Well January 23rd is sure a day that will always be in my thoughts. January 23rd 2005 was the day that I found out that I was pregnant with A.
January 23rd 2006 was the day that A finally came home after 227 days in the NICU. Although it was only a short visit home it was still a day that we never ever thought would ever happen!
January 23rd 2007 was the day that we found out that A was legally blind. We had always known that he would have issues with his vision but never in a million years did we think that we would have to deal with the whole “legally blind” thing.
January 23rd 2008 A was in Toronto Sick Kids undergoing many tests to try and get to the bottom of his blue spells. It was the day that we found out that his lungs were 40% lipids and that I had no choice but to go with the fundoplication.
Thankfully January 2009 has nothing that will always be tied with it!!!! haha Well maybe…the day that we FINALLY got in the New Bug Seat that I have been asking for to trial for almost a year!!!!!!!!!!!!!!!
Oh where to begin!!! Well let me think back to my last post. Things have been pretty good around the S house this month (minus the nights! LOL).
December 8th I went to see my high risk doctor for my pre-pregnancy appointment. I absolutely LOVE this lady (she delivered A) and I felt very comfortable meeting with her and talking. I of course had to take A with me and well you can imagine how much fun that was. This kid does not like to sit still in his wheelchair and let us all know how upset he was about it!
Anyhow, things went well and she agreed that she would take me on for sure once I have a “viable” pregnancy after eight weeks. The plan will be to see her at least every two weeks for cervix ultrasounds to make sure that all is good there. We do not know why I had A early so she said that putting a stitch in the cervix would not be her first choice for me as that can cause issues on its own. IF for any reason my cervix started to thin out or open early then this would be something that we would definitely have to consider.
As well she would like to start progesterone suppositories around week 16. New studies are showing that it can help prevent pre term labor so this could be a great thing. Sounds like we will be getting to see the little baby a lot with all of the ultrasounds that I will have to get!
I told her about my miscarriage that I had a few weeks before seeing her but she was not concerned about it at all. Kind of put my mind at ease because I was a bit panicked about having one. However she said that it is VERY common and they would only become concerned if I was to continue getting pregnant and having miscarriages.
We also discussed the bloodwork/tests that is done in week sixteen for downs, spina bifida etc. I have been very adamant that I do not want these tests done. They are not 100% and there is no way that I would EVER have an amnio done so doing the initial testing is pointless. I don’t think I know ONE preemie mom that would have an amnio done. Besides, if I am meant to have a child with anything they are testing for then that is what will happen.
There was a bit of drama going on here in my Internet world as well this month. I have (should say WAS) a part of a group of moms that talk on a forum. I was in this group for three years, was a very active member and even donated money to support this group. I met MANY wonderful moms there that I felt like I “knew” and talked about some of them to my family and friends. Anyone in a group like this knows the closeness that you can feel.
Anyhow, I went to sign in one morning and it said that I was banned! I was a bit confused thinking to myself “how and why??” so I emailed the lady who developed the board to ask. The only explanation that I received was that “after some investigation, my story of A does not add up and what I say he does is not physiologically possible.” So I emailed her back saying that everything I say A does is VERY really and that obviously she has a lot to learn about medicine if she is saying that this is not possible. I wanted a better explanation. But to no avail. That is all I got.
Needless to say I was very angry, hurt and upset that this was happening. I think more so because of the friendships that I had formed there.
Well a couple of days later I get told to go and look at the forum. Now normally when someone is banned it is kept private. If anyone was to ask about me they would be sent a message PRIVATELY about what happened. Well this lady took it upon herself to post a not so nice message to the entire group about me. Basically it said that after some investigation they had to ban me as what I say is not real. That some moms make their children sick. That sometimes moms find information about others and use it as their own. I literally felt my heart go to my feet and thought that I was going to vomit.
The worst was yet to come. MANY MANY (think over a hundred) people replied to this post saying things like “oh my god I had no idea”, “I hope she gets the mental help she needs”, “I hope and pray A is safe”, “doesn’t surprise me” ….you get the picture. These were women that I have talked to and shared things with. Women who I thought were “friends”. It was so very sad that all of these women were believing ONE person. ONE person who never even followed Ashton’s story. ONE person who runs everything and can get rid of you just like that.
Over time though I have come to realize that I don’t care what they think. I know that I am a great mom, I know that what A deals with is very real. I know that my “real” friends support me. And I also know that ANYONE who believes this “lady” has no idea either.
