Thursday, January 31, 2013

January 30 - 31, 2013

Yesterday afternoon, we had a family meeting with the PICU MD's and Dr. McGinley, Ian's pulmonologist. ENT was not able to be at the meeting, however, they did stop up earlier in the day while I was at work, so Brian and ENT called me to have a phone conference to answer some questions. After speaking with ENT, Brian and I were able to have some time to chat before the family meeting. In some ways it was a difficult decision while in other ways it was not...Ian will get a tracheostomy tube. During the family meeting, it was thought this would happen next week; however, the ENT, Dr. Tunkel, has an opening tomorrow at Ian will be in the ER for this, GI will also be involved to change his GT over to a Mickey Tube. Ian will remain in the PICU for 5 - 7 days after surgery and then will be in transferred to rehab for a while for tracheostomy training for Brian and I...oh yea and Ian. For Brian and I, this has helped to provide some closure with the daily back and forth of what will be next and when we can get Ian home. We are still looking at the potential of a few months before this will happen but there is a light at the end of the tunnel; we are hoping once we chat with Ian later today we can provide him with that light at the end of the tunnel as well. 

With the tracheostomy, Ian will still be able to do everything he was doing before hand, if not more. We have spoken with other families whose children have gotten them...they have told us they have seen the "twinkle" come back into their child's eyes. As well as the spunk...for those of you who know Ian well...that "twinkle" and spunk have slowly left...we are hopeful that it will come back. Ian should be able to speak and eat with the trach...that will take some time due to healing and training but we are looking forward to the little boy who used to talk your ear off, talking it off again.

Ian just had a work out...physical therapy just came in and got Ian into his wheelchair for a very brief time...he could not get comfortable in it now he is back in bed. I am going to go sit with him...

We will do our best to keep everyone updated tomorrow when everything is done.

Martha & Mary's....

A very special thank you to all who attended Martha and Mary's last night. The overwhelming feeling of love when I walked in there and saw everyone, it was packed...just means the world to us. I can't wait to get the cards and show Ian just how wonderful and special he is to so many people. Thank you Ms. Cathy and Ms. Susan  or working to put it together. Thank you to Martha and Mary's for hosting and letting us be the 1st ones to help you run out of something.

Tuesday, January 29, 2013

Tuesday, January 29, 2013

Well today started off with rounds which weren't great. Ian's left lung has collapsed a little bit again. We were all very excited yesterday with his x-ray and then came the one this morning. So they did not make any changes, no sprints today, all medicines stayed the same. Ian's moods have been up and down, I guess you can't expect anything different, we are trying very hard to work with that and keep his spirits up. I had an IEP meeting to start the process of Home and Hospital, I am hoping once this starts it will help Ian's moods. In addition, we will be meeting the doctors tomorrow, the PICU doctors, the Pulmonologist and the ENT's to discuss next steps. We don't know what lies ahead of us but we will continue to take everything one day/step at a time. 

Everyone have a good night....

Monday, January 28, 2013

Monday, January 28, 2013

Medically the past few days have been the same for Ian. They continue to do his pulmonary treatments every 2 hours and get lots of good gunk out of his lungs. He is tolerating all of them well, his eyes are moving and watching everyone and everything that is going on in the room. A machine beeps and the eyes start to move to figure out which one it is and if "he" did something. Most of the time he has not done anything, it is just an IV finishing or the machines like to beep when he is getting his treatments. They continue to get Ian into his wheelchair at least once a day, it still stirs up lots of gunk but he remains stable when transferred back into bed. The past few days they have been running a NIF (negative inspiratory force) which reflects the strength of the diaphragm and other inspiratory muscles. They are looking for his to be around a -20 and he has been ranging from a -7 to a -10. His chest x-ray from this morning was clear, you could see both lungs; here is to hoping it continues to stay that way and we can work on strength. In addition, they have started doing Ian on sprints, this is when they lower some of the ventilator settings so he has to work more. The hope is the more sprints the stronger his lungs will get. We are still working and hoping for extubation but as each day passes... the potential of not being able to extubate and a trach become more of a reality. 

For me last night was a difficult one, the pain in my heart was huge, finding a way to ease it is something I have struggled with over the years, especially when he is sick. Watching your child in pain; struggling to do things he used to be able to do; seeing the loneliness in his eyes; the fear on his face when something is happening, he does not know what is going on and you can't explain to him (because you don't know what is going on yourself as well as you just can't explain it). Listening to him scream in pain, saying it's all the way down to his bones; having him as questions and not being able to answer them or if I can answer them, not being able to answer in a way he is going to understand and not frustrate him more then he already is. Over the years, we have tried to do what we feel is in Ian's best interest with the information we have at hand...sometimes the lack of information we have at hand...we are potentially at that crossroad again; making another decision for Ian with the information we have at hand....

