Is about the only thing I have been feeling lately. You know, I look back to the days of the NICU and you think for some reason when you leave there that things are going to be okay. Things will never be like they were there. But that is so wrong. I find myself more worried, more stressed and more confused now when A gets sick than I did way back then. It totally sucks. I mean for real. He is going to be four in June and yet the nightmare continues. The worrying every time that he gets sick. It is always in the back of my mind that something horrible is going to happen. That my absolute worst fear will come true. That I won’t have this smiling, adorable little guy here. No mother should have to think of this when her child gets sick. But it is just yet another crappy thing about being the mom of a preemie, the mom of a child with special needs, the mom of a child with many health issues. We are not oblivious to ANYTHING and know that ANYTHING can happen.
So A has been sick since the 16th of February. Februay 18th I was told that he had pneumonia. Last Wednesday he seemed much better. Same goes for Thursday. Thursday night however his nurse woke me up and told me that she thought he needed oxygen because his sats would not stay up. (She does not have an order for oxygen therefore has to wake me up in these circumstances.) He did fine on 1/2L.
Friday morning he is fine. Doesn’t even need the oxygen. Friday was a good day. He had three workers here and did great with all of them.
Friday night went to bed fine. (I did have him on 1/4L because it seemed that at nights was when he was needing that little bit of help.) Wow, what a crazy night. He was AWFUL. At 5am I really started to get nervous. He was not going above 80 and if he did it was not for long. I had him up to 2L and it was not doing ANYTHING. I held him and that didn’t help. Finally about 6:30am he settled back down and was satting 90ish on 2L.
By 8am I was in his room getting him up yet again freaking out.
Talked to my parents around 9am and thought I needed to take him to the hospital. I figured I might as well change his oxygen tank as I knew that it was getting low and wanted a full one for the trip. Shut off the tank and then went downstairs to get a new one.
Come up and he is satting in the 90s with NO oxygen.
Talked to my mom and told her that I wasn’t going to take him. Pretty sad when you hum and haw over taking your sick child to the emergency because you know pretty much how useless it is going to be!!!
Had an okay day yesterday. Only needing 1/4 or 1/2L to sat well.
That was until he wanted to sleep. I held him (he only cuddles when he is sick!) and he fell asleep. That lasted about ten minutes max. As soon as he goes to sleep the difficulty breathing and crappy sats start.
Stayed up for the rest of the day. Was good.
Last night he was exhausted and I put him to bed at 10pm. Was asleep within 15 minutes, on 1/2L with sats in the 90s.
I headed to bed as I could barely keep my eyes open. Daddy stayed up so that I could get at least some solid sleep.
3:30am I am up to the lovely sounds of the monitor. From 3:30-5:30am I did everything I could think of. Turned up the oxygen, gave him a breathing treatment, did nose drops, checked his temperature, did some deep suctioning. You name it I tried it. Sats would NOT come above 90. He was snorty, tired and just having a crappy time. I picked him up hoping it would be a bit better. He was good until of course he would fall off to sleep.
I just held him and cried my eyes out. I am sure that my pregnancy hormones do not help with this, but I friggin HATE what my poor guy has to go through. It just isn’t fair. It sucks and that is the bottom line. And it sucks even more when I am worried but yet scared at the same time to take him in. I mean really what are they going to do different for him? The only thought I had was that they would most likely vent him and because I know he is fine awake I am not okay with that. It freaks me out. I hope to God that I never ever have to see him vented again.
So ya, I just cried and cried. Told him how sorry I was. How angry I was that no one ever helps him. Sorry that he suffers way too much for being a three year old. How I felt like a shit ass mom for not being able to make him better.
Life really sucks sometimes.
But I try to remember the bright side. I have my son here with me. I can love him, cuddle him, kiss him.
And then he smiles.
Well once again I have been slacking. Things around here have not been that good and I am just tired, stressed and not handling things well right now.
I will start with some great news though. A was back to see the amazing Dr.Wiggins just over a week ago. And if you remember right, last time we were there I was told that A was not using his right eye to see at all. Which totally made sense as to why he was better with toys on his left. Well of course my little man is amazing and he is now using it to see!!!! Dr.Wiggins was very impressed with this as six months is not a very long time to start doing this and see a change. Would you expect anything less from A?!
