9 Months – that’s how long we stayed out of the hospital.  Not counting minor admissions of less than 3 days 😉  We did have two of those in between.  Ian was in the hospital for the last 10 days fighting pneumonia and sepsis.  While we were in the hospital, I was kindly reminded that a lot of people check this blog for updates.  SORRY – we have been too busy having fun to update!

We had an absolutely wonderful summer.  We went for walks, played at the playground, we even took Ian to the zoo and a birthday party!!  We did a lot of playing on our front porch in the evening where Ian would sit and splash in a little tub of water and Owen would run under the sprinkler.  Aside from his “normal” struggles with pseudomonas, a bacteria that is colonized in Ian’s trach, Ian stayed healthy and we were all happy.

Ian is professional at sitting.  He can turn on his bum in circles and can scooch a little bit side to side.  We are working on pulling himself up to stand and some walking with support in his walker.  He has made significant improvement with putting things in his mouth.  His new favorite is veggie chips.  It is really the only food item that he will put all the way into his mouth.  I think he likes the salty taste.

Last Monday Ian gave us a little scare.  I knew he wasn’t feeling well, but I figured it was pseudomonas.  For this, we do an inhaled antibiotic that usually clears it up for about 10 days and then we have to start it again.  We had switched to a new antibiotic in hopes of keeping it at bay for a little longer and Monday was only 5 days off.  So, I just figured the new antibiotic didn’t work as we had hoped and we started back on the old one.  Monday morning, just as I was walking out the door with Owen for school, I could tell Ian was being a bear.  I quickly helped the nurse do a few things before I left and figured I would be quick dropping Owen off and would be able to get Mr Grumpy Pants calmed down.  Dropping Owen off takes maybe 15 minutes.  As I hurried home, Ian’s nurse called about giving him some of his rescue meds.  These help him calm down so he can breath.  So – I ran home.  Not only was Ian struggling to breathe but he was shaking.  I immediately called for an ambulance.  We always take Ian to the hospital in an ambulance when he is sick because we have learned that even if everything is under control when we leave, that can change.  Usually I tell them he is fine, we are getting packed up and we just need a safe ride.  This was a little different, it actually felt like an emergency.  I grabbed our emergency bag and we left.

Long story short, Ian had Pnemonia and was septic and his left lung had collapsed.  He spent 5 days medically paralyzed and sedated.  It took him another 5 days to recover.  Yesterday (Friday) after 10 days in the ICU, he was finally discharged.  Owen had been sick about a week prior, so most likely Ian caught a virus that he just wasn’t strong enough to fight off.  We had had such a good long 9 months that I this was a wake up call for us.  Maybe it was our warning going into cold and flu season to be extra careful.

The good news out of this admission – Ian is off Oxygen.  He has been on O2 for most of his life.  Sometimes we are able to turn it off, but we have not kept him off for a full 24 hours since he was probably 2 months old.  Thursday when we were weaning it down, we got to the point of turning it off.  I fully thought we’d be turning it back on later in the day.  But we didn’t.  We’re not sure if the steroids that he was on for the pneumonia or not, but we decided to start him on an inhaled steroid.  He’s also not been desatting (dropping his 02 levels) at all when he cries.  This is new for him and a little inconvienient in a way, b/c since he can’t make noise, the alarm has always let us know when he is upset.  This kid may actually learn to cry for a little bit!!  I’m also feeling pretty encouraged that this might be his ticket to getting off his vent.  Usually when we take him off the vent, we have to supplement with Oxygen.  Today, Ian was off his vent for an hour and a half with no O2!  The only reason I put him back on was that he was just sick and I didn’t want to push him too much.

Last but not least, I want to let everyone know that we are hosting a blood drive in honor of Ian’s 2nd birthday.  Yep – Ian will be 2 next month!!!

The blood drive is on October 24th at Oakmont Presbyterian Church from 9 – 2.  Ian has used so much donor blood over the last 2 years.  He used 2 units during this admission alone.  There are so many people out there who benefit from blood donors.  People often need blood transfusions with surgery.  Cancer patients use blood products.  And kids like Ian need blood products when they get sick.  If you are eligible to donate, please consider joining us on the 24th.  This is also the day of the Oakmont Halloween parade.  So with any luck – Owen and Ian may show up in their costumes!!!

Ian has now been at home for over 5 months straight!  I know some people follow the blog for updates on how Ian is doing, so I apologize for the lack of updates, but there really hasn’t been much to say – except that we are busy playing and having fun as a family.  We are fully enjoying the spring weather – maybe even too much as it seems to bother Ian a little bit if he is outside too much.  So – we’ve just had to start paying attention and using our outside time wisely.

As many of you have seen Ian has become quite the little star.  UofM – C.S Mott Children’s Hospital, the hospital where Ian had his airway splint surgery, did a press release last month because the doctors who developed the splint were published in a medical journal/magazine.  We knew there was going to be a press release because UofM contacted us for updated pictures and some comments, but we really did not expect the extent of the coverage.  The day of the press release we received phone calls from just about every local news station and the two Pittsburgh Newspapers.  Then, the articles started getting re-run just about everywhere.  It was really exciting.  I will say, I have/had no interest in being on the news.  Especially this version of me that is up about 40lbs from my normal chunky self (no worries, I forgive myself – and I’m working on it).  But – there are two very important reasons that we agreed to do the stories which are very tied to each other.

1 – While the airway malacia (floppiness) that Ian has is very rare, there are other kids out there that have it and are struggling to find an answer.  We felt hopeless.  The solutions that we were presented with weren’t great and Ian had already come so far – we didn’t want to give up on him or put him in a situation that could cause him more problems in the future.  It was scary and really difficult to see Ian struggle everyday to breathe.  I am in some facebook groups where I see other parents struggling with the same issue.  The problem is, because this condition is rare, and it is even more rare for it to be so severe, there are very few doctors that have seen these very severe cases, and even less who have seen kids actually get better.  There is very little money invested in a solution, because quite frankly, there is very little money to be made with finding a solution.  We felt hopeless.  Until I happened to see an article about a little boy who was saved with a 3D printed airway splint.  Thank God for hospital boredom and my addiction to my phone.  Garrett’s story saved Ian.  And Kaiba’s story saved Garrett.  So – we will talk to anyone who calls and wants to tell Ian’s story.  Because if it saves one child it will be worth it.

2 – A pair of doctors (and the team they were working with) decided to invest their time and research dollars into a solution that saved 3 kids and could help SO many more.  They need to be able to do a clinical trail to help more kids.  When we were presented with this solution it was a very difficult decision for us to take Ian to UofM.  Our doctors were cautious because there is no data to back up an experimental procedures.  These are doctors that we trust who were split on whether we should try it or not.  The reason – there were only two previous cases.  Not only would a clinical trial help other kids like Ian, it would open the doors to other uses for similar devices and research.  Media attention will help get the funding needed for a trial.  So – we will talk to anyone who wants to hear Ian’s story.

Ian is probably the happiest kid ever.  I can’t even begin to express how well he is doing developmentally.  He still has big hurdles to overcome with feeding and gaining strength to stand and eventually learn to walk.  But there is no part of me that doesn’t believe that he will do it all.

As always – thanks for all of your love and support.

And – as a reminder – if you are interested in walking with us in the Pittsburgh Congenital Heart Walk – please join us!  And it would be great if you could register ASAP so that I can include you in our count for team t-shirts.  The walk is on Sunday, June 28th at North Park at 10AM.  It is a Sunday.

http://events.congenitalheartwalk.org/site/TR/Walk/General?team_id=3565&pg=team&fr_id=1110
And – as always – some pictures:

I don’t really know where to start, so I will start with what I only realized the week that it happened.  Ian spent his first holiday at home since Christmas Day 2013 when he was just six weeks old.  We spent Easter Sunday together – in our own house.  Our two boys dyed eggs together, got their baskets together, and found eggs together.  We ate as a family outside the walls of a hospital.  Actually – we ate outside – since it was a beautiful day.  AND Ian sat unassisted with his brother and their baskets.  He had done it for a few minutes on the Friday before Easter, but on Easter Sunday he decided he could really do it and he showed his stuff pretty much all day.

Sitting was a six month goal for us with PT/OT.

We have been playing, going outside, sitting, practicing standing for strength, weaning meds, weaning o2 and always smiling.  Ian’s only issue right now is reflux.  He has at least one good spit up a day and lots of gagging.  We just switched his reflux meds and he seems better, but not great.  The crazy part – he throws up and then he gets right back to business – playing.

We have great nurses so Justin and I are able to work – life is good!

Our plans for this summer are to wean the vent a little bit more, wean oxygen and enjoy our boys.

Last but not least – we will be doing the Congenital Heart Walk on June 28th and we would love a huge team again.  This year we will be a bit more organized now that we know the lay of the land.  We will have team t-shirts, so if you plan to walk, join our team so I have a count.  And if you can’t walk, consider donating.  Ian would not be where he is today without wonderful doctors and RESEARCH.  Money for research comes from awareness.  It is unbelievable to me how many people are affected by Congenital Heart Defects and Diseases.