Thank you to all who have continued to offer support...we still have a long road ahead of us with this bout...

Saturday, January 26, 2013

Saturday, January 26, 2013

Nothing major to report medically for Ian. Today was quiet from that stand point. They are holding steady with his care and watching to see how his body/lungs continue to heal.

Ian did have a visitor today...we did have to wake him up from a nap when he got here but I think once Ravens G Kelechi Osemele got here, Ian was okay with that.

Look at Ian's hand in his....

KO signed a Ravens football and gave it to Ian.

Thumbs up for the Ravens...

Daddy and Mommy got to take a picture with Ian and KO as well. He was a wonderful man, took the time to talk to Ian and find out what he likes to do...besides the obvious of Spiderman and the Ravens.

Aunt Susan got in on the pictures also ....thanks to her friends from Massage Envy....KO knew about Ian and came to visit him. The nurses and therapists who have been working with Ian for the past few weeks said they saw him smile for the first time as well as move his arms and try to move his head....

KO and all the Ravens...go to Super Bowl and win it for Ian.....we are all rooting for you....XO

Friday, January 25, 2013

Friday, January 25, 2013

Today was pretty much status quo...Ian sat in his wheelchair for about 10 minutes today. He tolerated well, afterwards needed a lot of suctioning but that is good as it helped to get more gunk out of him. His x-ray showed marginal improvement from yesterday. We spoke with Ian's main Pulmonologist today to discuss the results from the bronchoscopy yesterday. They are not rushing into a decision about extubating...just continuing to see how Ian's lungs respond to everything.  Ian got to spent the morning with mommy and the afternoon/evening with daddy. Becca got to spend most of the day at school...thanks to a 2 hour early dismissal, she got to go home to her "other" home until I got to pick her up to spent the evening/night with her...time to sign off and go cuddly with my beautiful little girl.

Thursday, January 24, 2013

Thursday, January 24, 2013

Ian handled the bronchoscopy went well today. The doctors did not get a much gunk as they were hoping. There did not seem to be any major plugs like they were hoping. While doing the bronchoscopy, they did a test to see what his lungs could handle by playing with the vent settings. This did show that when the settings were lowered Ian's left lung did seem to start to collapse and when the settings were raised his lung seemed to function better. While in our guts, we know what this means, we have not had any formal conversations with doctors, we don't know what this means or where we go from here.....everyone have a good night. I am off to sit with Ian and watch a movie.... 

Who does he look like? This was not planned, it was done by the nurse.

Things You Should Know About A Special Needs Family

I found this a long time ago and have edited to fit our family and my really does hit home with things to know about a special needs family.

We’re ostracized. Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because he can’t protect himself the way a “normal” child can. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child is around. We’ve been verbally abused by stangers who see us getting out of the can see the “thoughts”; what are they doing parking in a handicap spot...before Ian rolls down the ramp.

We end up by ourselves at parties, whether he is with us or not. If he’s with us, than we’re constantly watching him to make sure he’s okay or tending to his needs. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s hard to find people who can care for him in all the aspects he needs. Sometimes its even too hard for those closest to us to understand just how stressed out we are.

We’re jealous. We can’t help but feel a tiny pang of jealousy every time we see another boy do all the things Ian used to do or should be doing.....

Know what’s even worse? It make us feel guilty as hell, because we’re so proud of everything he has accomplished. This little boy has worked harder than most other children do to accomplish everything he has -  and we wish it wasn’t so hard. We hate that little pang of jealousy hits us because this “normal” child in front of us didn’t ask for our little boy to have a chromosome mutation. This "normal" child doesn’t realize the thoughts running thru my mind, when he talks/walks/runs up to me. And then I have to put that thought as far away as possible because it’s not fair to that child or to Ian. And then I hate myself for those thoughts running thru my mind.

Sometime in the future, if/when Ian or Becca reads this, I want both of them to know that we have never regretted a second with Ian. They have made us become better parents and better people. They amaze us every day with each new accomplishment they have piled on top of all their other accomplishments.

We’re scared.  We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade his quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive - for better or worse.

We’re stronger than you realize./We’re more fragile than you realize. We've had to watch him lose skills he was once great at...we've had to watch Becca watch him lose skills he was once great at. We’ve had to deal with watching our child get stuck over and over again and endure more tests and days laying in a hospital bed. We’ve given him over to doctors to many times to perform some sort of surgical or medical procedure that involved general anesthesia. We’ve waited in fear for the doctors to return to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on our son, saying things are considered custodial care or not medically necessary.

We’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us; even 10 minutes before - but for some reason cut through us at that very moment. We’ve hurt each other when our actions haven’t lived up to each others expectations or our own expectations.

We’re human. So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends to a special needs family somewhere else in this vast world of ours: remember we are all human...we do our best to make our family life “normal”.

