Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
Well, as I sit here and write this post so much goes through my head. We headed to the hospital yesterday to see A’s respirologist. As I have said in previous posts, I truly wish we had met this man sooner. He is amazing in every single way and really knows his stuff. And he is the ONLY doctor that has taken what A does VERY VERY seriously and is very confused as to why his issues have not already been dealt with.
So, as it sits right now we are waiting for “the call”. A is going to be admitted to the PICU for a period of time and will not be able to come home until he has some sort of ventilation.
His issues at night have continued and this use of oxygen has been very concerning to me as this is not something that he *needed* in the past. Yes, he has always had issues with desats, but not like it has been lately. I have been saying that I feel like he is going downhill and that is the same thing that his resp. doctor thinks. He told me that kids with issues that A has get worse, not better.
So the plan is going to be to try to get A used to wearing Bi-PAP at night while he sleeps. “Bi-level Positive Airway Pressure; Used to treat sleep apnea, and other sleep related breathing disorders; Delivers alternating levels of inspiratory pressure (IPAP), or higher pressure, to keep the airway open as a patient breathes in, and the expiratory pressure (EPAP) is lower to reduce the work of exhaling; the BiPAP can be set to drop the level at specific intervals, or upon demand.”
Children usually take some time to get used to this, so depending on how well A does with it will depend on the length of our stay. The good thing is that he has not had his soother since he was ill in October. This would definitely be an issue as the Bi-PAP mask goes around his nose and over his head. And with him only taking his soother upside down and sleeping on his belly, it would have been next to impossible.
The other added bonus is that he really really wants to sleep on his back now, however I have not been able to allow him as his saturations are always lower and he just doesn’t breathe well. Bi-PAP will be MUCH easier if he is sleeping on his back.
*IF* the Bi-PAP does not work then we will have to talk deeper about a tracheostomy. When he mentioned it to me yesterday I said that I didn’t know if I could do a trach to A. His exact words were “well here is the question to answer it for you. Do you want your son to live or die?” I started to cry. Of course I want A to live, but a trach is a HUGE deal. It is a major surgery. It would change his life completely and ours. It is not something I take lightly.
Now with all that has been going on, he is very concerned about A having issues with his heart because of how much harder it has to work for him with all of his breathing issues. So they will doing another echo to check on things. One of the big issues that can happen with severe sleep apnea and the apnea that A has daily is right heart failure.
Another thing that was talked about was these big “spells” that A has. He thinks that they *could* be sudden pulmonary hypertension spells where the vessels all clamp down which cause him to go very blue and not breathe. I sit here wondering why on earth no other doctor has even suggested this could be the problem????
So it looks like we are in for another hospital stay. I feel more comfort in the fact that this is being done in the ICU but I am still very scared of what the future holds yet again.
The other issue that we have to deal with is A’s night feeds. His respirologist wants him off night feeds, no ifs ands or buts. This is proving to be VERY difficult and for now I just can’t make it happen. I didn’t do a feed last night but today just did not work out to give him more feed. He was refluxing like crazy with his second feed and that was only at noon. I will be lowering the night feed by 10mls/hour but that is the best I can do for now.
A’s x-ray from our last appointment did show that he does have interstitial lung disease. I specifically asked A’s chest team at Sick Kids *if* he could have this and they said no. Yet again, another question in my mind.
This is day two of no beds being available. I just pray that we get one soon because I am so afraid that my little man is going to be spending Christmas in the PICU.
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 I cannot wait to go to our follow up appointment early next week. Since my last update I have been ready to pull my hair out. Tuesday went pretty good for him but he did have a big episode at 2pm just before his nap. And then from 6-10pm he was not happy. Wednesday he was up by 9am after a very restless night but he was happy. He had another big episode at 2:30pm during his crappy nap. He got very congested to the point I had to suction. At 7:30pm he vomited which is a half hour after his feed ended. At 8:30pm he had a pretty big blue spell where you knew he was refluxing and couldn’t catch his breath. At 11:30pm the nurse put him to bed and he had another vomit with a desat to 38. Thursday…he was fussy for pretty much his whole feed from 6-7am. At 3:30 he had an episode with huge burps. When I opened his tube to vent him 20mls came out immediately. 6pm his feed started and by the time it was over at 7pm he had vomited three times. Friday…up at 10am after another restless night and pretty grumpy. Back to sleep by 12pm. After his 2pm feed there was tons of gagging episodes and crying. 5-6pm gagging almost constant. This was BEFORE a feed. Feed on at 6pm and within ten minutes he had the hiccups and more gagging. 7:40pm he vomited FOUR times and LARGE amounts. My guess is that it was pretty much the whole feed of 180mls. Feed on at 10:30pm-11:15pm and then vomit at midnight. Last night…another crappy night. Up at 9:30pm. 10am-11am feed CONSTANTLY going off colour, crying and fussing. 6pm feed TONS of refluxing/swallowing/gagging. It is now 11:30pm and nothing since his feed ended at 11pm. Knock on wood.