Congenital Heart Walk – Ian’s Infantry Team Page

It’s real.  After all that we’ve been through, sometimes I feel like I need to pinch myself.  Ian has been home for two months now.  I know that at any point something could pop up and ruin our happy streak, but I just keep trying to shove that back where it belongs.

Ian’s Breathing:

Ian had a wean to his vent several weeks back and he handled it beautifully.  He is doing better than ever with his breathing.  His Pulmonologist plans to do one more wean to his vent in May and then just let him grow on his settings.  He said when he’s ready to come off the vent, he’ll wean really quickly.  I have learned that I have to practice patience here.  When I see Ian doing well – I want him to soar.  But he needs time to be successful.

Ian’s Development:

We have been going strong with Physical Therepy and Occupational Therepy for several weeks, and it is crazy to see the progress.  Ian is just a hair away from sitting on his own.  He can for a few seconds, but he’s not stable yet. He got a stander (on loan for now) and he tolerated it really well.  This will help him build strength in his legs.  Justin calls it the torture device because it does look a little crazy, but once he’s strapped in he’s happy to play if you keep him occupied.  This will be good for him because he really WANTS to move.  He can kind of roll and skwirm his way around, but he gets frustrated.  If you put him on his feet he tries really hard to go – he knows what to do – he’s just not strong enough. Lastly, he’s been doing really well reaching for, picking up and holding his toys.  And – he’s bringing them to his mouth.  This is a huge milestone and will get him closer to eating by mouth. (He is 100% formula fed right now through his Gtube)

Ian’s Upcoming Week:

This week we have Ian’s first outpatient cardiology appointment since discharge and a head CT scan.  Ian’s heart has been pretty stable, so I am just hoping and praying that nothing has changed.  We love Ian’s cardiologist, so it will be really good to see her and show her how well he is doing.  The CT scan makes me a little more nervous.  Ian’s head has been growing faster than the rest of his body.  He has a dandy walker cyst on his brain, which can cause hydrcephalus (fluid on the brain).  I try to just completely ignore this to be honest.  We have had so many doctors tell us its just a wait and see game with the cyst.  It can cause coordination issues from unnoticable to not being able to walk.  Somehow I can’t believe his will cause him not to walk, because he just seems so motivated.  But the hydrocephalus is scary to me.  So – if you pray, please send one up for us that his brain is just growing normally now that he’s able to be happy and interact.

Congenital Heart Walk:

I signed up and created a team!  For some reason I am unable to log in though!  We would love for everyone to join us again for the walk.  Last year we had a huge team.  Justin and I were really shocked and thrilled with how many people came out.  And we were in the top 5 teams for raising the most money.  We promise to be more organized this year!  Register or Donate to the Ian’s Infantry Congenital Heart Walk Team

7 weeks since Ian was discharged back in January…and going strong.

We have had two very quick admissions in these 7 weeks.  One of them was just last weekend.  On Saturday Ian was miserable.  He slept great Saturday night and then Sunday was having a really hard time, so we decided to take him in.  He got some IV fluids, a whole bunch of cultures and IV antibiotics and by Monday he was back to himself.  All of his cultures came back negetive, we stopped antibiotics and decided to hang out for 24 hours and make sure Ian was okay.  As usual this winter, the hospital was jammed packed, so to make room for some sicker kids, they moved us to the CICU.  What a treat!!  Everyone was so excited to see how Ian is doing.  We have made new friends in the PICU, but the CICU was our home for many many months, and the people there are like family.  They were so genuinely happy to see Ian thriving.  And – I know they have had some really sick kids, so I hope we were able to remind them that some of these really sick kids do get better!

We went home on Tuesday and Ian has been as good as ever.

So – we are plugging along.  Ian has occupational therepy once a week and Physical therepy twice a week.  We are working on getting him stronger.  He has spent alot of time laying in a bed, and now he gets to focus on all of the things he has missed.  His big brother can’t get enough of him, and vice versa.  Owen does a great job helping and pushing Ian.  He steals his toys, makes him forts, draws him pictures… yesterday he pinched him and made him cry.  Ahhh….

While we were in the hospital, the social worker stopped by, just to say hi and see if we needed anything.  Then she told me she had just given one of our blanket/pillow packets to a mom.  The mom was floored that someone would do something so nice for someone else.  It made me so happy!  I just wanted to share with everyone who helped.

As always, here are some pictures.

We made it to our 1 month post hospitalization clinic day!!!  In the past we have always been readmitted and have had to cancel our appointments.  We saw 3 specialties on Friday.  It was a really long day for Ian.  He was super cranky in the beginning, but by the time we were walking to the car, he was happy as can be.  I think Justin and I did pretty well managing too!  It is ALOT of work to have a trach/vent, Gtube fed baby out all day.

We saw Nephrology (Kidney Doctors), Diagnostic Refferral Group (Specialty Pediatricians) and Pulmonology (Lung Doctors).  Everyone was super wonderful and made things much easier on us than they probably had to.

Some work we have to do:

– Ian needs a CT scan b/c his head is growing at a faster pace than the rest of his body and he has a dandy walker cyst.  Dandy walker cysts can cause hydrocephalus (fluid on the brain).  So – we have to check to make sure that his rapid head growth is not related to the cyst.

– We are increasing Ians feeds just a little bit b/c his length is not growing as fast as his weight and head.  This can be caused by MANY things and if you look at his curve, his length has actually significantly increased over the past few months. Growth for Ian though is always good, b/c if he can grow, his lungs will be better.

The good stuff –

– We weaned Ian’s vent by just a little bit, and so far he’s doing great with it!! His pulmonologist was very optimistic, but cautious which is the best way to manage Ian!

So – Happy Valentines Day everyone!  And I want to wish the very Happiest Birthday to my awesome nephew Jack.  I haven’t spent near enough time with him this year, but I am hoping year two brings many more visits and snuggles with my neice and nephew.  We miss them!

We had a great Valentines day at home as a family AND we have a great nurse tomorrow night that is coming early.  Justin’s mom is coming to put Owen to bed, so we are planning to go out like normal people do.  Just a few blocks away, but just the two of us, while our boys are safe at home.

So – I haven’t updated in quite a while, because there has been pretty much nothing to update.  As of tomorrow morning, Ian has been at home for 3 solid weeks! 4 weeks in total if we include the first week, but Ian was admitted for a quick 3 days during that first week.

So – being home for a month means that we will have clinic appointments next week 😮  We’ll see Nephrology, Pulmonology and Diagnostic Referral Group (DRG) on Friday.

Ian also has his Early Intervention evaluation this week so that we can start PT/OT very soon.  It will be nice to have some direction on what we can do with him to start to get him working on progressing physically.

Last but not least – this week is CHD Awareness week.  Lots of people complain that CHD doesn’t get the recognition that other causes get.  And that is true. I have a pretty strong belief that it is up to us – as people whose lives have been affected by it, to do something to make that change.

Before Ian, I had heard of heart defects in babies. But, the two stories I knew were distant enough from my own life that I ignorantly lived thinking – I know kids that have that, and they are doing great.  Which is true.  But what they had to go through to get there was terrifying.  And, although they are doing great, its not over for them or over for their parents.

The truth is, there are SO many kids who are doing great.  Really great.  Adults that are doing great.  Interestingly, someone I work with randomly mentioined that he has a CHD and had open heart surgery as a baby.  We have come a long way since babies with HLHS had no chance.

But – there are still kids like Ian – whose diagnosis’ are so rare that not many doctors have seen more than a few in their career.  There are still pregnant mothers who have ultrasounds (sometimes multiple and at big hospitals) and their babies are not diagnosed.  There are still babies, kids, and adults dying WAY too young.  We need WAY more research, WAY more awareness.

Ian has Tetrology of Fallot, Absent Pulmonary Valve.  His missing pulmonary valve caused his pulmonary arteries to get huge. His huge pulmonary ateries compessed his airways in utero and restricted lung and airway development.  Many kids with Ian’s diagnosis die without ever even having surgery because their lungs are the problem, and doctors really just don’t do lung transplants on tiny infants.     We are so blessed that Ian’s cardiac surgeon (Dr. Morrell) was able to see enough lung tissue that he thought he could give Ian a chance.  We are greatful that we live in a city with a great children’s hospital with amazing staff who saved Ian’s life. We are grateful for all of the research done at c.s. Mott for kids with severe tracheobroncial malacia and for doctors who didn’t give up on our son.

Coming soon I’ll be setting up our team for the Congenital Heart Walk. We would love for you to join us to raise awareness and funds for CHD.

Okay – Back to our amazing boy:

Today – Owen and I and two of Justin’s coworkers/friends (Lisa and Sharon) delivered over 50 sets of a pillow, blanket, pillowcase and Tide to parents sleeping in the ICUs at Children’s Hospital of Pittsburgh!