Delay Update from Wednesday, January 23 into Thursday, January 24

So overall yesterday was a good day....the doctors decided to try a different approach with the ventulator settings and such throughout today and possibly next couple of days to really optimize what Ian's lung can and can't do. That being said we are most likely looking at a few more days of intubation. We all want to give Ian the best chance for extubation and success afterwards. Ian's white blood count has come down, so the antibiotics are working, all a good thing. He continues to remain comfortable and has gotten pretty good at communicating with us....every once in a while you will see his hand start to hit the side rail....his eyes say so much. I never realized how much one can talk thru their eyes. We have begun talking with the doctors about possilbe length of stay, there are many factors which play into this, we are looking at a minimum of 2-3 weeks depending on how Ian's body continues to heal. A trach has been a continued conversation with many of the doctors as well as between Brian and I and other family memebers.

The pain doctors are continuing to work on his feet and leg pain. One of his medicins has been discontinued in the hopes of an anxiety medicine can be started. We will just have to wait and see how that all plays out along with everything else.

As for was Wednesday, BINGO....Ian played with Brian and Nana...and won another remote control car, a thunder tumbler rally car....can't wait until we get home for him to play with out....Andrew, Logan, Avinoam and Ryan....a few more cars to play with.

Ian got out of bed into his wheelchair for about 20-30 minutes yesterday. He did well, however, all the movement and change of position stirred up some more gunk....his numbers did fluctuate and the respitory therapists got alot of gunk out. After that he spent the rest of the day/evening with daddy...

I have contacted school and will begin working on the paper work for to start home and hospital. Ian has to be out of school for 4 weeks in order for this to start, since we are in week 3....we can get it moving.

As for today, Thursday, January 24th, we just finished rounds and they are doing another bronchoscopy, with the anticipation of extubation. Brian has seen his x-ray from this morning and said it looks good, slight improvement...we have gotten pretty good at knowing what they mean....but we are still not the doctors. It was explained to us that there are 3 airways which go into the lower lung...from what they can see in the x-ray, 1 is open and getting air thru but the other 2 don't seem to be. They are hoping to clear out any mucus plugs in the way of those 2....the other possibility is that there are no plugs and he is further along in the virus process and this just maybe the way his lungs we will just have to wait and see....

We are looking at 30 minutes for them to get started.....

Sometimes the hardest part isn't letting go but rather learning to start over; only time will tell what our "new normal" will be.

The Feelings of Helplessness by Daddy

Being a parent certainly brings its joys and frustrations.  We want so much for our children and we want to be able to give them all that they want and deserve with as little obstacles as possible.  It doesn’t mean we will just give them everything on a silver platter; it’s just that we want them to try their best and make the best effort possible to achieve their goals no matter what they are.  However, with that come frustrations and feelings of helplessness, at least for me.  If you have ever had that feeling you understand what I am talking about…it’s that feeling of wanting to help your child(ren) with every situation but knowing deep down that there really is nothing you can do to help.  Of course, you can talk to them, provide encouragement and just plain support them in every way possible.  But ultimately it is up to your child specifically to overcome whatever obstacle to achieve that goal.  That goal can be anything from getting good grades to recovering from an illness. 

By now, I am sure you are all wondering and asking where this little schpeal is going.  Well let me tell you.  It is no surprise to anyone and everyone the trials and tribulations my family has been facing the last few weeks with Ian being sick and in the PICU at Johns Hopkins hospital.  Tonight, Wednesday, I had those feelings of helplessness earlier this evening when, at one point, I look in to Ian’s eyes and could see the sadness and despair in them.  As he just stared off in to space or at the television, I could tell he was not in a good and happy place.  I immediately tried talking to him, telling him that everything was going to be ok of course but he had every right to be sad and upset.  I mean come on; the boy has been an absolute trooper lying in bed for close to three weeks straight 24/7.  However, I made sure that he was aware that both mommy and I, among all our friends and family, were with him every step of the way.  I could tell he heard me and knew what I was saying but that look in his eyes wasn’t going away.  So with that I had that feeling of helplessness and I just sat in the chair next to his bed, rubbed his leg and watched television with him in silence.  To help maybe better his mood or give him something else to focus on I started reading his Stink book to him.  With that he fell asleep for maybe 15-20 minutes which was good.  So I just continued to sit with him while he slept but my helpless feeling remained. 

After a couple of hours, Ian pointed out that he needed his “pants” (aka diaper) changed.  So his nurse was in the room and we started to change him.  During the process I noticed the vial connected to Ian’s G-tube for drainage seemed to be full and in need of emptying.  So I looked at Ian and asked him flat out (jokingly of course), ‘Why didn’t you tell us it needed to be emptied?’  He raised his left hand, eyes wide and clearly looked at me as in ‘DUH, how am I supposed to tell you.’  When I saw his “answer” I then asked him, ‘What’s wrong, you have a tube in your throat or something?’ Which, in a way only Ian can do, he once again raised his left hand, eyes wide and appeared to point to his tube as in ‘Well as a matter of fact I do!’