To top this all off at night and at nap times he is satting at 88. He was not even doing this in hospital. His baseline is typically 94-96. The odd time he comes up and sits at 91 but not often. It is driving me bonkers and I have a hard time sleeping knowing he is sitting at 88. There are times that he sits in the 70s too for at least ten minutes. Now I know they say not to focus on numbers but when this is not normal it is hard not to.
This past week has made me realize that I probably just wasted 88 days at the hospital for absolutely no reason. I still cannot get over the guilt I feel for seeming to make A worse. It sucks.
So that is why I am ready to pull my hair out. These friggin doctors need to listen to me when I tell them that he is STILL refluxing. He is miserable and very hard to keep happy. It is at the point where I am scared to feed him. Scared of him gagging/choking. And pissed off that he has to suffer through all this crap when he doesn’t need to. IF and only IF they would listen!!!!!! If you wonder how I remember all of the above it is because I have been keeping detailed notes to shove in their faces next week.
Good news…we have a new member of the family. We picked her up on Thursday night. She is a 7 week old 4lb jack russell crossed with a pug. They are called jugs. We decided on her name tonight which is Mady. She LOVES A and can’t get enough of him. A, well I am not too sure what he thinks. Probably tired of the kisses LOL.
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?
What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?
Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.
At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.
Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.
We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!
He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!
He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.
I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.
I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.
On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.
Mothers know best…..that’s all I know. When are MOST docs going to learn this?
Well we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL
Oh where to begin. I am so frustrated. The complex care docs were in this morning and from the way they are speaking they are wanting to get A home. Now this is a great thing but I want answers before this happens. He is being weaned more from his morphine today and will be off it totally by Thursday or Friday. They also ordered that is not on a monitor during the day but only during sleep. I think much of this has to do with the fact that the docs do not want me watching the numbers. I have issues with how low his oxygen has been going for the past few days.
On a good note he has not had any of those crying fits today, last one was last night at 7pm. There goes my theory of it being hunger as his feed just ended at 7pm.
Blue spells still continue. The doctor says that he believes it is breath holding. The nurses on the floor do not understand as they are the SAME as before but worse. I am beyond confused as to why they are not concerned about them now.
Oxygen was discontinued at noon today and when he went down for a nap at 1pm he was satting between 78-84. With blow by he is 99. Why does he suddenly require oxygen while sleeping?! When we came in hospital he was not on it and his average sat while sleeping was 95.
To top everything off I am starting to get sick I think. I have a sore throat and feel sick to my stomach. I am just not in the mood.
Still waiting to see the chest team now as we have dealt with the reflux. (They wouldn’t do the sleep study or see him in the beginning until his reflux was dealt with.) Hopefully they have more convincing info for me then telling me that A is holding his breath.
Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.
Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.
The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.
As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.
I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!
Well things are still good around here. A woke up this morning with a fever and snotty nose with tons of desats. With one dose of Tylenol he was already better but the doctor wanted blood work and to send him for a chest x-ray just to be safe. All looked well. We can cancel the swab for RSV in the morning hopefully because that is just not a nice procedure! With his blood work today he went down to 43 which gave them a run for a bit. It confuses me so much how he can go SO low with crying. I really don’t think that is related to reflux which just adds another piece to his puzzle.
I received some numbers as well from his ph probe that he had last week and it really is interesting to see what they said. It showed that he had 178 episodes of reflux over the 24 hours with the longest episode lasting 23minutes! Overall the percent was 8.4.
Went out tonight for dinner with J’s mom who has been here since Monday. It was nice to get away from here for a bit knowing that he was okay.