I can’t tell you how many people I have seen sleeping in the waiting rooms or bedside with the plastic covered pillow and the hospital issued white blanket that has been bleached 100 times.  Now those people are sleeping on a nice comfy pillow with warm soft blanket.

Thank you so much to everyone who helped us!

We filled 4 of the carts shown above!!!

Ian is doing great! We are loving having him at home!  Tonight he got a bath in his ducky tub and he actually spashed around and enjoyed it!!

I have to apologize to those of you that follow us through the blog only.  For some reason I got locked out for the last two weeks and couldn’t do any updates.

SO – IAN IS HOME

Ian was realeased from CHP 2 weeks ago tomorrow.  Last weekend we did have a brief readmission for fluid.  He is doing SO great.  He is happy, smiling and playing.  Its super busy having him home again.  He is on a TON of meds and gets breathing treatments at least 4 times a day.  It’s like we have a little mini ICU right in our house.  But it is worth every single second!!  Our home nurses have been great.  We mostly have the same people as when we were home before, which is really nice because we know them and they know Ian.  And Ian is MUCH easier, and more fun than he was the last time he was home.  People ask all the time what kind of help we get at home.  We get 10 hours of nursing during the day so that Justin and I can work.  Right now one of us always works from home so that we are here in case they have any questions.  We also get 8 hours at night so that we can sleep.  All kids who have trachs get night nursing b/c they need someone to be watching at all times to make sure they are okay.  Ian can’t cry over his trach yet, so we would never hear him if he was in distress.

So – now we start living our new normal (hopfully).  Last December when I was talking to one of my managers, I was telling him that after Ian’s cath, things should get more normal again.  I couldn’t have been more wrong by the way…  He has a son who has had some pretty serious health problems.  He said – there will be a new normal.  I honestly just thought – oh yeah  things will be different.  NOW I know what he meant.  We will never look at life the same.  Everything is completely different.

Please continue to keep Ian and our family in your prayers.  The longer he can stay home and healthy, the better off he will be.  Getting sick is a HUGE deal for Ian.  So if we can delay that even months, he will be SO much stronger.

First – Ian is doing great!  His electrolytes are continuing to get just a little bit better every day.  He is happy as can be and we just want him HOME.  But – for some reason we are being tested.  Monday we were told that we may not have nursing until NEXT Wednesday.  A full week from our highly anticipate d discharge goal date.  Argh – so we sit and wait because we can’t do it on our own for that long.  Ian needs someone to be awake with him 24/7 because of the trach.  At some point we may get more comfortable just having someone sleep next to him, but for now, someone needs to be awake with him, and Justin and I can’t do that on our own for 7+ days.  Argh!

Then – yesterday, Justin was awakened from a crappy night’s sleep at the hospital (for some reason Ian didn’t sleep well) to be told we were being moved to the NICU.  Annoying, but whatever.  Until he gets there. To a shared room.  One of 3 ICU rooms meant for twins.  3 out of approximately 75 ICU rooms are set up for twins and this is the only ICU room available.  Whaaahhhhh!!!  The couch for a parent to sleep on is on the side that the other child is on.  A child who can cry.  The nurses in the NICU are used to tiny babies, not a 13 month old.  They have been super nice, but they don’t know Ian, and he doesn’t know them.  So its not really realistic for us to just sleep at home.

This MUST be the final test right!?  I am wondering if someone is just seeing if they can get us to crack…. 13 months – almost all spent in the hospital – almost all of it in an ICU.  Will we finally crack and lose our minds.

Okay – to end on the positives:

– Ian was moved out of the PICU because he was their most stable patient and the safest to move

– The germs in the NICU are WAY less than the PICU so it’s much less likely that he will pick something up

– The parents of the kid next to us don’t sleep here, so we can have the couch

– As I mentioned, the nurses have been VERY nice.

– Ian is doing great!!

And – some pictures

Oh Ian…..

On Tuesday morning Justin and I were walking from the Ronald McDonald House and I said to him that I felt like there must be a reason that our transport home did not work out for the holidays.  Well…. There was.  Ian started to get feisty on Tuesday afternoon and by Christmas day he was back on the hospital ventilator and on IV sedation drips.  Justin felt really defeated.  I felt helpless.  Why, why, why does everything have to be so hard on him.  That was my pity party 😉

It turns out Ians electrolytes got out of wack which spiraled into im getting fluid overloaded, which spiraled into him not being able to breath which is a vicious cycle.

Owen and I had a VERY nice Christmas eve and Christmas morning at home because that is what Owen wanted – to open his presents at his own house.  Then we headed to Michigan to bring Ian his presents.  Both got more than any kid should ever get, but they both deserved it!  By the time Owen and I got to the hospital Thursday night it seemed like Ian was doing a little better.  Yesterday he seemed to have turned a corner.  And today he was pretty much back to himself.

We had a great day today.  Owen and Ian played together on the floor and had so much fun that Ian was laughing.  It made Owen so so happy.  Owen got a disco ball for christmas and had to bring it for a dance party with Ian.  Ian loved the lights.  I am sure everyone thinks we are nuts having a disco ball in an ICU room, and heck, maybe this year has made us a little nuts, but noone kicked us out.

So – now we are back to steps to get home.  We have to wean Ian from the IV sedation.  Hopefully it will just take a few days.  Then he has to go back on his trilogy for a few days.  Best case would be a week.  Judging from today I would say its doable.  Judging from Ian’s whole life I would say we’ll see.  Plans are just plans.

Someone told me today she wishes she could spank him. There is a respiratory therepist in Pittsburgh who calls him a stink pot. A Fellow who refers to him as a sensitive soul (who she does not trust). Many doctors call him tough. He frustrates me to no end, but when I see him smile or laugh my heart is SO full.  He is so easy to love.  All of those mentioned above love him and want to see him go home and stay there.  We are so so close….

A funny from my week with Owen:

Owen woke up on Wednesday with what we refer to as #3 in our household.  Others refer to it as diahrea.  He promptly informed me that he had #3.  “Not #4 – That’s the spicy kind that you get from eating spicy vegetables. Just regular diarhea.”  He also randomly had a rash so we were off to the pediatrician to check it out (it all ended up being fine).  On the way there he told me “mom, I am not going to eat my boogers anymore. I don’t like having diarhea”  Hopefully the boogers don’t end up on the wall….

And sound asleep after a day full of fun!!

PS – If anyone has new blankets, pillows and pillowcases, I can still take them.  Justin would kill me for saying it, because we are already overflowing.  Everyone has been so so generous.

Ian has been through his ups and downs over the past two weeks.  We finally got through and are done with his withdrawl issues.  He still has some drug weaning to do, but it all goes in his Gtube now, so we can just go REALLY slow with that, and honestly just stop weaning if he doesn’t like it.

Now our feat is getting him comfortable on a ventilator that he can go home on.  He did great on his trilogy on Thanksgiving.  Then that night, unrelated, he got a huge fever, and was acting septic.  Everyone was suspecting a line infection, but thankfully his line came back clean.  He likely had an inflamatory response to his Flu vaccine like he has for many of his other vaccines.  It’s tough because he needs the vaccines.  If he actually got the flu it could be fatal.  So – from here on out we will pick his vaccines based on what he is most at risk for and hold the others for a few months until he is stronger.  One of those will be Tdap since the vaccine often fails as we get older and adults can get pertussis (whooping cough) and pass it on to kids.  If you might be near Ian or us anytime soon, please make sure your vaccines, including Tdap and Flu are current.

After the fever, etc went away, Ian’s fluids were a mess, so we have spent a few days figuring that out.  The last 3 days he has been really good.  Of course now his Psuedomonas is creeping up on him.  This is bacteria that he has always had in his trachea, but it really only causes a problem sometimes.  We started antibiotics yesterday so hopefully we caught it in time not to cause any major setbacks.  He’s had his moments, but he has been mostly happy and playful.

So – onto that… We have gotten him on the floor to play.  OT played with him in pudding – which he loved.  And yesterday I put him in a high chair for the first time.  He really loves it all.  When he is doing normal baby things, he is so happy!!  We are doing home vent trials in between the playing and he is holding his own.  He still really likes the hospital vent best.

Also – We got Ian’s infantry shirts made for the hospital staff and they are wearing them like crazy – It brings a smile to my face everytime I see one.  Today I was on the phone in the lobby and one of the respiratory therepists from our last admission walked by in one – so so nice.  I see atleast one everyday and usually more than one.   Don’t worry CHP Hospital family – yours are in Pittsburgh 🙂

To all of those who have prayed for us and helped us over the past year ….  Thank You!!

Please take a few minutes to look at a compilation of pictures of Ian’s journey to his First Birthday!!

So – we spent Ian’s first Birthday in the PICU in Michigan.  Weeks ago when I knew we would likely spend his birthday in the hospital I was a little bummed, but in the end it was completely fitting for Ian’s first year, and we really had a super nice day. 