Just seeing how big and wide his eyes were made those feelings of helplessness for my son begin to dissipate.  It only got better when I gently pinched his nose and Ian raising his hand to pinch mine back.  The feeling completely vanished when I would start laughing and I saw a genuine smile upon my little boys face for the first time in weeks without asking him to smile.  Only thing that made it better was having him also stick his tongue out at me. 

Just seeing this total mood transformation from Ian, even if for a short time, once again makes it all worthwhile to sit here with him day in and day out no matter how long it takes for him to recover as best he can so we can bring him home.

Therefore, as a parent, no matter how much those feelings of helplessness overcome you just remember who it is all for.  It’s for all those smiles, bright eyes and, yes, even tongues being stuck out at you. 

Tuesday, January 22, 2013

Tuesday, January 22, 2013

Today has been good...Brian and I, along with both sets of grandparents met with the PICU MD's and Ian's pulmonologist to discuss a plan for Ian. We all agree that Ian deserves a chance to show us what he can do...his x-ray was okay compared to yesterday. They are going to start decreasing his ventilator settings to see how he handles it. They will take another x-ray tomorrow morning to see how his left lung handles it. We are hoping it will stay open as the ventilator pressures are decreased. As long as he handles it well, and the test the respiratory therapists do come back okay then extubation will take place. We are hoping sometime tomorrow will be the day....many other things depend on how this goes. 

Ian's white blood count was down again this morning, so the infection is on its way out.

Ian spent the day watching Harry Potter with grandparents sitting next to him as well as Brian and I. Brian will sleep home tonight with Becca and I will camp out at the hospital with Ian....who knows what good shows we will get to watch tonight.

Tomorrow is Wednesday and we all know what that means....BINGO!!!

The outpour of support has been overwhelming, thank you to all those who are doing fundraisers and/or talking of putting one together. If anyone is interested in learning more about them, please let me know and I can get you information.

Monday, January 21, 2013

Monday, January 21, 2013

Last night and today have been good, again the goal is to still keep Ian comfortable and calm. He has slept on and off most of the day....I would think that is from the infection...yes he does have another it's a good thing they started him on the other antibiotics the other day. The x-ray from this morning shows and completely different left lung then the one from yesterday morning. It was much clearer and only appears to have a small section which is still collapsed. So being on the vent seems to be helping as the doctors were hoping. At this point, they are talking about keeping Ian intubated for at least another day or two. This is a risk for Ian, as his lungs are weak and the longer her is intubated the harder it will/may be to get him extubated. With this in mind, we are planning on having a meeting with all the necessary players....PICU, Pulmonology and ENT, to discuss our options and for us to learn more about the prospect of a trach. Ian has gotten good at communicating with his eyes to let us and the nurses know what he needs; as well as we have been showing them all of his likes and dislikes....they are getting good and remembering them. Ian is as comfortable as he can be, they do have him lightly sedated to help with any discomfort he may be having from the intubation tube. 

As for the rest of us....we are taking it day by day, we have been keeping Becca her language and terms on any major changes. She does know that he has a tube helping him to breath. When I was talking with her tonight, she asked me if it was in his neck...I told her no but that lead into the trach and that he may have to have one. So we talked a little bit about that, looked up on the internet pictures of people intubated and people with trachs. Then she said she needed to see a picture of Ian, so Daddy took one and sent it our way. She was very happy to see him but said she wants to see him in person not just in pictures....told her I know and gave her a long hug....then like any 9 year old...she wanted to know if she could play on the computer. So as I sit here and update the blog on my precious little boy, my precious little girl is sitting next to me playing a monster high dress up game.

XO to all.

Sunday, January 20, 2013

Thumbs Up.....

Just have to get this one in here.....Thumbs up from Ian and Daddy for the Ravens....

January 20, 2013

Ian's white blood count has doubled, so they have taken more cultures to see if another infection has started. As they are assuming one has based on the white blood count, they have started him on 2 new antibiotics. He finished the other one 2 days we just need to wait and see if anything grows so they can identify what kind of infection he has.

They have not changed any of the vent settings, actually they are the same as when he was on the all of that is good. For the most he is tolerating the vent, keeping him comfortable and quiet is the key....

Look at the view Ian has from his bed....

This is the creation Ian and I have been working on for the past few days...we are very proud of it and wanted to show it off.

Keep up the good work Ravens....bring home the win....