So today is the two year anniversary of bringing him home from the NICU! I cannot believe how fast this two years has gone. I remember walking out of there like it was yesterday.
Well I am happy to report that all is well! A went into the OR at 1:15pm and we were taken into recovery at about 3pm to see him. He wasn’t do so well then but at 5pm he came back up to his floor and is doing VERY well. I am soooo proud of him! He is on .5 of oxygen satting 95+.
So the news from the bronch. No abnormalities of the airway. No floppiness. So no real answers. There was some redness/irritation in his airway which they believe would be from reflux. The sample from the wash of his lungs is being sent out and we will have results from that in a few days.
Adenoids are still in. He didn’t think that it was necessary to remove them.
All in all I don’t know how I feel. I guess it is just hard like this because we still have no real idea of what is going on. But it is wonderful that there is nothing going on with his airway.
Thanks for all the thoughts and prayers. Now we need more as we embark on the next part of our journey…
So the team meeting is done with. I have to say that I think that I did very well considering the range of emotion that I was feeling. It is always so hard to go into these types of meetings strong and confidant and then feeling like you are going to start bawling as soon as you start to talk. It was a little intimidating having so many different types of doctors in there all listening to what I had to say and asking questions.
So here is the plan. Every single doctor involved agrees that we need to treat the reflux. The first step is having a scope done of his airway and lungs. They are also going to do a wash of his lungs and send off a sample to see if this might help them at all. The scope is going to be done in the OR under a general. I am happy because A has had too many scopes for my liking awake and it is not nice at all. However the ENT is not comfortable doing it while awake anyhow because of the spells that A has. The general worries me a bit though because he always does so poorly when any type of sedation is used. This all being said, his ENT said that he would like to see A in the ICU afterwards as an extra precaution.
It also came up that he would like to remove A’s adenoids. This scares me even more because it is a surgery and added to what is already going to be happening I don’t know what to think. However his ENT and I agreed that if he felt once getting in there and seeing for sure the size of them that it wouldn’t really make a difference then he would leave them. If he felt that they could be contributing to his issues then he will remove them. Hard to stay positive when the ENT is the one saying how he is worried how A will do.
After the scope comes one of my biggest fears. Fundo. I am starting to feel more comfortable with it however knowing that I have tried everything else and knowing that it really isn’t an option anymore. It is life or death.
After recovering from the fundo will come the sleep study. NOW, we are hoping that the fundo will help MANY of his desat spells. We are hoping that his BIG spells are caused by reflux. Of course none of this we know for sure. Which makes it hard but again, nothing left to do. I was not able to speak with GI as she was called to surgery but I was shown the ph probe results that he had and it did not look good at all. I am still waiting on numbers of how many times and so forth. It is just so hard to believe how much he is refluxing but yet he is the happiest kid in the world. The docs agreed that it does make it harder for them as well because they aren’t seeing a “sick” acting child. Instead he smiles and coos at them!
Now the scary part. Every doctor agrees that they do not think that the reflux is his only issue. So the sleep study will show what is going on at night (if it isn’t just reflux). I asked about this because he does drop a lot during the night but he is worse during the day. During the night he drops to the 40s, 50s and 60s but it is odd because I can tell by his breathing that he is going to do it. During the day he changes colour MANY times and we think it is different then what happens at night. Central apnea versus obstructive apnea.
Of course this is when the trach came up again with the vent. But we are going to wait to go down that road. I need everyone to please pray that A will not have to be trached!!! I get very emotional just thinking of it and it just plain sucks.
The main doctor that I have been dealing with this week came in after to see how we were. Sad. Scared. Numb. She is in her last year of residency and I have been very pleased with her. She told us tonight that she knows how hard it is for us to make such crappy decisions, but that A was not going home until they figured him out. WOW. Finally. Last week the doctor wanted to send us home because he was stable. She said her team thinks he is far from stable and they are afraid that if we brought A home now that he would die. Blunt. To the point. But REAL.
So all in all it looks like we are in for a long stay. It has already been a week and man oh man does it ever suck! I came home tonight to get a good sleep and put up some pictures of my little man as I am sure that everyone misses seeing his face! The nurse that is on tonight is absolutely wonderful! I asked her if she used to be a NICU nurse because she just has that about her and she said no she just likes kids. I told her that I have met many a nurses that work with kids but don’t seem like she does. Well long story short, her younger brother has severe cerebral palsy. It is very obvious that she has dealt with a lot as she is compassionate, loving, supportive and caring.