Ian had a tough weekend with Justin, battling the worst withdrawls he has ever been through.  By Monday though the team had figured out a wean that would work for him and he was back to his happy smiling self.  Owen and I drove to Ann Arbor on Wednesday and I was greeted with a huge smile and belly laughs.  With everything Ian has been through this year, he has had periods of weeks without cracking a smile and has had some very good weeks with huge smiles and giggles.  But never laughing.  At first I thought he was choaking because his face got very red, and with his trach, he still doesn’t make any noise, but he was definately laughing.  It was the absolute best feeling…

As he weans off the most recent sedation regiman that he was on from the rhino virus, he is really starting to gain back some of his lost talents.  He is starting to suck on his pacifier again, and grab for toys.  He really likes playing on his belly (for a little bit) and pushing buttons so things light up and make sound.  His absolute favorite though is trying to imitate us talking.  Kids with trachs have a really hard time making noise since the trach is below their voice box/vocal chords, so it blocks the air from getting up there to make noise.  But as they get bigger and stronger, many do learn to get air past the trach.  I can’t wait for the day that Ian figures out how to make noise. 

Ian started his Birthday a little bit fussy in the morning, but then he took a long nap.  During his nap Owen decorated his whole room with all of the decorations that he had picked out when we went shopping at home.  He was very particular with where things needed to go, and him doing the work.  By the time Ian woke up, he was back to his happy self.  We had Pizza, Cake and Owen opened Ian’s presents.  My boys are so spoiled with clothes and toys.  Ian now has every light up, button pushing, musical toy he could ever want, so he is all set to start working on his playing skills.  Some of his nurses from the PCTU (Cardiac Unit) stopped by, and lots of PICU nurses poked in to see his room and share in his day.  We got so many texts videos and messages, I haven’t had a chance to respond to thank everyone.  

I really wish I could personally thank each and every person who has helped us this year.  People ask all the time how we do it.  Honestly, with help – lots of help.  We get prayers, kind words, food, cards, family who sits with Ian and help withs housework, babysitting, dog sitting.  And I can’t even quantify the help from doctors, nurses, respiratory therepists, child life specialists, and social work who truely care about Ian and us.  Complete strangers have sent us cards with money.  Charity groups at the hospital and Ronald McDonald house donate so much time, money and little items that just make things easier.  I can’t even begin to imagine how hard this would all be without support and help.  The saying “it takes a villiage” is our life now.  And we are so, so greatful.

We have so many people who ask what they can do for us or where they could donate money in Ian’s name.  When you go through something like this and you have so many people giving to you, you constantly ask yourself – what could I do to give back.  So many organizations have so much covered, that its hard to think of something that isn’t already being done.  When we were transported to Michigan the first time, I was only able to bring one bag becuase of the size of the plane, and I know that some people who come on helicopters can’t bring anything.  Our transport was planned, so Justin was enroute a few days later with my “stuff”, but many times kids end up in the hospital unexpectedly and parents are at their bedside with nothing but what they were wearing when whatever disaster struck.  Thankfully there are tons of organizatoions that provide little care kits with a toothbrush, soap, and a few snacks and necessities.  When I arrived in Michigan the first time, the one thing I was missing was my blanket and pillow from home.  Whether you sleep bedside, or you have accomodations and a Ronald McDonald house, hospital grade pillows and blankets really aren’t the best.  Having your own normal threadcount pillowcase on a pillow that isn’t covered in cleanable plastic or a blanket that isn’t hard and crispy from being washed in bleach and no fabric softner, makes a HUGE difference.   

This year for Christmas, instead of buying our kids clothes and toys, because they really have too much of that stuff already, we would really love if you would consider donating an adult size blanket, a pillowcase or a pillow.  They don’t have to be expensive – just someting that looks comfy, so that we can donate them to the hospital and Ronald McDonald House.  So – whether somone’s child is sick unexpectedly, they have to be transported, or they just didn’t take a second to think of what they need when their child is ill, they will have something comfortable to help them get even a little bit of sleep.  I will divide whatever we collect between RMH in Ann Arbor and CHP social work.  If you don’t have time or energy during the holidays, I could also use giftcards to target or walmart (because they are close to home and easy to get to) where I can purchase travel size packs of laundry detergent and  anything we don’t collect to put little kits together.  Any donated items can be dropped off on our front porch or mailed (515 9th Street Oakmont PA 15139) 

 Birthday Pictures are in this gallery:

 http://www.iansinfantry.com/?p=763

And a few more of him playing yesterday…

Ian is making progress over the past few days.  He is down to a peep of 8!  This is a huge deal!  It is less than half of what he was on when he got to UofM.  This is also the peep that he went home on in July.  The plan is to continue to wean by 1 everyday until Ian says stop.  Then we will work on some of the other settings.  The best part is, he has contnued to maintain or progress while withdrawing pretty badly.  Yesterday was a very bad withdrawl day – probably the worst I have ever seen.  Unfortunately Ian has been on alot of sedation meds for various reasons over the past few months, and coming off them is not going to be easy.  The good news is, he held his own without having to increase his vent settings.  Today he seemed much much better.

I came home today to spend some time with Owen.  Justin is in Michigan with Ian.  Here’s hoping Ian continues to progress.  If he keeps it up at this rate he could be home very soon.

Ian went for a bronch today.  I have to be honest, I was hoping Dr Green would see that there was something wrong with the splint that he could fix.  When he walked in and said “Good News.”  I quickly ran through the possibilities for good news in my head.  I can’t imagine him saying “Good News” to mny hoped for issue with the splint.  Instead he said that there is nothing compressing or obstructing Ian’s airway.  He said when he took ALL of Ian’s peep away, and let him breathe on a vent setting that was spontaneous, his airway was OPEN – with NO peep!  In the ventilation mode that he was in his airway was completely collapsed.  They think he was fighting the vent and collapsing his own airways.

This news is the absolute best that we could have hoped for!  We are working now on weaning the vent somewhat aggressively and weaning sedation.  They immediately switched his ventilator mode and put him on a peep of 10 so that he can breathe spontaneously.  He is looking good so far.  And he is SO SO happy.  I haven’t seen him this happy in MONTHS.

We had some very big changes today, so tomorrow we will re-evaluate.

Keep the prayers coming!  Ian doesn’t do anything without setbacks, so we will have to be patient.

We made it!!  Ian started doing trials on the travel vent last weekend to make sure that he was safe for transport.  He did great, so the hospital went ahead and scheduled our trasfer for Thursday.  Since the last two transfers didn’t happen last minute, I wasn’t going to believe it until we were in the air.  I am so happy and greatful to say that the transfer went well!  Our Pittsburgh team made sure that Ian was safe before we left.  The transport team was awesome!  And we arrived safe and sound at C.S. Mott around 12 pm.

As soon as we were in the abulance in Michigan, Ian started flashing that beautiful smile that he has.  It was nuts.  I am not going to lie, he was well sedated for the trip, so he may have just been loopy, but it was so great to see.  When we arrived we were greated by a nurse, NP and RT that we know from our last visit and the room is just caddy corner from our last stay.  So – what could have been overwhelming and scary, was not at all.

Once Ian was settled in, he was happy as a clam.  Happier than I have seen him in a while,  He was actually laughing at me!  It was great!  Since then he has been fussy at times, but overall he has done really well!

Friday Ian had a CT scan and Monday he will have a bronch.  Both of these tests are repeats of tests that were done in Pittsburgh but with a fresh set of eyes and opinions, with several benefits… These doctors have seen kids like Ian do well, these doctors saw Ian do VERY well once before.  And, they believe that even if he has to stay on the peep that he is on, he can get better (Peep keeps his airway open).  Our docs in Pittsburgh are amazing, and Ian wouldn’t be here without each one that has taken care of him, but we need answers about the splint, and this is where we will get them, so I am so thankful that we decided to bring him back here, even if we can’t come up with any different solutions.

Justin and Owen went to his cousin Brenna’s wedding today.  Owen was the ring bearer and he did an amazing job.  I’msad to have missed it.  Congrats Brenna and Bryan!

Attached are some pictures from the last few days….

So – Ian has spent the last 7 days on an oscillator.  This is a special kind of ventilator which is often thought of as a last resort.  For Ian, the doctor this week thought it would be a good proactive approach to fighting off the rhino without waiting until we were in trouble.  She was right.  She also happens to be one of our favorite attendings because she is a good refreshing combination of bluntly honest, compasionate and very respectful of Justin and I as parents. (Thank You Dr Felmet).  This was the last week of 4 in a row with our new favorite Fellow too.  One who we butted (is that a word) heads with in the beginning has really become one of the doctors that we trust the most in his advice and the care that he takes with Ian.  He has such a great team of doctors, nurses and respiratory therepists that care so much for him.  Ian did great on the oscilator. It was a tough week. He was paralyzed and sedated and had his moments that were scarey, but most of the time was spent sitting and waiting riding out the virus.