I am sad to say though that A continues with having issues at night and his blue spells. This has been going on since November 6th. NOTHING has changed. He has also had a couple more of the “episodes” that are new that I was talking about a few weeks ago. He had one two nights ago on me and I was able to capture the end of it on video and he also had one last night at 3am. He was on the monitor as he was in bed and his sats went as low as 26. Heart rate didn’t go down and maybe elevated a little. Funny because I always forget to look at his heart rate and remember it as I am so focused on what he is doing and how blue he is. I did notice last night that he bites down VERY hard while doing these.
I am so stressed by all of what is going on and don’t really know how much more of it I can take. I am having a really hard time understanding why things just seem to be getting worse. I had to deep suction twice last night and this is something that I don’t normally EVER have to do. I hate doing it too which makes it worse. He cries as soon as he sees the machine and I get all teary eyed doing it because it is just not fair that he has to deal with this crap.
I am afraid this post is pretty negative but I just need to get it all out. It always seems to help me.
So we saw A’s doctor on Tuesday as he had to get his flu shot. I told him how things are not any better since our admission to the hospital on November 10th and that something is going on. He told me that he didn’t know what else to say or do. Well figure it the *$%^ out! No I didn’t say that but that is how I feel. He then went on to add that he feels it is just A holding his breath and told me that I need not worry about what he is doing. Really?! Need not worry? I am the one who deals with A 24/7. I am the one that watches him struggle every friggin day. I am the one that has to stimulate him, blow in his face, try to stay calm when he completely stops breathing. I am the one that has to think in that second of whether or not to call 911. I am the one that cries after every episode because it scares the crap out of me. I am the one who screams why why why. How do I not worry?! These are NEW episodes. They are DIFFERENT. And they are in no way breath holding. Besides that was the explanation for the last episodes and these are different. But for real. It is all just a bunch of bull.
I thought that I figured things out the other day when I noticed that the Nutren 1.5 that he has been getting (one can a day) along with two cans of Nutren Jr w/fibre was expired. This was on the 27th that I figured it out. He had 22 cans of the expired formula which would take us back to November 5th. Perfect timing as things started to go off the night of the 6th. Well after some discussion with the pharmacy, Nestle and other moms this probably is not the reason. Why? Because when making expiry dates they are extremely generous as well as the fact that no bacteria can get into the can. They were dated March 2008. They never smelled bad. The only thing that would likely happen is that the nutritional content goes down. He has been getting GOOD stuff for three nights and nothing has changed. If anything these past three nights have been worse.
Mommy instinct tells me that his tummy is bothering him. It is what is waking him up. It is what is keeping him up crying and fussing at night. But what do I know? That is the feeling I get when I tell doctors what is going on. I will be once again emailing his team at Sick Kids. I have to go into clinic to discuss anything which is fine. They need to check out his belly and they need to order an EEG. Not just a 15 minute one either. And I would also like a ph probe done as I really notice a lot of reflux lately so I am curious as to what is going on there. I don’t think this is too much to ask from a mom that is frustrated angry and tired.
The new team of doctors said that there is no reason for A to be staying in hospital. No reason for what he is doing. They want to get us home. I got called into a meeting yesterday that I didn’t even know about and within five minutes I was crying. I just can’t stay strong anymore. I am way too emotional. I am worn out and I am frustrated. I just don’t get it.
The docs just came in about an hour ago and once again I was crying. They said that they would like us to go home on a “pass” and come back Monday for the ph probe that he will be having done. I asked how it was okay to send a child home doing what he is doing when it wasn’t okay for us to leave 9 weeks ago when we got here. How it is okay for him to sat 20s on and off throughout the day when 9 weeks ago it was only the 70s. I am beyond the point of understanding I think.
They told me that they don’t do anything for him here when he has these episodes. Yes this is true but that doesn’t make it OKAY! So they figure that I can just deal with it at home because I am here. They want him home on a monitor though. Nice that I came in here without this and now I will need one.
The past two nights he has had episodes where he actually needed stimulation. What if I don’t hear the monitor? What if he needs stimulation and I am not there to give it? I get to wake up to a dead child.
The episode two nights ago he was satting 15 when he required stimulation. One of my nurses was here and the doctor said that under 40 the monitor isn’t accurate. The nurse said that didn’t make sense…then the monitors should stop at 40. The doctor then said that it just isn’t accurate with numbers. Well the nurse said “so then he could have been 15 then.” Nothing to say to that. Nothing like seeing a child sleeping so peacefully, breathing, off colour and satting 15.