I have to say that although I was frustrated in the beginning with this hospital and these docs, they have really stepped it up. I just hope that whatever lies ahead and whatever decisions are made that I will feel good. I hope that everything works out well and A stays strong and keeps fighting.
Now for some pictures!!!
I also want to say thank you to Shannon (Olivia & Avery’s mom) for coming to visit last night. It was SO nice to have you come down!!! You are an absolutely awesome person and I am lucky to have met you. By the way, the lasagna was GREAT!
Today we had our follow up with A’s paediatrician. Oxygen is now off but we will be able to keep it here at the house for a year now which will be nice in case he gets sick and needs it. We talked a bit more about A’s spell being seizures and he seemed okay with me not agreeing that this is what is happening. But like he said, it has to be neurological, cardiac (which we don’t believe it is), airway related or reflux. Now we do know that A does have neurological issues and reflux. I have myself ALWAYS believed that he has some airway issues happening but it has never been investigated to my standard.
His ped was doing a referral for A as well to London Children’s Hospital for a gj button! I hope that things get going with this too because I would love to see how A would handle small g tube feeds. Even if I have to do j feeds during the night to get most of his calories into him it would be awesome to get to the point where we could do some bolus g tube feeds.
Sick Kids called AGAIN today. Yes, it is crazy how for some reason everything is coming together but lets all keep our fingers crossed that we continue this way! They were just calling to let me know that the referral for ENT was done and specifically for Dr. Papsin which is exactly who I want!
The other team at Sick Kids called yesterday to let me know that the feeding study was being arranged as well as the sleep study. I can hardly believe it!
I put up our Christmas tree on Tuesday night so here are some pictures from then until tonight!
First some pictures of yesterday when A was playing with Dawn…
So today was the big day where A FINALLY got to see a lung specialist! I still cannot believe that he has never had to see one considering that he came home on oxygen and has had so much trouble with his breathing and blue spells.
Waiting for the doctor sitting in a gold seat from Maple Leaf Gardens!
Anyhow the doctor was very great. He had read over A’s file so he knew some of his history to speak with me. One of his biggest concerns is the ALTES that A has had in the past. Again, FINALLY someone that cares about my little man not breathing besides me!
After listening to A and speaking to me for a good while, asking questions and talking things over he has decided on a few things. He does not believe that A has allergies or asthma. This is a very good thing. He also believes that a lot of A’s issues stem from his upper airway and the fact that it doesn’t have muscle to help control swallowing and maintaining an open airway. This would explain his blue spells that he has and the big events as well. When you add reflux to the issue it can make things worse which is obviously what is happening.
When talking about A’s sleeping it is obvious that he may have some issues with sleep apnea. He is going to be ordering a sleep study so that we can see what exactly is going on and whether or not it is obstructive. He warned me that A is at risk for this either now or later because of his past history so it wouldn’t surprise me if that is what is happening now. I am actually kind of excited about the sleep study because I am sure that it can show US what is happening at night.
Second A will be having a feeding study. He wants to know if A is aspirating into his lungs which can cause a ton more lung problems for him. I was supposed to have a feeding study done at Sick Kids before this appointment but they decided to call me last week and tell me that I could go to Mac for that and they were not going to do one. He told me that he will put in the request again.
Third, A will be having a bronchoscopy. The last time that he had one of these was in February of 2006 while in PICU. However this being said it was done by an ENT that has totally messed up with A’s files. I found out today that the report he did after the surgery in December of 2005 while in NICU that he in fact says he never did a laser surgery. WHAT?! I remember EVERYTHING about that day and the week after. It was December 16th 2005 and he came out on a vent. His airway and tongue were SO swollen that he ended up on the vent much longer than anticipated. Anyways I am just blown away that a surgeon doesn’t know what he did or if he did it. Obviously the ENT that we will be seeing is NOT this guy and hopefully the one that did A’s cochlear implant surgery! It would be great to have him as well because he saw what A does while in surgery and in recovery. He told me on June 11th of this year right after surgery that he was worried and he would get to the bottom of it. NOTHING was done. Ashton even had one of his ALTES in the hospital yet nothing was done. Oh sorry, they suctioned him.