Next came our visit to Sick Kids. We had a meeting with A’s team because of all of the issues he has been having since the beginning of November. From his being up at night way too many times, to his screaming fits, to his slow motility, to my thoughts of him having reflux again, to his new episodes where he is not breathing. I have to say that this meeting actually went better than any other one that we have had. I think that his main doctor has changed his tune and realizes that I am not going to stop bugging or go away!
Grandma and grandpa C came with us to the appointment. Upon entering the office A went into one of his new spells. However by the time I found the nurse and she came in A was breathing once again.
We discussed many things. I told them that I wanted an upper GI done to check his fundo. We also discussed possibly placing his on cisipride for his motility, but of course it is banned in Canada so there is a process that we have to go through to get this medication. The first step being an ecg of his heart.
The suggestion came up as well to try him on a different formula and see if that was to help at all. Since the appointment I have done so but do not notice any change in his sleep or his motility.
I was also told to up his prevacid to 90mg/day from the 60mg/day that he is on. However I was very adamant that I am not doing this because I don’t believe that I need to have him on such a high dose.
I also told them that I had not yet heard from the sleep lab for another sleep study or from cardiology for an echo. I also asked if they could arrange another 24 EEG seeing that our last one was done in October 2006. These are being arranged.
December also brought my 30th birthday. I have to say that it has been the ONLY birthday that kinda brought me down a little bit. I had a wonderful surprise from my brother and his fiance. Since my birthday was on a Friday it worked out perfectly and they had taken J and I to Toronto to see Dirty Dancing! It was really good and I have always loved that movie. What girl doesn’t? I have to tell you though that the guy that played Swayze was FAR from good looking which was kind of a bummer when he is the MAIN interest of the movie! hahaha
Grandma and grandpa S came down on the Saturday (13th). We had a really great visit and we went out for dinner for our birthdays. Daddy was unsure about going out for dinner because A usually does not like to sit still but he was SO well behaved!!! And as a bonus we got to keep the dinner that grandma had brought down for the next night! haha
Daddy also turned 31 in December. A and I had baked him a cake and we celebrated his turning another year older with just the three of us.
December 23rd grandma and grandpa C were here early in the morning to pick A and I up to head to Sick Kids for Ashton’s ECG and upper GI. We left here about 6:30am for the 9am appointment and ended up getting there about an hour early. Worked out well though as we were able to have a coffee and sit a bit. It is always nice to get there and not feel so rushed. A had some bloodwork done first and did really well. I can never get over how well the people that work in the clinic there do with the kids.
9am we were upstairs for his ECG. He was a little worked up at first but I think that is normal seeing that normally he is being poked and prodded and probably is worrying about that. After the ECG we headed to radiology to have his upper GI. Upon entering the room A started to get very upset. This is the same room that he had ph probes placed and I know that he remembers that. As soon as I laid him on the table he was so upset crying and going off colour. The doctor placed 60mls of fluid into his g tube and we waited. We could see his tummy full and I was just waiting for the reflux to show. We would go from his back to his side for about five minutes and nothing. The doctor then said that he was going to put in another 60mls. I was a bit hesitant as I only feed A 50mls every twenty minutes during the day for his feeds but he said he wanted to push him a little. So he did so. STILL NO REFLUX!!!! We waited about ten minutes and NOTHING. A was still very upset but mommy was SO happy! I was just about jumping up and down and the doctor said “these tests are only a moment in time and you have to remember that.” Yes, I know but trust me, I know my kid. He was so worked up, gagging, crying and laying down and NO reflux. If he was going to reflux it would have been THEN. See, it pays off to do research and demand a certain surgeon do the fundoplication, because he obviously did it PERFECT!!!!
A however was not emptying AT ALL while we were in the test so the doctor asked up to come back in an hour to have a picture down to see how things were moving. I’ll tell you, I was a bit nervous with it being the 23rd thinking that possibly he would be admitted for obstruction!
We all went to eat lunch and walk around while waiting for the hour to pass. Upon having the x-ray done all was good and we could head home.
Christmas Eve A was in bed at 11pm and daddy and I shortly followed. Daddy is still a big kid at Christmas time and was up about five times throughout the night until 7am when he finally got out of bed! haha I was up soon after and A was up at 8am.
It was pretty cool this Christmas because A was SO into the presents and had lots of fun. Last year I taped the entire morning here and he kinda just sat there. Well this year all he did was talk and talk and talk!!!! He would get so excited for a present no matter who was opening it. Really neat to see. Maybe next year he will understand the whole Santa thing? I can’t wait! He does know what “Christmas Tree” is and even if I say it now he smiles like crazy. Such an amazing little man! Cujo and his new bone Santa brought for him…
We headed over to grandma and grandpa C’s at about 11am. Uncle S, Aunty A and Aunt Shorty were also there. We all got spoiled and had a great time. Aunty A made me this amazing gift this year and I wish I had a picture of it to show you but I don’t. It is the word “Miracle” cut out in wood letters and she put pictures and decorated them. It of course made me cry and I can’t wait to get it up!!!