Two weeks....January 20, 2013

The past few nights Ian has decided to play games...he would desate around the 6 to 7 o'clock hour, however he would recover quickly and get his levels back up...last night Ian decided to play his game a little earlier...around 5:15 I got a call from Brian that they needed to intubate again....his levels dropped again and this time he did not recover as quickly as they were hoping as well as it being the 3rd night in a row he did this, the MD's felt that he needed more support then what the bi-pap was providing him. His current settings on the vent are the same as what is one the bi-pap except he is getting more pressure into the lungs. Here s a link to what another mother wrote when explaining respiratory issues with her child who has SMA 1. Please remember that because of Ian's variation of SMA, somethings are similar but not everything and there is no way to really know....

So as of now, Ian is intubated again....we don't know what this means or does not mean for him...Brian and I have some things to think about and more tough decisions to make....we have had some discussions with the MD's regarding this....

One step at a time and we will figure it all out....thank you for all the wonderful support....

Many of you have asked how Becca is far she seems good. We have been keeping her updated at her level and her language. We are taking it one step at a time with her and will figure it out as well....just like we have with everything dealing with our "Normal"....

Friday, January 18, 2013

Friday, January 18, 2013

Last night was good, as was Ian's day. His chest xray from this morning was still a little bit foggy  but you could see the diaphram and heart better then his past ones. He had another xray done at 6:00 tonight ... that one looked good as well. Based on his xray this morning his bi-pap settings were decreased a little bit. He is doing well on the new settings but based on his 6:00 xray, they are not going to change them tonight. 

The MD's have been working with the pain management team to get Ian's feet/leg pain under control.  For the past 5 days he has been on one medicine which has been helping however he can only be on this medicine for 5 we are starting a new medicine tonight.  In addition, they want to start him on an anxiety medicine; however the one they want to start him on interacts with another one of his medicines, so we will need to deal with that as well...just not sure if we can do that now or once he is discharged. We do know that his anxiety plays a role in some of his pain; so eventually getting that under control will be important.

Andy, the MD, who is on tonight as well as has been on the past few nights, just came to do rounds and check on he said, the name of the game is to keep Ian calm and I looked at Andy and said ok, we are not going to see you again tonight. Then I turned to Ian and said, say good night to Andy...then you see this little hand go up waving good good night all; have a good night.

Thursday, January 17, 2013

AND IT'S OUT....January 17, 2013

We have not had rounds yet, so not sure what the plan is for today....but all should be good....extubation was a success.

Wednesday, January 16, 2013

6:00 chest xray, January 16, 2013

The 6:00 chest x-ray looked better then the previous one. You saw more black then white...the white is the fluid or collapsed part of the lung. The MD's said they could extubate tonight or wait until first thing in the morning. Brian and I went back and forth with the MD's on the pros and cons of extubating tonight vs. tomorrow morning. They told us that with everything they had going on tonight and the extubation process it would not be until close to midnight before he would be extubated. There is a possibility Ian's anxiety would rise afterwards which could lead to a bad night for him. In addition, they are doing some form of pulmonary care every 2 hours....suctioning him with the vent is easier for him as well as they can get deeper into the lung. So after going thru all of the pros and cons, we decided to go ahead and start the extubation process around 5:00 am, with full extubation around 8:00 am in the morning.

Today was bingo day at Hopkins....Ian was sleeping so I played for him along with Nana and Pop Pop...Ian did not win but since everyone is a winner....he did get something.....

So everyone have a good night sleep....we are hoping for that here and an easy extubation in the morning.

Night and Today, Third Time is a Charm; January 16 or Day 11

Last night went well, considering....they intubated, did the bronchoscopy and the CT scan. The intubation and bronchoscopy went well. The MD's got a lot of thick gunk out, they said it was so thick it stuck to the tube. It looked like they were able to clean him out pretty well. Then it was off for the CT scan. That went well...results were back in and everything with his heart is normal. As for the high blood pressure, right now it is stable due to all the other medicine he is on. In addition, the CT scan showed that the lower left lung was open, at least more open then what showed on the X-ray. The MD did tell us that the CT scan gives better views then the X-ray however you can't always go to the CT scan, especially since Ian is having at least 1 - 2 a day. After the bronchoscopy and CT scan were done, they did another chest X-ray, which did not show as much improvement as they were hoping. They decided to keep him intubated for a few more hours to do another chest X-ray, well that X-ray was not as good as they were hoping either, however, it did show marked improvement. So, Ian stayed intubated thru the night, getting another X-ray in the morning (that would be today). This X-ray also showed some improvement but still not as good as they were hoping. So bronchoscopy number 3 was this morning. Dr. McGinley (Ian's pulmonogolist), has been the one doing the last 2 bronchoscopes. After this mornings, it was a little bit thinner then yesterday but they also started him on mucinx last night to help thin him out....another X-ray was done, again there was some improvement but still not as much. This one was only an hour after the bronchoscopy and as Dr. McGinley had just finished pissed off his lung (my words), they wanted to give them a little bit more time before deciding on extubation. So that brings us to now....5:30...he is getting another X-ray around 6:00 and will decide then on what to do....