Now to the scary part. I will be speaking to a surgeon after all tests are completed about a possible tracheostomy. Hmmm I’ll tell you I could feel the tears well up in my eyes. I can’t imagine WHY my little man has to go through one thing after the other. A trach was actually brought up in the PICU back in February of 2006 but because the spells stopped after the gj they decided against it. I had blocked it from my mind and never looked back.
Well gj tube is still in 20 months later and yet A has still had ALTES. Yes they are WAY less frequent but the happenings are scary enough. It is like the doctor said, we are very lucky that A has recovered on his own each and every time that he has had one, but what if he didn’t?
I think he liked this doctor too!
After that appointment we did some of the usual shopping at the hospital and grabbed something to eat. At 1pm we met with his audiologist for some fine tuning on his implant. He did wonderful in the sound booth turning to sounds at even 20db!!! Everyday I am more amazed with this implant and what it has done for him!
Back at home wearing his new shirt that grandma bought him. My little future NHL star!
One day at a time….
Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.
Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…
There are the smiles!
Sophia giving kisses…
Alina woke up for some playtime however A wanted to sleep…
Haha way too cute…
Sophia opening her present…
Alina and her thumb!
Alina opening her present…
After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.
Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!
The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.
She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.
She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.
Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.
Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.
The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?
I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.
A waiting for the doctor at McMaster…go figure, now he’s happy!
Laughing away at something…
A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.
A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂
Well I thought I would do a post before J and I head out for the night!! Yes, the night! Grandma and grandpa are taking him and the dogs until we are back tomorrow!
So we have already gotten good use out of A’s bike trailer. We have had him out almost every night for a ride and he seems very content in it as long as it is moving. It is really nice to be able to do things as a family that we probably never thought that we would be able to do at one point.
Friday Dawn was here (A’s PSW) and she brought him some new toys that she had found while she was out and thought that he would like! She found this little cat that makes the “meow” sound and he LOVES it! Very nice of her to do for him.
So A has started with his vomiting again. Very frustrating for me to understand because nothing has changed since he had this new tube put in. Mind you, it isn’t at the amounts that is was a month ago but enough that it is affecting him. I really wish that there was something that I could do to fix it for him.
Speaking of reflux, that has been a “hot” topic in a group that I am part of. A lady had asked a question about reflux for her daughter and a few of us replied. She had wondered if it could also affect the childs breathing. I wrote back stating that it definitely would cause issues with breathing and the upper airway along with pain and discomfort. I had also wrote how A has had life threatening events related to his reflux and that I wish there was a cure for it. Well it all began there. I had another mom tell me that “there is a thing called a fundo and that cures reflux.” Are you kidding me?!
Now, anyone that knows me knows that I do a TON of research on all of A’s issues. There is NO CURE for reflux! This is a very sensitive topic for me because I have been dealing with it now for a very long time. If there was a cure for reflux then there wouldn’t be babies/children/adults suffering every single day. There wouldn’t be babies/children dying from this nasty diesease. And most importantly, if this WAS a cure then A would have had one a LONG time ago!
Don’t get me wrong, I do know moms from my reflux group that I am part of that have had great success with the fundo. BUT and this is big BUT there are way more kiddos that have had one done and now have more issues than they did before. And that is not something that I am willing to put A through. Plenty of these kids have had to have the wraps redone. Some three, four times. Some kids have retched so bad (retching can be a side effect) that they end up with their feeding tube out of their mouths! One little boy was retching so bad he spit out a staple. Why on earth would I want to take these chances with A?!
Anyhow, I am off to get ready for my night of partying!
Well I guess I have been slacking a little bit when it comes to blogging but I have a new hobby! Scrapbooking! I have so many pictures of A and have always wanted to scrapbook all of his pictures. However I never knew WHERE to start so I actually never did any. I would buy things when I was out if I saw something I liked for doing the scrapbook but that is as far as it went. Well Andrea, my brothers girlfriend came over on Friday and brought all of her stuff and I did my first couple of pages. Now I am hooked. I guess it is a good thing because I have about 400 pictures just from when he was in the NICU sitting around.
Anyhow, A hasn’t been doing the greatest for the past little while as most of you know. The reflux, the vomiting, the blue spells are all starting to really have me concerned and frustrated. We will be seeing his GI doctor this week and I really hope that she is able to get him better or figure out what is going on.
