Thursday, January 31, 2013
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 today...so 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.
Tuesday, January 29, 2013
Everyone have a good night....
Monday, January 28, 2013
Saturday, January 26, 2013
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.
KO signed a Ravens football and gave it to Ian.
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
Thursday, January 24, 2013
|Who does he look like? This was not planned, it was done by the nurse.|
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 van...you 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”.
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 yesterday....it 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 it....watch 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 are....so we will just have to wait and see....
We are looking at 1:00....so 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.
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.
Tuesday, January 22, 2013
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
As for the rest of us....we are taking it day by day, we have been keeping Becca updated....in 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
They have not changed any of the vent settings, actually they are the same as when he was on the bi-pap....so 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....
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 doing....so 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
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 days...so 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 Ian...as he said, the name of the game is to keep Ian calm and relaxed....so 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 night....so good night all; have a good night.
Thursday, January 17, 2013
Wednesday, January 16, 2013
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.
Tuesday, January 15, 2013
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 morning...so 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
Sunday, January 13, 2013
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 well....so 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
Again thank you again for all the texts, emails and calls.
Thursday, January 10, 2013
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.
Wednesday, 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 him....love 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
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.
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's....it 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 on....in 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 Brian...so 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 Dad....so 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 home...got 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 18,000...an 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 morning....it 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
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 better...so 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
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.