Boxing day we headed down to Chatham to visit with grandma and grandpa S and Aunt K. Great grandma and grandpa came over to visit as well when we got there. A decided to nap later in the day so poor daddy had to wait to do gifts! haha
Once again we were all spoiled!!! A got the new Elmo which is pretty neat because when I would take him in stores that had it I would always play it. In the store it only says one line so now he KNOWS when that line is coming and starts smiling like crazy.
A in his cool new pajamas from grandma and grandpa S…
Saturday night grandma took over for A so daddy and I could go out to the bar and have a night out. It was lots of fun and A had a pretty good night for grandma which is always great!
We came home Monday evening and I took down our Christmas tree within the hour of being home. I know that old wives tales say it is bad luck to take the tree down before the New Year, however last year I left it up and we didn’t have the greatest of years so I thought I would try this! haha
New Years Eve we didn’t do anything. A was in bed at 11pm and daddy and I watched the New Years special. The minute after the ball dropped I was in bed! I have been SO tired lately and just have no energy at times to do anything.
Here is to 2009 and hopefully a GREAT year!!!!!
Well our follow up was yesterday with complex care. I have to say that I didn’t find it very helpful but I kind of expected that. Bascially I told him how frustrated I have been with how A is doing. I took my notes and showed him how much he has been vomiting. He seemed a bit concerned about that so we are doing continuous feeds throughout the night and three small feeds during the day to see if that helps. If not then we will do an upper GI to see if he is refluxing past his fundo (which I think it not functioning) and then switch out to a gj tube again.
Last night was our first night of continuous and we had a nurse here which was nice. He did okay until about 6am and she said he was gagging and definitely refluxing. That continuous ended at 8am and then at 11am he got his first of three small feeds for the day. He gagged through the whole thing turning off colour constantly. After the feed was done he threw up three times.
Sunday night when I put him to bed he went down to 14 and I was ready to freak right out. I can’t even tell you how stressful this has been since he has come home. I feel like I have aged at least ten years. Anyhow, I was so fed up with his shitty sats at night sleeping (88) that I put oxygen on him. Guess what? He satted 98 ALL night and slept great. So Monday night I did the same and it worked. Right now he is napping on the couch satting 82. So I have the oxygen in front of his face and he is 96.
I told the doctor about this as well and he seemed okay with it. Of course I don’t think it is my job to find out what works best for A. Especially when you are talking feeds and needing oxygen. He is only getting .5L so the doctor is okay with it. If he sats 100 I just turn him down as I don’t want him sitting at 100 because of his hypoxic drive.
After that appointment we went and he had some bloodwork done after his feed for genetics along with a urine sample. He did very well and I can never get over how awesome these people are there that take blood!!!!
I also just found out that the approval for his DNA to go to the States just went through so we have at least a three month wait for that.
Tonight is exciting for all of us. In January I was contacted by a gentleman who wanted to grant A a wish. Because of being in hospital we were not able to do anything. He is finally coming tonight to meet A to see what he wants to wish for! He also told me that he has a large sum of money for J and I to catch up on things since spending so much time in hospital. How awesome is this!? I still have NO idea what to wish for….maybe he will have some great ideas!
Well we have had an interesting few days around here. Wednesday night the night nurse was a new one which I absolutely cannot stand when there are a bunch on that DO know him. This nurse had come to help out for the night because of short staff, and she usually works in the critical care and NICU. I thought okay, well she has more experience than others….what could go wrong? Well for starters she was not friendly at all and didn’t do any vital signs until after 11pm. J and I had left for about fifteen minutes at about 10:30pm and we came back into the room with A in the crib and three nurses standing around him. They had the oxygen blasting in his face and the suction going. I looked up at the monitor and he was in the 20s and I immediately told them to get rid of the oxygen. The nurse looks at me and tells me that they need it because he is satting so low. I then tell her that he can’t have oxygen and that it makes him worse. She was not told this on handover. Ugh! Then the most shocking news. She said he had thrown up! WHAT?! Sure enough his shirt was covered in vomit and he was NOT happy. It took me a good ten minutes to settle him down. I asked what he was doing and she said nothing…he was just sitting in his chair watching TV. Well the parents next to me told me that she was bouncing him pretty rough in his chair and then he gagged and threw up. I was livid. I went right out to the nurses station, waited for the charge nurse and spoke with her. She was ready to cry because she was so stressed out from her shift already. Anyways she said she couldn’t change the jobs because this nurse helping out specifically requested to have babies or she wasn’t coming to work. A isn’t a baby I said…he is almost three. Closest thing I was told. So I settled down and she agreed to put A on her pager for the night.