Today, we switched Ian over to the regular hospital ventilator.  And – so far so good.  His blood gases have been amazing.  So amazing that I really think they should be weaning the vent – mostly because I fret so much about the damage that it is doing to his lungs.  But – we are taking it VERY VERY slow.  He is still sedated becuase we are taking this one tiny baby step at a time.  Hopefully tomorrow he’ll be off the paralytic and I will see his sweet big eyes and smile again.

Once he’s stable – we’ll be back to plan Michigan.  And the home again – as a family!

Over the weekend Owen and I went to the zoo – accidentally on the same day as Zoo Boo.  Luckily Owen wasn’t upset that he didn’t have his costume and we lucked out that there wasn’t too much of a crowd because the weather was a little rainy.

While Ian was resting, his normal crew continued to come and sit with him during the time that Justin and I spent time at home.  They are relentless with the care that they show to him in making sure he doesn’t spend too much time alone.

Here is Ian and Aunt Leigh…

Today we got the very special suprise of watching Batman clean the windows…. I’ve seen picture, but this was so very cool to see in person.  These superheros are super cool…

We now have an answer to why Ian had such a bad night on sunday and why he did so bad on his home vent when he had done so well the week before.  He has rhinovirus – aka the common cold.  After a pretty good day yesterday, he woke up pretty miserable today.  About half way through the day, the viral panel results came back positive for the first time ever.  So – our trip is on hold.  A cold for you or me is uncomfortable.  For Ian, it is on a whole different level.  Right now he is sedated so that the ventilator can do its work and he can heal.

Post from October 5th:

Ian has been doing okay for the past week.  Probably about two weeks agot Justin and I started talkng about the possibility of taking Ian back to Michigan.  Last Thursday, Ian’s transport was approved by insurance without a question.  We feel like it has to be a (another) sign that it was so easy to get insurance approval.  Pittsburgh was ready to transport Thursday or Friday, but it turns out there are no beds in the PICU at Mott. So we are standing by.  We are really hopeful that Dr Green and the ICU doctors at Mott will come up with something to help Ian get back to where we were when we left them 5  months ago.

So – for now – we are making small sedation and vent weans and we are waiting for the word on transport.

Some reflections:

As I sit in my house tonight I feel grateful.  I feel so so grateful that Justin and I have built such a nice family together.  Owen is asleep upstairs, comfortably resting in his room.  Justin is at the hospital with Ian.  How did I score this husband? I look arounds my house at all of the things we are able to give to our children.  I am proud of what we have been able to provide for both of our boys.  I am most proud of the stability.

I feel like we have hit the jackpot with employers that understand our current position.  We have both been given so much flexibility.

We are so so lucky to have family that goes to the hospital to spend time with Ian, so that we can have  some family time at home and atleast attempt to give Owen some “normalcy”.

October 13th:

Overall Ian has been doing really well.  Several weeks ago we made a big vent change and he is doing great with it.  These new vent settings are very high, so hard on his lungs.  This is why we have decided to take Ian to Michigan for a second opinion.  There is a good chance that these vent settings could destroy his lungs.  Ian’s survival and longterm health hinges on him being able to grow healthly lung tissue, bigger airways and bigger vessels to carry blood to his lungs.  So we have to protect those lungs if we can.  We had a false start on Monday.  We had everything set to leave and there was an open bed.  But Ian didn’t like the switch over to his home ventilator and he needs to be on some type of portable ventilator to travel.  We are going to try again today and with any luck we’ll be in Michigan tomorrow.

Thanks for all of the well wishes and prayers. 

This was a crazy week for us.

Starting with Ian:

He had a rough one.  He was having trouble early in the week.  With what, I actually don’t know.  He was super irritable.  It didn’t seem to be respiratory, but of course after a while he would get himself into a fit where he’d have trouble breathing.  On Tuesday he had a ton of sedation for the irritability and at some point during the day it was decided by the ICU an Pulmonology that they would like to paralyse and sedate him and see how he would do on really high peep (peep is constant pressure to keep the airways open) in an attempt to empty his left lung.  So that was the plan – with xrays every 6 hours to see if his lung was getting better and to make sure he did not develop a pnuemothorax (an air pocket – this would be bad). sedated xhim and turned his peep up to 15.  Immediately you could hear equal breath sounds on both the left and right.  Over three days he was titrated up to a peep of 18 slowly.  Unfortunately there was really no change to the size of his left lung.  The good news though – his right lung looked better.  On Thursday, Pulmonology was FINALLY engaged to do a bronch.  This is something we have been waiting for for atleast 3 weeks.  The bronch showed his distal airway open about 50% of the time at a peep of 15.  At a peep of 18 it was open almost the whole time.  So – right now Ian is on a peep of 16 – which is VERY high.

Yesterday – the paralytic was lifted and Ian WOKE UP for the first time in 3 days.  It was so nice to see his eyes again.  This morning I snuggled with him for a while – such a wonderful thing.

Good Stuff:

As of Friday – our Townhouse is SOLD.  No more rental property taking up our precious time.  Our realtor was so over the top helpful. Susie – If you follow along – THANK YOU!!!  One less thing on our plate.

Apples and Michigan:

Who said Michigan was famous for Cherries?

Owen and I (and his Nana and Poppie), went to a farm to pick apples.  After lunch we went to the corn box.  What is that?!  A (sand) box full of dried corn.  As Owen and I sat and played, there was another mom and a little girl sitting next to us.  We start talking about nothing really – picking apples, the corn, the petting zoo.  The mom asked about Ian’s Infantry b/c Owen had his Tshirt on and I of course had my bracelet.  I gave her the short explanation an she told us she would pray for Ian too.  Then we went on to other things.  Turns out they are from Michigan.  They lived in Ann Arbor.  Interestingly, Justin and I have been talking about taking Ian back to UofM.  So – this was a weird coincedence.

Ian is doing pretty good right now.  We’re not sure what next steps are but there are many.  At a minimum, he has a BUNCH of sedation to wean from.

So – I will start with the good first.  Justin stayed with Ian all day Saturday so that Owen and I could have a “special day” and we did.  We went to the point and we had a blast.  We packed up sandwhiches and Daphne and drove downtown.  Then, we sat and ate lunch, ran around the fountain, splashed each other and just really had a good time.  We both needed it.

The Bad – Ian has another line infection.  His 3rd this admission.  The line infections are really frustrating because overall, they are preventable.  His lines have been in some bad spots because his access is limited, so it’s tough, but to be on the third is just like a bad nightmare.  Just when he starts to feel better, he gets sick again and sure enough we notice something off with the line, culture it, wait a few days, start antibiotics, and repeat.

The Ugly – He isn’t really getting better but its hard to tell if its because he hasn’t had the opportunity to get better or if he is just becoming worse overall.   We don’t have a clear picture of why he is having the symptoms that he’s having this admission and if those symptoms are causing his respitory distress or if his respitory distress is causing the symptoms.  On Saturday night he pulled out his central line – not fun.  When he doesn’t have a central line he doesn’t get IV sedation.  Luckily they were able to get a new line in at the bedside and by 2am he was back on his sedation.

I have had to learn to be more upfront with everyone.  It’s clear that they want to do what is best for Ian, but communication isn’t the greatest.  And when I say it isn’t the greatest, I mean it is really bad.  It makes me sad for kids whose parents can’t sit by their bedside day in and day out to clear up the confusion and misinformation.  Because you really do have to be here every day to be able to attempt to keep it all straight.  Imagine the worst ever game of whisper down the lane – that is my life – everyday.

So – please keep Ian in your prayers.   And Justin and I for the strength know what to do next.  And for Owen – he asks everyday if his brother is coming home today.

Ian continues to have good days and bad.  I try to keep things positive, but I have to admit, he has been scaring us this admission.  Early this week, Monday I think, he had a fever for a good part of the day and had a pretty awful night with Justin.  Later that night our explanation surfaced as his picc line had yeast growing in it.  So – he had already been started on some heavy duty antibiotics because of the fevers as a precaution and they started him on some antifungals.  He got better within 12 hours and the result was the attached pictures – My happy boy back!!!  He was smiling and playing a lot with his toys.

However, when they took him for a new line, the anestesiologist let us know that they had a really hard time ventilating him even when he was sedated.  He did fine since they did not completely sedate him, and he was taking good breaths on his own, but this was not the first time that we’ve had someone have a hard time getting air into him.

Today Ian woke up himself – happy, smiley, content… but late morning had another fever.  Not a suprise as he is still fighting the line infection.  After IV tylenol and Motrin the fever had not come down and he started getting really irritable.  This led to him having trouble breathing and unfortunately – unlike before – there wasn’t much to do to help him through it.  He couldn’t accept breaths from the ventilator and couldn’t be bagged.  Because he wouldn’t ventilate, they didn’t want to sedate him and take away his respiratory drive to breath on his own.  After a while – and I really mean a while – he calmed on his own.  Another of the bothersome things that has been happening is that when he has trouble breathing his face swells – a lot.  At one point his cardiologist thought it might be because of increased pressure in his right ventricle.  It is really strange and again – new for Ian.  It has been a while since he has been in a situation where Justin and I really don’t understand what is going on with him.  His doctors don’t really seem to know either right now.