I told them that they haven’t done anything really. They haven’t proved that he isn’t still refluxing. I haven’t seen cardiology. I haven’t seen neurology. I haven’t seen genetics. They did a sleep study when he was requiring oxygen which isn’t typical. But how do you fight with doctors when they are the ones to make the decisions about what goes on? How do you make them see it your way?
I don’t know what else to say. Just thought I would update.
Well I should have known not to say anything about A having such a great day! The desatting started again last night and he had a pretty unstable night. This morning it was constant desats to the point where I took him out of his chair, put him in his stroller and took him for a walk. I am just SO tired of hearing the beeping and seeing him drop SO much. It is getting SO frustrating!!!
The chest team and complex care doctor came in around noon and wanted to try out the NPT tube (nasal trumpet). I said no at the time but as the day went I thought it would be worth a try. I knew it was pretty far feteched and too easy a cure but I said okay. I could feel my heart pounding and my eyes filling with tears just thinking of it. I cannot stand feeling like I AM the one putting him through all of this nasty shit.
The NPT tube is NOT nice to look at and I cannot even imagine having it put through my nasal cavity and into my airway. I told the RT when he came in that it looked big but he said it was the right size. I asked about how well it is handled and he told me that once it is in you don’t know it is there. Hmmm really? I then asked if he has put one in and knows this or is this just what they think? This is what they think. I then said that I had to leave because I just cannot handle hearing A scream and cry. Then I feel like a worse mother for not being able to comfort him at times like this. It really breaks my heart though to look at him and he just has NO IDEA what is coming.
So I left and came back about ten minutes later. The RT said that he tried both sides of his nose and the tube was too big so they were waiting for a smaller one. WTF!??! When are they going to learn that mothers know best?!
Anyhow the tube is now in and he is doing okay with it in but it definitely isn’t changing much. He is still desatting and doing all the things he was doing without it. It has also made him more junky sounding and is needing the odd suctioning. Poor guy SEES the suction tube and he will drop to the 40s.
I am giving it the night but there is no way that I am going to be keeping it in with it not helping. The RT came by tonight with another one and said there has to be a spare at the bedside. LOL I told her that if this one came out then that was it. She asked me if the docs know this and I laughed and told her they probably would.
I am at a loss really for thinking we are going to find the answers to what is going on. I just don’t know what they could be missing, but they ARE missing something.
Well shit finally hit the fan. Today has been absolutely crazy to say the least and I was raging since this morning. ALL DAY and I mean ALL DAY A has been fussing, crying, turning blue and satting pretty much under 90 from 9am until 2pm. NOTHING could settle him.
The complex care team came in this morning and it started off my frustration. They asked if I was willing to start the iron and I refused. I told them that I thought it was ridiculous that they thought iron would “cure” A. I told them how I was frustrated with what is going on and nothing being done. There next answer? Well how about we try him with a nasal tube that will keep his upper airway open? Hmmmmmm NO. I mean honestly is this the best that these TOP doctors can come up with?! I told them I wanted to speak to the lung doctor I first dealt with. They told me that I could talk to the fellow. I don’t want the fellow. I don’t want the resident, I want the actual doctor. So when they left I asked the nurse to try. Didn’t work. The chest team said that if I had any specific questions that I could talk to complex care and they would relay it. What a joke.
After them leaving I continued to deal with A. I was crying pretty much most of today and I have a massive headache because of it. It is just killing me inside seeing A so upset. It is at these times that I just want to run screaming through the hospital. It is times like this where I just want to pack him up and go home.
After lunch a social worker came in to see how our hotel stay went the other night. She then asked if there was anything she could do for me and I laughed and told her “ya, find me a new doctor.” After telling her who I had she said he was pretty high up there so she didn’t know what would be next. I rambled on and on and of course the tears started to come. I felt like I was going to lose it. Actually, I guess I kind of did lose it.
Anyhow, she then asked if I thought about the Ronald McDonald and I told her I didn’t because I wasn’t thinking I would be here this long. I then told her that I was ready to pack up and go home. She thought I meant by myself but no, I meant with A. Well then she seemed very interested in what was happening. I told her in a quick five minutes update what has been happening and that I wanted to see the lung doctor that admitted us. Just as we were talking about him, the nurse practitioner that is on complex care came over. I got worse.
I am confused and not getting straight answers. ENT ruled out airway but yet really they can’t because they have to do a scope while he is awake and it wasn’t done that way.