Thursday I did some major cleaning in A’s room. I got rid of a ton of clothes that he doesn’t wear anymore and cleaned out all of his drawers and his closet. I had laid him in his crib while I was doing this because he seemed a little tired and to my surprise he fell asleep! This is the first time EVER that he has had a nap during the day in his crib. It didn’t last very long, maybe 25 minutes but it was exciting.
Friday his PSW came over and I was just updating her on A having his big spell when all of a sudden I thought he was going to show her what I was talking about. He was VERY off colour and not doing well. I gave him a bunch of ventolin and eventually he was okay. He did not go into a full spell but he had me very scared. I called to order some suction catheters as the ones that I have here are from when he first came home and very tiny. So my dad went and picked them up and brought them over. I thought that maybe it would help him because he sounds so “gunky” but I was wrong. I went down one side of his nose and didn’t get much out. He had tears and was very upset and I just couldn’t bring myself to do the other side. Had I have gotten a lot out the first time then I probably would have but it wasn’t worth it.
He was very upset pretty much the whole entire day and was not himself. Even Dawn had commented on how he just wasn’t right. He is fine as long as you are up and holding him but he doesn’t want to sit, lay or do anything but snuggle. Dawn had him down on the floor playing with him and then all of a sudden he had a HUGE projectile vomit. It was all over the place. There was so much that it soaked right through his clothes and got it all over her pants as well.
Uncle S and Andrea ended up staying for dinner on Friday night and A had to be shown off in his stander…
Saturday A seemed a little bit better, but still a lot of vomiting. I just don’t understand how someone so little can throw up the amount that he does. It just doesn’t make sense to me. You can tell how much it is affecting him though because he isn’t AS happy as he usually is. His naps have also shortened in length and he usually wakes up crying. Definitely NOT the little man that he was.
Twice on Saturday he also went so off colour and had this look like he had just come out of a spell. It was really strange and I don’t know what to think about it. Daddy put him to bed after he had fallen asleep on him and the minute he was put down he let out this horrid scream and when I turned on the light he was very blue and had that look I was talking about…the end of a spell. I can’t even describe it, it is something that you have to see. So I immediately picked him up and got him calmed down.
I went out Saturday night late after daddy got home from work to get stuff for my scrapbooking. While I was at Wal-Mart I walked by a little boy with his dad. He was maybe 4 or 5 and he was in a motorized wheelchair. Well my tears just started flowing. I think it was seeing this cute little guy in the chair that made me realize that one day that is going to be A. I don’t know why it hit me then, I see people in wheelchairs all of the time. I think maybe it was because this little guy was so young. I don’t think it helped that he was with his dad and they were looking at tackle boxes. The boy wanted one. So they were trying to pick one out that he wanted. It was really sweet. I really wanted to talk to the dad but I didn’t get up the nerve to say anything.
Here he is asleep on daddy late Saturday night…
So today has been another crazy day. He was pretty much good all morning vomiting wise but then it started. And boy are they ever projectile. And just tons and tons of bile. We went over to grandma and grandpas tonight to have dinner and just get out for a bit. He had a few of his vomiting episodes over there with the last one really upsetting him. I was sitting on the other side of the room and knew from the sound of it that it was projectile. Sure enough it was. More bile. He even had it coming out of his nose and was crying as well. This is also something that he never used to do (cry). It was a good few minutes before he settled down.
I have also been noticing lately that his breathing is odd. It is like he is struggling to get air into him. Very long pauses…wow, I feel like it is the beginning again when we first brought him home. It really sucks because I feel like there is nothing I can do to help him. I hate to see him this way and I am getting frustrated with doctors as well.
Now some pictures from today…as you can tell lately from my pics, A isn’t the smiley little guy he was. Don’t get me wrong, he still has them in there but you can really tell that whatever is going on with him is bothering him.
My little man is now 22 months old! (As of yesterday) I cannot even believe that in just two months he is going to be turning 2 years old!
Yesterday A’s dietitian was here to weigh him. He is now 22lbs13oz! He has been gaining 15grams per day average which is great considering that he has been at 45ml/hour for a long time now.