We are going to try a longer trach for him to bypass some floppyness in his trachea and he had a CT scan today to see if something has changed that is making it harder to ventilate him.

We’re continuing to do our best and so is Ian.  He suprises everyone every day.  If you saw how he breathes when he is in distress, you would really wonder how he does it.  He has a fight that I can not even describe.  I just wish he didn’t have to fight so hard.

Owen is also hanging in there.  He really wants his baby brother home and talks EVERY day about how much he loves Ian.

Ian is still in the hospital. Over the weekend he stopped peeing for a day and was retaining fluid. His central line started looking red and swollen at the site and he was miserable. As he got more and more swollen on Monday, had a much harder time breathing. He was also running fever which really didn’t resolve with tylenol. This got him into a viscious cycle. The fever made him breath harder and breathing harder makes him trap air in his left lung. All day Monday into Tuesday morning he struggled to breathe.

Early Tuesday morning we started some IV antibiotics for his central line and within a few hours his fever resolved and he started peeing again. Lots of peeing helped him start breathing easier and Tuesday evening they put in a new Picc line (an IV that lasts months vs days) and took out his angry looking central line. As of Wednesday he was breathing much much better and is SO much more comfortable.

His doctors are trying to think of some out of the box ideas to get the air out of his left lung. We finally have a group of doctors that ALL agree that he does best breathing on his own with just some cpap (positive pressure) to keep his airways stented open. We REALLY need to get him out of the hospital before he catches anything. The hospital is FULL and there seems to be a bad Rhino Virus (cold) going around that is bringing kids in. Ian getting a cold could be really bad.

We’re hoping for only good days from here so that we can get our guy home. Then we’ll go into isolation and start bathing in hand sanitizer and clorox wipes.

On a much more positive note – we had an AWESOME visit with Dennis, Katie and McKenna.  Mckenna is such a sweatheart and just filled my heart up. Pictures to follow later.

Seriously – I haven’t seen this kid so happy in a few weeks. He is loving life. It’s amazing how he can go from scaring us all to death to filling our hearts in such a short period of time! His smiles are so sweet!

Ian had visits from OT and PT today and he did great with both. The physical therapist has seen him a lot over the past few months and she was really impressed with him reaching for things. He couldn’t get enough of grabbing at my face today.

So…. When can we spring from this joint!?!? Great question!!! I’ll be asking that myself on rounds tomorrow. What we do know is that we have to be really sure that his diuretics are in a good place before we leave.
I think we are close. In the meantime we are making some vent changes that should make him more comfortable.

So – I want to thank everyone for the love and prayers resulting from my very vague Facebook post. At that time we were having some really serious discussions about Ian’s respiratory status and the dangers of doing some diagnostic tests that he needed. We were reminded yet again how fragile he is.

On Saturday we brought Ian to the hospital with what we thought was too much fluid. His face was puffy and he was having a hard time breathing when he was upset. After an extra dose of diuretics and an overnight stay for observation, he looked good, so we took him home. We woke up Monday to the swollen face being back and more irritability and trouble breathing. We decided an ambulance would be the best way to transport him back to the hospital. What an event that was.

When we got to the hospital they did some blood work and determined pretty quickly that he was dehydrated, not fluid overloaded. In hindsight, he really wasn’t peeing very well considering the diuretics that he was on, and his pee was very yellow. So they started IV fluids, and the next day he was doing pretty good. UNTIL he did actually get fluid overloaded.

Tuesday night, when we attempted to give him a bath, he had an event that came very close to an arrest. He always had a heart rate, but received a round of epinephrine and chest compressions 🙁

Wednesday morning he was puffier than I have maybe ever seen him. He was having ALOT of trouble breathing and they were having a tough time ventilating him since he doesn’t do well when they paralyze, sedate and take over ventilation.

When it came time to do a bronch to look at his airway, his cardiologist wanted to be sure about whether or not he would be a candidate for ecmo, whether that is something we would want and have the surgeon on standby in case he arrested and they couldn’t get him back. We were terrified.

Luckily he did well with the scope and he also did a great job peeing all night last night while they kept him very comfortable with sedation. Today he was almost back to himself. He is still having some trouble breathing and we are still very worried, but he is comfortable, and happy,

Thank you all for your prayers and support. We are very grateful to all of you and to the big guy upstairs who is watching over our baby boy.

Tomorrow Ian will be having a CT scan and a lung perfusion scan. These things are always really rough on him, so your continued prayers are very much appreciated.

We are all back under one roof!  Ian was discharged Thursday evening on inhaled and IV antibiotcs, but he is doing great.  It’s amazing how much different Ian is at home.  He spends 99% of his day smiling and happy.  He loves his big brother smothering him with love and kisses.  And Owen is beside himself.

The past few days have been fairly uneventful, so I don’t have much to say, but I do have pictures to share!

So – We had a great 5 days at home. And I was avoiding an update because I was hoping we would be in and out before anyone (including us) even noticed that we were back at CHP. Ian was readmitted on Saturday because he was requiring more oxygen and was petty irritable. He had had thicker secretions (basically snot) since we got home, but we were told to just “watch” him and he was honestly fine so we did just that.

Generally when Ian has something respiratory it is Psuedomonas.  Psuedomonas is a bacteria that is commonly colonized in kids with trachs.  Its really just something we will have to deal with as long as he has plastic in his airway.  Hopefully over time, everyone will be comfortable with us managing it at home.  It took a few days to get him on the correct antibiotic, but we are hoping to be sprung today to get back to the comforts of home and enjoying time together.

Yes – you read that right!!! Ian is home!! And he is doing great!! He has been spending ton of time with his big brother, who really just can’t get enough of him.  Its a little bit crazy with his extra equipment, but so so worth it.  It’s weird because a few people (strangers) that I have come across over the past few days, mostly with organizing his equipment and supplies, have responded with pity saying “oooohhh, poor baby.”  It’s really taken me by surprise and I guess I have a whole new perspective, because I just think about how far he has come and how blessed we are to have him here and home with us.

Ian was discharged on Tuesday and has done great!  The nursing staff from Interim Home Health did a GREAT job getting us organized and have made sure that we have nurses to help every day and night.  We have really had an awesome first few days.  We have lucked out with nice cool weather and Ian has been outside everyday since being home.  We spent most of the morning outside today with Owen and our neighbor and her grandson.  Owen and his little buddy Liam were running around and swinging while we say on the bench passing around the baby.  So long overdue!!

Some pics of the last few days….

So Ian had his Cath on Tuesday. The cath itself went well. He did great. His heart function is good. However when they went to balloon his left pulmonary artery, they lost ventilation to his left lung. Once they pulled back on the catheter, he ventilated fine. So – his left PA and his left bronchus are literally right on top of each other. Doing something to improve one, negetively affects the other. Frustrating to say the least.

Tuesday overnight was rough. He was paralyzed and sedated to give his lungs a rest and still was not ventilating well. He looked fine, but his blood gases were awful. Blood gas is the measurement of oxygen, carbon dioxide and acidity in the blood. It tells us how well he is ventilating. His CO2 was way too high and his PH was way too low 🙁 Scary. In the morning his Dr decided maybe it would be better to just let him wake up – and it was. He immediately started improving. But wednesday and Thursday he was REALLY puffy from the sedation, the stress of the procedure and the extra fluids he was getting.

Today he is MUCH MUCH better. His gases are back in an acceptable range for him – which would not be acceptable for a healthy person, but his kidneys have learned to compensate for his high CO2.

The doctor today told me she’d like to see him stable on his home vent for a week before sending us home. So – now that his infection is better, his tracheitis should be gone and he is not withdrawing from narcotics, we SHOULD be able to get him home in about a week.

Please pray for Ian to good for the 7 days ahead – really maybe 9 since they won’t discharge on a Friday and he will probably have to behave all the way until Monday.

The Dr in the picture is the Anesthesiologist taking Ian to cath.  He said he’s really getting tired of wheeling him back to the OR.  So – No More!!

We could not be more happy, greatful, thankful, thrilled with the turnout and donations for the Congenital Heart Walk!!!  Our team was HUGE and raised over $3,000, making us the 4th highest team for fundraising in Pittsburgh.  Every single person that was there or made a donation made a difference.  Being involved in a lot of  different groups associated with CHD, you always hear how CHD is so severely underfunded, which is true.  But events like the walk this weekend not only raises funding but it will also raise awareness.  Never in a million years did I ever think we would be living this life and it is HARD.  People ask how we do it.  I honestly don’t know.  Its not always graceful, but I am proud of us.  And, I know for sure that we could not be doing what we are doing as well as we are without the support of our family, friends and friends of friends.  And it showed on Sunday.  So many people from so many parts of our life showed up to support us and Ian.  So – I know Thank You doesn’t quite cut it, but I will say it anyway!!  THANK YOU!