Tuesday, January 15, 2013

Another Bron and CT scan

For a quick update ...they have to do another bron and cat scan of his heart. Ian has been having elevated blood pressures and all the tests on the kidneys have been normal.  He had an echocardiogram this the next step in finding answers to the blood pressure is the CT scan.  Since he has to be sedated and intubated for the CT scan, they are going to do the bron as well as his left lung is still pretty much collapsed.  

Monday, January 14, 2013

Monday, January 14, 2013 - Day 9

Well today was filled with a lot of emotions. To sum it all us, Ian's left lung has collapsed again....this mornings x-ray showed this. During rounds, they informed us they were looking at doing another bronchoscopy , possibly as early as 6:00 tonight. We had a lot of questions. I wanted to talk to Ian's pulmonologist  ...he was off campus today, so another attending and his fellow came up to talk with us. That was good as we had meet with his fellow a few times. We sat down with them, along with my mom and Brian's parents...we went over some options and talked about the pros and cons of them all. It was decided we would make sure his bi-pap mask was secure, work on getting his pain and anxiety under control...we are hoping that once we get that under control maybe he will remain calm and not have to use as much energy fighting things and can use that energy on the getting well. We decided that we would do these things and get another chest x-ray at 4:00. So the 4:00 x-ray showed a little bit of improvement leading all the MD's to agree to hold off on doing another bronchoscopy for 6:00 but we would do another x-ray at 10:00pm. So that is where we currently are...waiting for another x-ray....

Sunday, January 13, 2013

Extubated and more; January 13, 2013

Back up to Friday night after the procedures...they extubated Ian around dinner time, it went much better then they expected. They did have to add a few other medicines to his normal ones in order to help keep him calm during the extubation. In addition, once in the room they were able to place the ND tube...all a good thing. Now they can begin feeding him thru that instead of the TPN thru the PICC line. Thank you to all who were at the hospital and came in on Friday....Friday night, Brian went home to sleep with our friend, for me, I slept at the hospital with Ian.  It was a long night...Ian did not sleep much, he was in a lot of feet and leg pain. This is not any different from what we deal with at home sometimes. In addition, blood work was done and another chest x-ray. His white blood count was elevated again, up to 18,000. They doctors were not overly concerned at this point because steroilds can increase them, so they wanted to wait and see what Saturday night levels were before getting concerned....Saturday nights were down to a little over 16,000. They are going in the right direction leading the doctors to feel that they increase was becuase of the steriods not anything with the pneumonia or another type of infection. As for the chest x-rays, they have been going back and forth...from seeing an improvement, to them remaining the same, to seeing a little bit of a negative change. Based on the x-ray findings they have been changing the bi-pap settings. We are hoping the changes in his x-rays are just because they were moving to fast for Ian and his body was not ready for the changes they were making.

Another one of the big issues they are working with is his pain...for those of you whom are around us on a regular basis, you know that his pain is a constant thing. At home, it usually comes at night, any hour of the night. Sometimes we are able to give him things to help and other times we are not and we are up the whole night. Well since Friday night, it has been much worse then it has been in a very long time....not only is he having it at night but during the day as this morning the pain management team came to see him. They are trying a few different things. Most of the pain medicines they could give him usually have an impact on ones respiratory status; the medicines they are trying do not. We are hoping that this will help because Ian really needs to get some sleep....Brian said last night (Saturday night) was pretty much the same as Friday night, so Ian has not slept much.

Ian's final RSV test came back normal, so no RSV for him...we are waiting for the infection control staff to tell us we can come off precautions, no more yellow gowns, face mask and gloves for us.

So as for today, we are just hanging out, trying to work on the pain. I don't think they are going to make any changes to his bi-pap as this point...even if they did, I think that based on his pain level he would be extremely worked up where they would just need to increase it again. Brian has gone home, I am at the hospital with my parents. They will go home soon and I am hoping Ian and I will have a quite  relaxing evening, night.

Friday, January 11, 2013

And we are out....January 11, 2013

Well Ian is back in his room....starting to recover....everything went okay. They did the bronchoscopy and PICC line in the OR. They were not able to place the ND-tube in the OR so they placed NG tube.  The bronchoscopy results...they did not find as much mucous as they were hoping; they did get a good amount out. His right lung looked good and healthy, however his left lung not so much. It was brittle, delicate and floppy; needs more pressure to open it back up. They were able to place the ND tube when he got back into his room. He is currently intubated and relatively calm. They are planning on trying to extubate him later this afternoon depending on how he is the doctor said....Ian will take the lead and we will follow him.

Again thank you again for all the texts, emails and calls.