I then asked our nurse to page the on call doctor as I was freaking out that A had thrown up. He came to talk to me but it was really a waste of time. That is what sucks about things happening on the weekend around here!
Friday we had a little meeting with our complex care doctor and the social worker. We have finally come to the decision that A will be going home. I am not thrilled to be leaving here without answers, but I need to get over it I guess. This is VERY hard for me to accept. They are calling my case manager and getting her to come in for a meeting. They want me to have more nursing than just two nights a week. I told them how home care nursing just isn’t the same so they will be getting nurses in here to train that I will have at home. I will also be having a monitor for him as well. Genetics will follow up with us on an out patient basis. I am not quite sure when we will be going home but probably within the next couple of weeks. We were also told that the chest team wants a chest x-ray and an echo done on A every six months after we leave. I will be talking to chest on Monday about everything because they really thought that his feeds were related to his desats but we found out with the probe that there is no correlation at all. Should be interesting to see what they have to say about that. Maybe they will finally do a CT scan. Who knows.
Friday night. A’s feed finished at 11pm and two minutes later he looked funny. His sats dropped to the 70s and then he threw up. No gagging, no retching, just threw up. Probably about 30mls as well. I was so upset! I just don’t know how this is happening with a fundo that is tighter than usual!!!! The doctor on call came last night but he really couldn’t help me out much. He did say he totally understands why I am concerned and the regular team needs to know about this for sure on Monday. It was at this time that I found out that he had thrown up as well on Thursday night after I went to bed. I was never told in the morning when I asked how his night was.
Yesterday I also started A with some sweet potatoes mixed with his 6pm feed and some rice cereal mixed with all feeds. He is doing great so far and I can’t wait to get him to all blended food. I just wrote out a new chart today for his feeds. It took a while as you have to count all calories and water consumption.
Today A went down for a nap at 2pm and at 2:30pm woke up with gas and then went into one of his big spells that he has not had in a couple of days. The nurse on today was kinda freaked out because she hasn’t been with him in a while. He went as low as 8 and it lasted for about 25minutes for the whole episode. We both also noticed some strange staring spell during the episode. Ugh talk about a downer for the day!
I have been thinking today again about the botox in the saliva glands and think that I may end up doing that before we leave. I do notice a lot of secretions during these episodes as well as when he gags. We stopped the glyco the other day as I didn’t notice it helping so maybe I should just TRY the next step. I will be talking to the docs on Monday about it again.
Well I waited all day to finally see the doctor this afternoon. She really didn’t have much to say to me but did of course ask when I would like to go home. Hmmmm ….I said I would love to go today but I don’t have any answers yet. So then she asked if it would make me more comfortable if I took a CPR course. Ya, no thanks. The last thing that I was thinking in November when I had to call 911 was how to do CPR. It is one thing to learn about it and use it possibly on someone else, but when it is your own child it isn’t as easy as saying so.
I had another breakdown today when the chest doctor came to talk to me. I find it so hard to stay strong anymore when I am talking about A. It just isn’t fair that he has to suffer because the docs don’t want to be the ones that are wrong. If they had of listened to me the day that we got here I think we could be home by now. But it took ten weeks (today actually) to finally get that to happen. I told her how I felt that if A was a typical child everything would be done. How no one listens to me. How I know this child SO well it is scary but yet I am treated like I don’t know a thing. It sucks.
The bloodwork was done today for the genetics testing but I have no idea how long it will take to hear anything back. Hopefully I might see one of the docs about that tomorrow. Poor little guy knew as soon as the lady for taking blood came over to his bedside. His sats were down in the 40s before she even got the band around his arm.
The complex doctor was not thrilled to hear that genetics has a new way of thinking about A. Well of course she isn’t…once again she isn’t the big savior in all of this. She asked me what I thought of him and I said he was wonderful. He thinks what I think. He acknowledges my concerns and the rough road I have had as A’s mother. He cares about A. And yes, I got this from the man in a matter of ten minutes. I did tell her that the biggest thing I heard was that A doesn’t have cerebral palsy. She said that he didn’t write that down in his note but rather it said that there is no primary diagnosis. Hmmmm same meaning to me.