It was such a great weekend!  We got to meet our new baby nephew and cousin Jack.  Owen asked if he, Ian and Jack could be best buddies.  I sure hope they do end up loving each other that much.  It was a very LONG overdue meeting and we had a great time.  I really can’t wait for Jack and Ian to be rolling around on the floor together.

On to Ian – He is doing pretty well.  He has stayed on CPAP and has done great.  Yesterday he had a little setback which we had been building up to over the past few days.  He had a fever late last week and the cultures that they did grew our old friend Psuedomonas.  Ian had increased secretions and seemed to be working a bit more over the days following and yesterday he really seemed to be not feeling well and was pretty swollen.  The swollen part may have been a result of a change in meds, but the two together really kicked his butt!  Since last night, he has been resting comfortably on BiPap, which just adds a bit of pressure behind each breath that he takes.  Today he is not quite back to himself, but he is feeling MUCH MUCH better

So – we are planning for discharge.  However, a lung perfusion scan last week revealed that though Ian is ventilating his lungs evenly (50/50), the blood perfusion is only 25/75 (25 to the left, 75 to the right).  The mismatch is really not ideal so cardiology and the ICU attendings are recomending a cath before we leave.  GRRRRR.  Some kids leave the hospital the same day as their cath or the day after.  We just know that this is not Ian’s way.  Every procedure is a setback for him.  So, its disappointing, but he is still much much better than he was a few months ago and we are so very grateful for that.

Ian is back on Cpap and is very very comfortable.

The end of ther week has been very very busy for Ian.  On Thursday Ian was scheduled to go to the OR for a wound washout to prepare for a muscle flap chest closure on Monday.  The muscle flap surgery consists of  pulling his chest muscle over his sternum in order to give it more support to close it.  When they got him into the OR on Thursday, the wound looked good, so they decided to do the closure right then instead of having him come back on Monday.  This is huge because he wont have to go under ansestesia again.

Ian also had a bronc on Friday which showed that the distal malacia (floppiness) in his airways is compressed.  The splint that Ian got in Michigan does not go down into his distal airways.  This explained why he was experiencing some distress when trying to poop.  The attending in the CICU, Dr Dezfullian, called Dr Green to discuss it with him and he confirmed that the compression was not there when they bronc(ed) him in Michigan.  Together they determined that the increased ventilator settings that they had put Ian on to help him through his withdrawal and infection, were actually causing him problems.  The increased pressure was pushing air down into his distal airways that he could not get out.   Dr. Dezfullian immediately started weaning Ian’s ventilator rather quickly to get him back to cpap with an increased peep so that he could get rid of the extra air in his lungs.  He warned that this would take some time, but we were able to see a difference in Ian’s demeanor almost immediately.  While he still gets upset when he has to poop, he no longer has trouble breathing. He calms very quickly and easily.

Ian has had a really good few days!  We continue to work to get things ready for Ian to come home.  Hopefully very very soon.

Doing PT with Daddy

Swinging in the momaroo

Taking Daph for a walk in the woods

 Big smiles

First and foremost I want to say – I have the worlds best husband and he is an even better dad!!  Justin spent the morning with Owen and is now at the hospital with Ian.  I hate being negetive, but it stinks big time to have ANOTHER holiday “celebrated” with one parent at the hospital and the other at home.   Grrr.

Now onto Ian.  We have had quite the eventful week.  Ian has ALWAYS had issues when he poops.  Starting from when we were at home back in January when he started randomly waking up in the middle of the night screaming.  These gas and pooping issues have almost always been what precipitates his “events” with respiratory distress.  SO – over the past week he has started having these “events” with almost every feeding.  They are not to the extent that they were before his airway surgery, but he gets pretty purple/grey and can start gasping like he did before.  He is always able to recover, but it can take him anywhere from a few minutes to 45 minutes until he eventually tires out.  We are now working with GI.  They are going to do a study to rule out some bowel issues and we are going to try to get him on a bowel regimen so that doesn’t have to work at all to poop.

Because he has been using so much energy to poop, he has been losing weight and not healing.   When his wound vac was changed on Friday the surgeons said it was no better – no worse.  They stressed that he needs good nutrition to heal.  So – they have added a bunch of extra vitamins and protein to his feeds.  Between the bowel regimin and the extra nutrition we are hoping that he will start healing.  It has always been our experience that once the wound starts healing, it takes off.  Fingers crossed that Tuesday’s wound vac change shows some progress.

Now – the fun stuff.  The past two days Ian has been in pretty good spirits overall.  He is smiling and happy when he is awake (and not gassy or pooping).  Our attending last week prescribed TV for him 🙂  He said we need to remember that he is 7 months old and try to do some normal things with him.  So – he said – find him some colorful movies to watch.  His nurse that day promptly pit Planes on the TV for him.   Last night I asked his nurse if we could put him in the sink  and she suggested getting baby tub!  So – today Ian was submerged in the bath for the very first time.  I think he kinda liked it and we are definately going to try to do it every few days.  I also think it may feel good on his diaper rash. For about 40 minutes he wasn’t attached to the monitor and he acted like a normal baby.

And now, some pictures….

Happy Father’s Day to my husband and all of the other great dads out there – especially the ones who have taken time away from their own family to contribute to Ian’s care – as much as we don’t love being at the hospital for holidays, the staff ALWAYS makes it just a little nicer.  We also know that some of the doctors that have saved Ian’s life have taken time away from their own families to be the very best in their field, and we are very appreciative.

Today has been all about trying new things…

Owen decided this morning that he wanted to go to the hospital to see Ian for the second day in a row.  So – instead of the normal of holding Ian in a chair next to his bed which is boooorrrriinng for Owen, I gathered up some big beach towels and fluffy blankets and we got Ian down on the floor for some play time.  He layed down for a little bit, but mostly sat and looked around.

Next was his try on the home vent.  Ian’s RT for the day suggested during rounds that instead of weaning him from the hospital vent, we try him on the home vent.  There is a good chance that Ian will go home with some sort of settings on the ventilator – at the very least at night.  Since the home vent is so much different than the hospital vent, it makes a lot of sense to start weaning from the home vent since he would likely need increased settings to transition anyway.  His settings on the hospital vent were really very low, so today seemed like a good day to give it a shot.  He’s been rocking the home vent for about 4 hours now, and he’s awake.  The most he did on the home vent before his airway surgery was 2 hours and as soon as he woke up, he flipped out.  Then he had to be sedated for the following 4 days.

So – today we have progress.

Being in the ICU though we are surrounded by some very sick kids.  None of our old buddies are here now, but the unit is still pretty full – with lots of nice people.  One little boy had a very rough day and could use some healing prayers.  His name is also Ian.

Ian is making progress with his mid sternal wound healing.  The antibiotics and wound vac are working.  He is feeling better, and the wound is looking better.  Thats the good news.  The bad news is that the nurse practitioner who changed it last week said it was one of the worst infections she had seen.  And they have not ruled out having to re-open it and  close it again.  This has guaranteed us a few more weeks in the hospital.  Grrr.

On a “normal” baby note – Ian is also cutting his first two teeth…. pretty exciting.

We are all very ready to have Ian home.  So – we’ll continue making headway getting the house ready. We got approved for our nursing for work and so that we can sleep at night, so we will be setting Ian up in the dining room instead of the bedroom that we had intended for him to make it more comfortable for everyone when we have nurses in the house. Justin and I will be taking turns working from home in the short term so we have to get our work space, which had already been started before Ian was born, finished.

Also – I just want to take the time to thank every single person who has sent money, gifts and prayers to our family. We used part of the money for travel back and forth between Pittsburgh and Michigan, for the hotel room that we stayed in while Owen was there and for Ronald McDonald house which is where Justin and I stayed while in Michigan. We are now continuing to use the funds to buy things that we need for Ian to be at home. Insurance will cover all of the medical supplies, but we’ll need to get organized on where to put all of them and we’ll need to make the dining room a comfortable space for him until he no longer has the trach. We’ll also be investing in a generator just in case we lose power while he is on the ventilator. We are so so appreciative and thankful for the support.

Ian is back “home” at CHP!!!  Our transport to Pittsburgh went well.  I even got to hold Ian for a fair amount of the flight.  He was crabby, but a totally different situation than the flight over.  The transport team was excellent – no big surprises there!

A big huge thank you to the doctors, nurses and therapists at Mott.  So super wonderful.  We are so grateful for the care and hospitality.  Oh – and for the little splint that is making it so much easier for Ian to breathe!

Ian has had a week packed FULL of ups and downs.  He started off the week being welcomed back to the CICU with open arms.  Its strange to show up at a hospital with your 6 month old in an ambulance and be grinning from ear to ear.