Chest ruled out lungs from an x-ray. Said his underlying BPD isn’t that bad. Hmmmm really? Because I was told that his lungs were 40% fat and this was caused by chronic aspiration. Does that not seem odd? Add in the fact that he gets ventolin and q-var twice a day?
Neurology ruled out central apnea just from reading his MRI…..don’t know how this happens.
I was also told it could be reflux. This was the bomb. Reflux?! I did the fundo because they told me it was the final last resort to stop it. So how does that in any way mean reflux is still possible?
Cardiology ruled out heart from reading one previous echo from another hospital. All the PVCs and irregularities mean nothing. The dropping of his heart rate means nothing. The surgeons who have brought up shunting are crazy too
Anyways I said all of these concerns and how I was tired of being here. Tired of feeling like no one gives two shits what is happening. Tired of hanging out day after day. She said that they are concerned. I said “oh really? How is anyone concerned when my child is turning blue and yet NOTHING is being done?” She didn’t know what to say. I told her that I wanted a chest CT done, I wanted ENT to see me again, I want to see genetics. Well next thing you know she is paging the lung doctor I wanted to see. But yet they wouldn’t do this earlier? I was ready to go on a hunt for him myself. Funny how things blow up and things start getting done. None of this changes the guilt that I feel though. I feel like all of this misery is my fault. I signed the papers for the fundo and now A is miserable. It totally sucks especially when I never wanted to do it anyways.
So I waited and waited. No doctor. He can’t come until tomorrow. They are not dismissing lungs until they show me that CT scan that I want
I asked the nurse on tonight how often they see kids come in with sats like A. She said it is very, very rare. I asked her about the ones that are there like that, what are they in for…what is wrong with them? She said “lung disease”. Funny
Anyhow, the fire is lit under their asses and this one isn’t burning out.
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.
Well I have to say that I think I almost ready to scream, cry….I just don’t know. I am completely exhausted and feel sick to my stomach. I just don’t understand what the heck is going on around here. The nursing last night was absolutely awful and I just don’t understand how they can be the way they are when A is in a constant care room. I had to ask for his mask last night. I had to do his feeds. He is on 80ml/hour and then off for an hour and so on. Not ONCE did she come over to check if it was even going.
I then asked for the prevaicd solutabs and the resident surgeon on call came in and argued with me for about twenty minutes. She said that she didn’t want to make any changes overnight and wanted me to give the capsule dissolved. However this is not the way that it is supposed to be done with a g tube. I wasn’t asking for another med so I didn’t see the problem. Finally I just got tired of trying to be the one that is right and left it the way it was until this morning. Do we mothers not know best?!?!?!?
A had a pretty good day yesterday until last night about 8pm. He was screaming and going off colour and was inconsolable. I have NEVER seen him so upset and it was making me upset. I left the room for about fifteen minutes or else I know I would have said some things that I knew I didn’t need to. I thought for sure when I got back that something would be done but instead I walk into the room with A still screaming, still satting in the 60s and heart rate 190. I was just livid. I picked him up to cuddle and he settled after about ten minutes. Then the teeth grinding started. And I mean to the point that I thought his teeth would fall out. I mentioned it to the nurse and she paged the doctor. I told her I didn’t need the doctor but they came anyways. Answer? Nothing. Why is he crying and screaming? No answer. Finally I told them to give him some morphine. He never got weaned properly as his IV came out yesterday morning so they just left it out. This meant he went from having continuous morphine for four days to nothing.
I was just about ready to pack up all of our stuff and leave. I have been strong for this past month that we have been here but I have had enough. I can tell you though that so far I am EXTREMELY happy with the fundo and g tube feeds. It is so amazing how well things are going that way when I was so against doing the fundo in the first place. I don’t want to jinx it but so far it couldn’t be better! I am going up to 120mls an hour at noon today and then off for two and so on. I hope this goes well too. I don’t think the crying has much to do with the feeds because when I vent his tube about twenty minutes after the feed there is nothing in his tummy which means he is digesting it well. The surgeon did say this morning that the feeling of food in the tummy might be bothering him as he isn’t used to it. As well he said that A shouldn’t really have that much pain anymore from the surgery but he did say that NOT having reflux is probably VERY different for him as well. I mean his whole life all he has done is reflux and reflux and now he isn’t at all.
Anyways I am sorry for the not so positive post but I am at the end of my rope. I guess I should get back up there….who knows what he is doing.