So today Leanne came from the company that deals with all of the equipment for special needs. She brought over the superstand for us to try using with A for a bit! It was so exciting. I really am not sure which stander I like better though. The buffalo stand that we tried a while ago was more compact than this one and didn’t take up as much room. However this one I believe gives A more support. I think this really helps with him feeling more secure. With the buffalo stander you could tell that he wasn’t really liking it after short periods of time. This superstand really helps hold him secure. I hope that it will help him feel more relaxed and able to use his hands/arms more than usual. So we will see how it goes and then we will decide which one we want to order for him.
So the reflux issue is still a problem. He has been doing a little better with the amount of vomiting but not even close to what I would consider okay. I have also noticed the past week or so how much he drops his sats. Very frustrating when we thought we were past that. It is very obvious that it is the reflux that is causing this issue. I will be taking him to see his GI next week and I am hoping that she will be able to help him out in SOME way.
Grandma was here today and she had A holding some different things…
First is his little shaker…
Grandma’s granola bar…
Grandma’s banana…look at that curious face!
Open wide!! (The funny thing was he was licking the banana!) He didn’t gag or throw up! I was so excited that I took a bit and mashed it up and then tried to spoon feed it to him. Right when it went in his mouth he threw up. He sure did like just licking it though and getting the taste that way. But hey, it was a step for him!
I just LOVE this shirt on him! I bought it at Christmas for him and thought it would be way too big for him but it fit pretty good!
A in the superstand…what is that face all about?! (Might I add that those are just the most gorgeous blue eyes EVER!)
My smiling little man…this however is the only one in the stander with him smiling. I tried and I tried but nope he wouldn’t do it. Strange since he is normally the smiling king!
The collar around his neck is not part of the standing frame. We just received that today though for him to help with support. In the stander he cannot be straight up or even close really or else he pulls his head forward and it will fall down and he can’t lift it up. So this collar doesn’t let him do this. I found that it worked pretty good in the stander because that way he could be standing right straight and not have to worry about having his head flopping down.
Well I am sorry that it has been a while since I have done a post! I know that I have received a few concerned emails from people. I am happy to report that A has NOT had another of his life threatening events. I also wanted to thank people for their concerns, caring and thoughts on what could be happening. I do want to say that we know it is NOT bronchospasms. The only answer the docs have ever had was that they are ALTES-apparent life threatening events.
I took A to see his pediatrician on Thursday. I of course knew that he wouldn’t have answers for me as to why he has these ALTES. We both did agree that it is probably related to his reflux (which most ALTES are) because of how bad it has gotten over the past couple of months. So we increased his prevacid from 15mg/day to 30mg/day. I really hope that it will work! 15mg is actually an adult dose already so I hope the 30mg stops his vomiting.
Now his doctor was also a little concerned because like I have said, ALTES usually occur to babies under the age of one. With A almost being two this is strange. Does this surprise anyone that knows A and his history? NOPE!
IF he was to have another spell we are supposed to start CPR right away and call 911. Now with A’s history we of course know that by the time the ambulance was to come A would probably be fine, but like his doctor said it could be the time when he doesn’t start to breathe again and then at least they will be on the way. I can’t even tell you how scary this is for me. I have ALWAYS been a worrier and now having A can really be hard to deal with the worrying that goes on. There are some nights (I find nights worse for me) that I lay in bed and will think and think so much I get crazy with it! I don’t know what I would do if I lost A and at night when I think about it I can just keep it going on and on. I think about if he did pass, what would I do? Would Jeff and I stay together? What would I say at the funeral? It is nuts, but because I worry TOO much sometimes it is hard!
Anyhow, I will start with a few pictures from last week that I never did get to post. These first ones are him sitting like a big boy in his cool Cars chair!
A and his best buddy…
My little man sitting on the couch…
Now on Thursday evening we all got packed up and headed to C-town for the weekend. I was VERY nervous about even going of course with A having that spell but I figured that it didn’t really matter where we were.
We didn’t get in to grandma and grandpa’s house until around 11pm. A was very tired so we just got him ready and put him to bed.
A sitting in his seat watching TV…
A cuddling with daddy…
A and grandma…she was very tired! She had waited up for us on Thursday night to get there and didn’t get to bed until just after midnight and had to be up for work at 4am. Then she worked a full day on Friday and this was VERY late!
Okay now we are onto bath time. Daddy and I had given him a bath in the morning on Friday. A has always been VERY vocal in the tub and LOVES the water. So we love to just sit and listen to him and watch him move around. The kid really thinks he is swimming or something because he is SO active!