Little man started off the week with a wean to the ventilator and an hour and a half trach mask trial.  Then he plugged his trach and we had to do an emergency trach change.  This is something that can happen to kids with trachs.  Because the trach is plastic it collects mucus, which is why we have to suction it throughout the day.  Sometimes the secretions can get a little thick and get stuck in the trach.  This was a first for Ian, but we are really really glad it happened in the hospital and glad that both Justin and I were standing right there so that we don’t panic if/when it happens at home.

Fast forward to the remainder of the week.  Ian was really not feeling well at all.  He was waking up crying every time and pretty inconsolable unless he was being held.  Even when he was being held he wasn’t happy – just content.  It turns out his mid sternal incision is still infected.  I have to be honest it has been really tough because we came back to Pittsburgh with such high hopes that he was doing so well that we would be home soon.  When we didn’t really know what was wrong it was really frustrating.  He has now been back on antibiotics for over 24 hours and is back to his happy self.  He slept well last night and woke up with a smile :).

Owen had a great time this weekend having both of us at home.  He played a ton outside with our neighbor’s granddaughter.

Lets hope this is the start to a much better week.  We have a jammed packed schedule of training and things to do to prepare for Ian to come HOME!!

Ian has been feeling much much better the past few days!!  He’s back to himself and ready for transport to Pittsburgh!  Thanks for the prayers.

Owen is home having a great time with Noni and Poppy!

First – Ian is doing very well. He is still having fevers, which is scary. But he is otherwise continuing to recover.

We have two Ian’s Infantry teams participating in the Congenital Heart Walk this year. One is in Pittsburgh and one in the Philadelphia area. With any luck Ian will be at the Pittsburgh walk. Our Philadelphia family members will be representing at the Philadelphia area walk.

We have designed T Shirts for the walk and for anyone else that wants to order one.

We are so grateful for the level of participation and for all of the donations that have been made so far. It is so important to us to raise awareness and funding for research for Congenital Heart Disease.  And – It will be FUN!!

Congenital Heart Walk
Pittsburgh Registration: http://www.kintera.org/faf/home/default.asp?ievent=1095325
Deleware Valley Registration: http://www.kintera.org/faf/home/default.asp?ievent=1099057

Adult T-Shirts: http://teespring.com/ianorbich
Youth T-Shirts: http://teespring.com/iansinfantryyouth

Ian’s recovery has really started to take off. Just 5 days post op and he is already doing “sprints” off the ventilator. Yesterday the team tried for another wean from the ventilator and Ian handled it beautifully. So – they tried for another. Then a few people showed up in the room and I was worried something was wrong. I have caught on to alot of the terminology, but they seemed concerned that he was “acidotic.” They way I understand it now (which could be incorrect) is that as they were weaning, he was doing so well that the ventilator was causing his body to retain too much acid. He was basically telling them to keep going.

He is now on VERY minimal settings and did good with a “sprint” off the ventilator both last night and this morning. A sprint is where they change the settings to be so minimal that they are simulating him breathing on his own.

I think Dr Green was optimistic that Ian would go home without a ventilator, keeping it on the table only if needed. Justin and I have kept the ventilator top of mind with the possibility of no vent as a best case. I don’t think anyone expected him to progress this quickly.

The only thing that is concerning now is that Ian is running some low grade temperatures over the last few days. They could be caused by a few different factors:
– Withdrawl from pain/sedation meds. This is a strong possibility since he has been on them for SO long.
– Infection in his trachea – he grew some psuedomonus from his tracheal aspirate which is common for kids with trachs. This is being treated with antibiotics. The great news is that he has made significant respiratory strides WITH an infection. Before the splint infection would send him over the edge into life threatening respiratory status.
– Infection in his chest – This would be most concerning because if the area around the splint were to get infected the worst case would be that it would have to be removed. Since Ian had a previous mid sternal infection this has to stay in the back of our minds but his fevers haven’t been terribly high which is encouraging.

Last but not least, please keep Ashley, Trevor, Oliver and their family in your prayers this week as they say goodbye to their precious baby boy.

Ian did great today and so did his surgeons!!!  He went back to the OR right on time at 7:30.  They first did a broncoscopy to take a final look at his airways.  During this procedure they decided it would be best not to splint the area of his trachea which has both scar tissue from his tracheal reconstruction and some malacia.   Most of the reason is that it would be difficult to remediate the scar tissue with a splint.  Next they opened his chest and pulled his aorta off his airways.  As suspected, this did not help his airway problem.  So, they placed the splint into his left bronchus.  One of the surgeons said – “they look like you could drive a truck down them”.

The surgery, from the time that they cut, to the time that they closed his chest was 2 hours.  Everyone was thrilled with the results!  I have to be honest, about two minutes before the surgeon came out to update us,  I had a moment when I panicked thinking “what if this doesn’t work.”  After Ian came back from the OR he had a little bit of a setback with some air in his chest cavity.  This is called a pneumothorax.  Because of this he needed a chest tube. This should resolve in about a week. We are not expecting a ton of progress over the next few days.  Just resting and recovering.  Thanks for all of your thoughts and prayers today!!

Surgery is first thing tomorrow morning.  We’ve been asked many many times if we are excited.  I always feel bad wanting to say no, but the truth is, I’m not excited.  I am scared.  Ian will be having his 4th major surgery tomorrow.  His 3rd surgery on bypass.  While we are so so grateful that Dr Green, Dr Hollister and Dr Ohye have developed this solution, we are aslo still parents.  And we don’t want to see our baby go through any pain.  That said, we are hopeful and optimistic that this is going to work, and we will be home as a family in a month or so.  

Today, we had a short interview with the PR department at the hospital and we met with Dr Green to sign consents.  Dr Green is hopeful that Ian won’t need his trach post surgery, but if he doesn’t that will still take several months to figure out. 

While we continue to fight alongside of our tough little man, our dear friends Ashley and Trevor will be saying goodbye (for now) to their sweet little angel Oliver.  We are heartbroken. These boys have had such a tough fight.  Oliver is an amazing little baby with an amazing family.

I will try to keep everyone updated tomorrow.

Ian had a very rough weekend with his daddy.  I was home for the weekend with Owen while Justin was in Michigan with Ian.  On Friday when Owen and I left we could tell that Ian wasn’t feeling great.  He had several episodes throughout the morning and after we left he only got worse.  By Friday he had a fever and was really miserable.  His cultures over the weekend grew staph which atleast explained why he was so miserable.  As soon as antibiotics were started he began feeling better.  On Friday Dr Green also let us know that the first printing of the splints didn’t go as expected and they were going to redo them and that it may put the May 2nd surgery date at risk.

I got back to Michigan yesterday and Ian was feeling much better.  He had a great day today and late in the day even decided that he was going to give us a show –  smiling all evening at everyone who came in the room.  Dr Green confirmed that surgery is going to be moved to next Monday morning at 7 am.  So a few extra days for the perfect splint for Ian’s airway.  I’m really hoping that he’s feeling good between now and then and he gains some weight.  When he has bad days he uses all of his calories to breath, so despite the increased calories that he gets, he’s right back where he started when we got here.

Last but not least, we need lots of positive thoughts and prayers for our dear friends back at CHP.  Our little buddy Cohen is finally on the mend and will hopefully be headed back home soon.  He’ll miss his big brother’s birthday, which we know from Owen’s birthday is so so hard!  Oliver continues to fight.  His parents are facing tough decisions about his future.  We also know all to well the feelings that this brings.  Oliver has such a great mommy and daddy and they are exhausting all options to ensure they are making the very best choices for him.  

Over the past 5 months Justin and I have entered into a whole world we never wanted to know.  Sometimes I think we are still in denial that we are even part of this reality.  The other families we have met are no different.  We all got pregnant thinking we would be bringing home a healthy baby, and here we are, months later, all fighting this crazy fight for our kids.  We often get comments about how strong we are and people not knowing how we do it.  If you saw the look on Ian’s face today, you would know exactly how we do it… I tried to get a picture, but it doesn’t even come close to doing it justice.  

Doing some therepy

This one was just too funny not to share…

Why are you trying to make me push the button?!? I have people for that!

Ian had his Bronchoscopy and CT Scan today.  He did great!  Dr. Green, the ENT who developed the splints, came by after and confirmed that he still thinks Ian is a great candidate for the splints.  This week he will work with his team on printing the splints and sending them off for sterilization.  We still have a tentative surgery date of 5/2.   Over the next two weeks we’ll rest, do PT and OT and feed and hopefully put on some more weight for surgery. (Ian will put on more weight – hopefully not me.  They made me weigh myself for the flight and that was NOT pretty) 

The doctors and nurses in Michigan have been so good to Ian and I over the past few days.  I continue to be amazed by the expertise and compassion of people in this field.   

Back in Pittsburgh, our little buddy Ollie is having a very rough time.  I have mentioned Ollie a few times in my facebook posts.  He was born just two days before Ian and has been in the hospital since birth.  Ollie coded last night right in front of his mom Ashley.  He’s doing better today, but could still use all of the extra prayers he can get.