So we are still here and not going home. I told them that I was not comfortable taking him home with what he is doing. They then said that this is what he has always done…basically asking what the difference was. The difference? I am sick and tired of seeing my child go blue. I am sick and tired of his crappy sleep which I truly believe has to do with his desats. And now after seeing him on a monitor for the past two days it has made me realize even more how crazy it is. He is CONSTANTLY ringing. Constantly dropping. Constantly going off colour. I told the nurse that we need a monitor that rings off when he is satting above 90 instead of below. It would definitely be going off less.
We are in a constant care room. Means 24 hour 7 day a week monitoring to me. Well the girl next to us had her IV ringing for about 30minutes…no nurse. A was in his bouncy chair satting 60s, crying and off colour. No nurse. (Sorry but I am just a bit bitter right now.)
So the doctor who talked to me earlier who said that she would come back has not. That was 7 hours ago. I still have no idea how the probe looked or what is next. Nice way to leave a parent hanging for the weekend eh?
Well I am pretty upset right now to say the least. The doctor just came in to speak to me and there is talk of A going home!!!!!!!!!!!!!!!!!!! They say he is stable. Stable?!?! Dropping oxygen saturations to the 30s, 40s, 50s etc 223 times in 6 hours is stable?! The answer…he does this at home!!! I just don’t know what to do anymore. This is absolutely crazy. I told the doctor this the other day when he said he wanted to admit him. I said that nothing would be done. And it seems that I am yet again right. I just don’t understand. I am angry, hurt and frustrated.
To top it all off A has a fever so they did blood cultures and a swab for RSV. Yes, RSV. The floor he is on contains tons of sick kids with RSV and rotovirus. I’m so flippin mad!
Is there ANYONE out there that will EVER help my little man?
Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!
Hanging out watching football…
Notice how he is holding BOTH of his socks! Way to go A!
Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.
Mommy in her scrubs and one happy boy!
At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.
The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.
The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!
Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.
When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.
At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL
FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!
We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….
So I thought I would catch up on a few pics and stuff for today. I will start with the good pictures 🙂
First things first I guess! A very happy birthday to Olivia and Avery who turned 2 years old today!! They were born at Mac as well. Yay, birthday party tomorrow!
I want to thank everyone that came to A’s birthday party again. It meant so much to have all of you there to celebrate the day with us! Here are some more pics from that day.
I have to start with Alina. Her mom sent me this picture since she was not able to come and she is SO sweet!
Thanks Vickie for those pictures!!
I got a great call today from one of my workers that I have for social services. She handles all of the money that I am allowed for each year to provide respite care for A. Well she had some extra money around and it can be used for camp for children with special needs. However A is not quite old enough for camp so she thought that maybe he would enjoy music therapy and it would pay for that! I am looking forward to the information that she will be sending to me about this therapy. I think it will be wonderful for A to do and I am sure that he will enjoy it.
Now for some not so nice pictures. On Wednesday morning when I got back to A after having a little sleep down in the constant care room I noticed a bruise on the front of his leg. I didn’t really think much of it until later on when I turned him over to sleep (he likes to sleep on his belly). Then I noticed three more bruises around the back. After a couple of minutes of searching him up and down I realized that the marks looked like a hand. I called the nurse that was on over and showed her and she didn’t really say much.
Wednesday night when we got home I showed J and asked him what it looked like to him. He said the same thing. A hand.
This is very upsetting to me because these nurses at Sick Kids are supposed to be part of an amazing hospital with many professionals. I don’t know what happened exactly but I can assume that someone was frustrated with him and grabbed him around his leg. That Tuesday night when I went down to sleep he was VERY irritable and not comfortable at all. I was VERY irritable with the nurses because they would not give him any more pain meds and it was very obvious that he needed them. I eventually just told his nurse that I needed to go and get some sleep so that I could come back a bit more sane. Hmmm maybe I should have just stayed.
On any note, the pictures are not the greatest and were not taken until Thursday here at home so the bruises were fading. Pretty sad isn’t it?
Well it was a crazy couple of days down in Toronto at Sick Kids. A, daddy and I went down on Wednesday night to save us the drive Thursday morning as A had to be at the hospital for 7am. We got down there about 8:30pm and went and checked in our room and then headed out to get a bite to eat. WOW, I cannot believe how many sketchy people are around down there!
After having dinner at the Golden Griddle we went back to our room to try and get some sleep before having to be up at 5:30am. A didn’t go to sleep until about midnight and I didn’t sleep very well anyways. Strange to be right beside him sleeping!
