey button are in. It is nice to see Ian without all the tape all over his face...we have even gotten some smiles from him in between him falling back to sleep.