I had a nap today and when I woke up it was 6pm. I asked the nurse if the doctor had come back yet with the probe results. She said that she was in and put the paperwork in his chart but that she needed someone to interpret them for her from GI so it would be tomorrow. So I asked the nurse to see them. And voila mom was able to interpret the results. Kinda scary don’t you think? A mother can read the results but a complex care doctor can’t?
So what do you think it showed? Do you think the mother who wanted to put her child through the unnecessary testing for reflux knew best or the doctors? Well if you guessed mom you are right! Now I can say that I was actually surprised that it was not MORE than it showed, but all in all he is still refluxing. He had 53 episodes of reflux in the 24hours with the longest being 7 minutes. Much better than before the fundo, but I knew it didn’t fix it. So I was thinking that maybe when she comes in the morning to tell me that she needs someone to interpret the testing I could do it for her?
Well nothing new is really happening here. I went home on Thursday night and didn’t come back until Sunday morning! I wasn’t planning on staying that long but the nurses that I had on were wonderful and knew that I needed the break. It will be eight weeks tomorrow that we have been here! And really we aren’t much further ahead than when we started. The only real change has been the fundo and g tube placement. I have to tell you again how impressed I am with how well he is doing with this! I was so anti fundo and it has truly been awesome!
I was able to book the photographer and the DJ while I was home (whole reason I went home) so I don’t have to worry anymore about that. I can’t wait until the day that I get married!!! J and I have been through SO SO SO much together and we have been able to overcome all the bumps in the road. And to top it off we have the most AMAZING son in the world who has changed our lives in ways that we never could have imagined!! Good and bad LOL
So I am waiting to see IGT to discuss more about the botox. And there is one guy in particular that I know in IGT and he is NOT going to be anywhere near A for the botox. He had issues putting a gj tube in and *I* had to tell him that it wasn’t right. So there is NO way that he is injecting botox into saliva glands!!!
I also spoke yesterday for quite a while to A’s nurse practitioner. I told her once again that I would really really like to see genetics. I remember this coming up a LONG time ago when we were in the NICU but it never came to anything. And I have been bugging since we have been here. So finally she agreed to it because there IS the possibility Ashton could have some sort of genetic mutation which means that if I was to have another child they could have the same issues. And I told her that I know a few moms that didn’t get things looked into until they had their second child who started to present with the same issues as the first. I also said that I would be pretty upset if this were the case when I had asked to see genetics many many times. I want to be able to make an informed decision. Now I truly hope that this isn’t the case but maybe genetics might help us lead in a way that could be helpful.
Please say a special prayer for our little friend Ryan…he is on life support and not doing well. He was born at 28 weeks and was just diagnosed in September with mito.
Well I got the results of the sleep study today. It sure doesn’t make anything more clear or easy! So basically it shows that A has high CO2 levels like I said before. However after I left I guess his CO2 stabled out at about 56. Still a bit higher than usual but much better than 80. They tried a few more times to shut off his .5L of oxygen but then he would desat so they would have to turn it back on. They then tried him at higher amounts like 1L and 2L. This would then increase his CO2 even higher. What does this mean? Well it means that oxygen is not a good thing for A. However at .5L it is okay…just no more than that. Oxygen at higher levels than this becomes toxic to him basically. This also explains why he doesn’t do well with sedation of any sort.
This also tells them that A is requiring a higher CO2 level than normal to have the drive to breathe. They think that over time his baseline of say 45 for CO2 has risen. So all in all he needs the hypoxia to make him breathe. Confusing? Yes! But as we all know, A has NEVER been easy!!!
As well as this, the sleep study showed significant obstruction. Where exactly? Well we are not sure. They are thinking that he is pooling his secretions in his airway and some of this is going into his lungs…micro aspirations. On the video, you can see him moving around and then it is like once they are clear he goes back to sleep. What can be done for this? Nothing really. There is no way to really stop the aspiration of his saliva. Over time can this cause harm? Yes, but it is hard to say how long or when things would get worse.
They also believe there is some floppiness to his airway when he is in deep sleep. Not surprising to them considering he is an ex preemie who has cerebral palsy.
So all in all it gives at least some idea to what is happening, but frustrating because there is nothing we can do for either as a fix. I did ask why the pooling seems to have gotten worse since the fundo. That is if they think the desats during the day are related to this. They don’t have the answer, so I am hoping that maybe his surgeon can provide some input on this when we meet up next week.
I saw ENT again today and he is very concerned about Ashton hitting single digit numbers for his oxygen. He did bring up the trach again but I refuse to talk about this until we have the team meeting.
So that is about it for now….