Anyhow, lately A has been playing with the sound “ffff”. Well, I am happy to report that A has said his first word (we can’t count it though really since he has no hearing!) and all of a sudden he said “*uck”! J and I looked at each other and back down at A. Of course we know that A has NO IDEA what he said but in a silly way we were excited that he said ANYTHING! I then said to J how A has been playing with his “fff” sound lately and it was probably just one of those things. Well wouldn’t you know it he says it again! We were bad and started laughing (which I know you should NOT do) but it was too funny. And when you have a child that has NEVER said anything it is still exciting.
So we tell grandma and grandpa and they kind of brushed it off of course. Well this bath below A was going on and on. Grandma was up there with us and all of a sudden A says “*uckin”. WHAT!??!!? Well there were three witnesses to this one and it was DEFINITELY what he said.
Well now onto the adorable bath pictures….
A sleeping with Lady curled up with him. I had to take this picture because Lady never really wants anything to do with A. She has never really been interested with him since he has come home but yet she wanted to be there constantly. We only took her with us and Cujo went to grandma and grandpa Clegg’s.
A and daddy watching the Leaf game. Wow that was quite the game!
Easter morning. Well I should say afternoon! Grandma and grandpa got A this Toronto table!
Aunt K and A at great grandma and grandpa’s for dinner last night.
A and great grandma…
Well it has been a very interesting day. A didn’t get up until almost 10am and wanted to go back to sleep at about 12:30pm but I had to get him ready to take him to the ped. So things went good there. He got his RSV shot and did so well! He held his breath for about thirty seconds but he didn’t even cry. I talked to his ped about the vomiting and the low grade fever but he didn’t seem too concerned. With A I have learned how difficult it is to get answers on him. I asked him for a prescription for Zantac to add in to possibly help with the reflux a bit more. I really am starting to go crazy with all of the throwing up. The dry heaves and gagging is also taking its toll on me. It is so hard to deal with! I can’t even imagine how A feels when he is the one doing this all of the time. So we will be going back in a month to tell him if there is any difference with the Zantac. I am not too hopeful as it is only an H2 Blocker, but maybe it will give a little more relief. I know that the stuff he has been throwing up for the past month is very acidic because of the smell of it.
Anyhow today was kind of a crazy day on the Internet. There is a lot of talk still going on about what I discussed yesterday. However it has more or less turned into “would you change your child with special needs?” WOW what a debate that has caused! I was reading a blog that I do daily and it was saying basically how people are crazy if they say they wouldn’t change their premature babies life. Then it went on to saying how she hears parents of special needs children say that they wouldn’t change a thing, and she couldn’t understand that.
So I felt that I had to comment. I basically said that I was one of those moms who said that and I meant it. I said that A is who he is and if he were any different than he is now then I wouldn’t be the mom that I am and he wouldn’t be the child that he is.
I went back a while later and there was a comment back saying that she wasn’t disrespecting anyone but she just didn’t get it. Then it said that if I was comfortable watching A in pain then she was happy for me! I couldn’t believe it! I NEVER said anything about seeing him in pain. I said that I wouldn’t change him. Sure I wish I could take the pain he has away but wouldn’t any mom do that if she could?
Next a lady said she wondered if I would be saying the same thing when A is 21 years old. Give me a break! I think that my acceptance with A and his issues has brought me a lot further than some of these moms have EVER come with their child’s disabilities!
So I decided to post a question on the reflux parent group that I am part of. Of course it was directed at the moms with special needs kids. WOW, it sure has had a lot of comments! I would say it is half and half. Very interesting to me…I don’t think badly of anyone that says that they would change their children, so I don’t think it is fair to people to jump all over me about saying that I wouldn’t change a thing.
You know having A at 24 weeks, spending 227 days in the NICU, being in the PICU, finding out he has cerebral palsy, finding out that he is deaf, finding out that his eyes aren’t the greatest, having him on a feeding tube makes him the little boy that he is. This whole ordeal from June 10th 2005 until now has made me the strong mother that I am. I can’t even begin to tell you how much A has changed my life. How different I am as a person. How I look at life SO SO differently now.
Anyhow I think I have rambled on and on enough. I just get so frustrated with topics like this. How many times do I need to say that having a child with special needs is not a bad thing!??!
I am the luckiest mommy in the world to have this gorgeous, happy little miracle!!