Thursday, January 10, 2013

Update, January 10, 2013

Hi Everyone:

Marci asked me to update the blog for her...  A lot has happened over the last 8 hours with regards to Ian's progress.  Ian's left lung is still collapsed and now his right lung is over expanded in an effort to compensate for the left side.   Ian was scheduled today for a procedure to have a PICC line inserted, however the risk of sedation was too great, given that he is going to be sedated tomorrow for the bronchoscopy procedure.  The bronchoscopy procedure will allow the Dr's to have full vision of his lungs, and get in there to get some deep suctioning completed.  So the plan is to do both procedures at the same time, bronchoscopy and PICC line.

As with all procedures this one comes with great risks...   Ian will have to be intubated for the procedure.  There is the risk that once Ian is intubated that they may not be able to extubate him.

Marci and Brian were able to get special permission to have Becca come up and see Ian tonight!

Everyone please keep your thoughts and prayers with Ian, Marci, Brian, and Becca.

Jami Schultz-Margolis

Wednesday, January 9, 2013

January 9, 2013

Well true to form, Ian was up last night until 4am....yup it was my night at the hospital.  He could not get comfortable and was in alot of foot pain.  This all has nothing to do with his pneumonia .... we go thru nights like this at home as well.
In additional, having someone come in the room every 2 hours to do something to you does not make it so easy to sleep. So Ian and I sleep on and off from 4 till 10.

Ian did have 2 more X-rays done today. The 1st one was done early in the morning and did not show any difference from yesterdays. The 2nd one was done mid-afternoon because the RT worked him very hard causing him to have some sat issues so they wanted to make sure nothing changed...this one was a little better then the morning one.  They also decided to do a 10 day course of antibiotics ... his cultures are still pending but based on clinical findings they are making this change. 

So other exciting things about today, Ian got to play bingo...the 1st game he was sleeping so I played for him...we won...he got a remote control car. The 2nd game he was awake for...we did not win. The 3rd game was a boys game, Brian played with him. Well they sort of won...what you say how do you sort of win--Ian had 2 ways he could win and his TV died....yup TV died. Well when you are playing thru your TV that causes an issue. So I called the bingo room and because of the TV situation he won....he picked Cars Monopoly.  I am hoping we get to play tomorrow.  In addition because of the TV situation his room was changed...not having a working TV would be bad for Ian as well as for Brian and I...

Tonight I am sleeping home ....Becca is sound asleep and has been doing well. I was told tonight that she was talking about Ian alot today at school ...when I said something to her...she came and gave me a hug and told me that she misses my baby girl....thank you to all who have offered to help out with her and to those who have helped out with her....we are not coming home any time soon. So if you have offered don't worry I may be taking you up on that offer. :-)

Remember treasure yesterday, dream of tomorrow but live today.

Tuesday, January 8, 2013

6:00 X-Ray, January 8, 2013

Well the x-ray results are in and there has been a change....not for the is not as easy to see the shadow of the his bi-pap settings have been increased back where they were this morning. He will remain on the full face mask...they will do blood work around midnight as well another chest x-ray in the morning to see what he has done over night.

Ian is getting his bath, his bed sheets changed and ready to hit the hay. I already have my bed out and made...and going to shut down in about 10 minutes and hit the hay as well...

Good night all...have a wonderful night. Sleep tight...because we going to sleep tonight.

PICU - January 7-8, 2013

Well true to form, Ian decided not to behave for me last night...his morning (7th) started off the afternoon went on he needed more and more cough assist and suctioning; again it was lots of thick gunk coming out. Brian left for the night and told Ian to behave for Mommy....why should Ian listen to Daddy?

Around 8:00pm, Ian said he was not feeling well and wanted/needed his cough assist. I started it and he kept shaking his head saying that it was not right...I played with the settings, they were the same as what we use at home. So I tried again and again, Ian continued to say that it was not right. We called in the respiratory therapists (RT), she tried it once, same thing, Ian said it was not right. So the RT, Ian and I decided suctioning was needed. Not sure why but I called in Ian's nurse....I needed her in there with me when suctioning was happening....I needed the extra support. So they started suctioning again, and with that Ian decided to really misbehave, he sats went down to the 70' went from being just the 3 of us in the room to another 3-4 RN's coming to join us. Then came the doctors....they were working on stabilizing him, getting his levels back up; did some more suctioning, etc. Decided Ian needed to have another chest x-ray done to compare it to the one from Saturday night in the ER, some more blood work done to see what was going addition to all of this, they decided to transfer him from the pediatric floor to the PICU, he could get more of the individualized care he was going to need...the whole team was wonderful at this point. Oh I also forgot to mention that Ian was asking for I also started working on how to pull off getting Brian back down to Hopkins with Becca at home sleeping. So phone calls were made...thank you Freda-Dale and Mekenzie....thank you Mom and down came Brian, Nana and Pop. As the 3 of them were coming onto the floor there must have been 20 people around Ian's bed and room....and PICU we are back...

So the transfer went well...x-rays taken, blood drawn (a few different times), bi-pap settings increased, cough assist done, more suctioning....I have not idea what time it was at this point. The chest x-ray came back, Ian's left lung had collapsed, it was thought he had an infection (not sure if it was pneumonia or blood infection). My parents left around 2:00am to go home as Ian was stable...around 3:00am Ian decided it was time for me to go home and for Brian to stay. So letting him lead the way, I went about 3 hours of sleep but that is more then Brian and Ian got....after I left, some of Ian's tests came back....his white blood count went from 7,000 to 18, infection was there....antibiotics come take it away. In order for the antibiotics to be started, it was time for the nurses to come in and work on getting IV's into Ian....that is not an easy task...his veins stink...I am not sure how many times they needed to stick him...he now has 2 IV's in his left arm....

Another chest x-ray was taken this is night and day from the one done last night....with all of the chest therapies he is getting, something every 2 hours, the increase in the bi-pap settings and the full face mask instead of just the nasal mask...the left lung has started to re-inflate. The virus swab they re-took last night came back negative for RSV...we still have to wait for the final to come back.

Currently, he is still stable, they have decreased some of his bi-pap settings, another chest x-ray will be taken at 6:00 tonight, blood will be re-taken sometime tonight...and we will see where we go from here....

Thank you to everyone who has checked in, emails, texts, phone calls....please know we are doing our best to get back in touch with everyone but it is just not possible...we will continue to work on updating the blog daily....

Monday, January 7, 2013

Hopkins Day Two - January 7, 2013

What does sleep do for you...well for us....a good night for all of us was much needed and we got it last night. Becca and I at home; and Brian and Ian at Hopkins. We were all asleep by 10:00 and except for Joey needing to go out, I was not for Brian, except for the respiratory therapist coming in at midnight and 4:00 he was did all of us some good.

So Ian had a good night last night, did not need any suctioning with his therapies or wake up for cough assist in between therapies. Brian said Ian started to need the cough assist around 6:00am as well as some suctioning around then. After that, he did well. When I got to the hospital around 12:30, I was seeing a different child then the one I left last night....he was good, color was back, fever was gone, waiting for lunch and wanting to eat. He did well for lunch....salad and mac and cheese. About 30 - 40 minutes after lunch, Ian decided to make the nursing and respiratory therapists work....he seemed to have some gunk stuck and with lots of cough assist and suctioning still could not get it out...we had some desats leading to some blow bye oxygen and an extra chest PT session. After the extra chest PT session....the stuck gunk was out and Ian was breathing now we are back on room air, breathing better and watching movies. We just ordered dinner....chicken tenders and salad, so will see how that goes along with how our night goes...I am hoping Ian gives me a good night like he gave Brian last night...

Thank you to all who have called, texted, checked in....we are very grateful...

Sunday, January 6, 2013

Back At Hopkins January 6, 2013

Well we tried....Ian has been fighting a cold for about 2 weeks and during that time frame we had gotten quite a few calls from school that he was not able to clear himself and needed cough assist. So I left work, went home got his cough assist machine and off to school I went. Well I got 4 (I think) more calls over the 2 weeks about the same thing, except we got smart after the 2nd one and I took the cough assist to school with him. Even with it at school, Ian was still not able to clear himself and needed to come home for some airway clearance at home...Thursday we were doing well after bringing him home to clear on Friday it was off to school. Friday after only being at school for a few hours we got a phone call. We did well for the early afternoon but then late afternoon, early evening...he started to have more airway clearance issues....Brian and I were doing a lot of cough assist and suctioning....we were up with him thru the night....I think we finally were able to get some sleep at 5:00am....Saturday, Ian was a little bit more comfortable, we used his bi-pap during the day to help him stay more comfortable but still needed to do some cough assist and suctioning. Well around 7:30, Brian and I had our neighbor come over...he's a respiratory therapists and we have used him alot.... we decided that even though his oxygen level did not drop to a concerning level, we were better to bring him into the ER and have him checked out. We knew we could not manage another night like Friday we packed up and off Ian, Becca, Brian and I went....Hopkins ER bound. So after a few tests and conversations with the pulmonary MD's it was decided Ian would be admitted to the floor for observation...his chest x-ray did not show pneumonia and at this point his virus swabs are not showing any viruses....all of this is good...however, he did start running a fever this morning (it has broken with medicine)...he has been getting cough assist and suctioning...and getting lots of gunk for now we are staying put at Hopkins....where Ian will continue to get more of what he needs...

I will continue update as often as I can....thank you for all the facebook messages, phone calls and text messages so far...we are doing well....Brian got to go to the Ravens Playoff game....and they won....our wonderful friend Jami came to sit with me after my parents left to go spend time with Becca...and Becca is hanging with my sister and family until I leave to get her and go home for the night....everyone have a great night...

Treasure yesterday, Dream of Tomorrow, But Live for Today.