Thursday morning we headed out at 6am to walk over to Sick Kids. We weren’t sure how far it was exactly, but it only ended up being about ten minutes which was nice. I was very frustrated from the beginning of our stay with Sick Kids. We had taken him down to MRI and then they decided that they needed to do an x-ray to make sure that there was no suture inside his stomach from his tube. I told them that there wasn’t one and they had to be 100% sure just in case as metal cannot go into MRI. This was something that should have been checked before the day of the MRI. Anyhow it all worked out well and he was then hooked up and put to sleep. We were then asked to leave the room so that they could get the IV in and just in case they had to put a tube in.
J and I headed back to the hotel to check out and then grabbed some breakfast before heading back to the hospital. At 11am we were called in and went back to see him in recovery. He looked pretty good considering he had just woken up from an anesthetic. (I was pretty emotional waiting for him to come out of the MRI thinking that the next time we will be there will be for the surgery. I can’t even describe how I feel about it but I know that the day we are there for that there are going to be a lot of tears!)
They had him on six litres of oxygen but it came down to about a litre within an hour. He was then moved up to the constant care room on the fifth floor. The nurses and ENT resident were very concerned about how A drops his oxygen sats and how low he goes. It is starting to really bother me as I know that it isn’t normal and something should be done to figure it out. On the “okay” side of this, the ENT resident did say that because A has always been like this with his sats that they look at him as “chronic” and therefore that is probably why no one is very concerned about looking into it.
Grandma and grandpa came down for a bit to see how things went and to visit with A. J and I went back to the car parked at the hotel to grab A’s bag and stroller.
I decided that because A was in the constant care room that I would go home for the night to get a good sleep. Just before we left A decided to pull out his IV and there was blood EVERYWHERE! I got him cleaned up and then we headed out. My gut was telling me not to go home but I did. When I got home I was pretty upset and felt like such a bad mom.
Yesterday morning, grandpa came to pick me up to head back to Sick Kids to pick A up. We got there at 9:30am and I thought that he would be discharged soon after getting there. However that was a whole other story once we got there. The nurse came over and told us that his feeds were stopped during the night because “it was pouring out of his stoma site”. I said I didn’t believe that as he has had the tube for so long and never once have I seen that happen. She said that the night nurse told her that the bed was soaked from it so they had ordered a GI study to see what was happening. They were just about to start an IV and I said no, that I was starting his feeds up. The doctor came over and said that we could do that and see what happened once it was running. This was 10:30am.
At about 12pm there was no leaking and told my dad that we could leave. On the other hand I was worried now that IF there was a leak we would get home and then have to go to Mac to get it looked after. So I figured since the study was already ordered we might as well wait for it.
At 2:30pm they called us down to radiology. We sat there until 4pm!! Anyhow we went in and the doctor put some dye into his tube and said that it was fine. Then he looked a bit closer and said that there was a tiny leak in the middle of the tube that was in his stomach. He showed me but I told him that I wasn’t worried about it because this was the first tube that A has had that has NOT caused a lot of vomiting issues. Before I could say anything he took the scissors and cut the tube right off! He said he was going to just put a new one in. I was NOT happy! A was very upset as the doctor was not being gentle at all. He was satting in the 40s and they weren’t even worried about giving him a break to settle down. He was screaming at the top of his lungs and I was trying hard not to cry myself. It is VERY hard to watch things like this happen.
When we got out of there and back to the nurse that had come downstairs with us I started crying when she asked how it went. I told her I should have just gone home and not bothered waiting for the study. The other nurse told me that she would get the doctor for me to talk to but I said no, that I just wanted to leave.
We got back upstairs and I calmed down. A was tired and went back to sleep. He was satting between 88-90 which was bothering me. I placed the oxygen in front of his fact and he would go up to 98. Take it away and he would go back down. I think that he needs to go back on oxygen because it is obvious that it is helping him. When he was sleeping earlier in the day ON oxygen he didn’t go below 97. So I will calling a few doctors next week to see what they think we should do.
Anyhow, we didn’t end up getting out of Sick Kids until 6:30pm. We are VERY happy to be home for sure!
So now we just wait to hear from the cochlear implant team about whether or not A is a candidate and hopefully get the date for the surgery!!!! I am sooooo excited that my little man will be hearing my voice!
My little man this morning when I went to get him was at the bottom of his bed…
So it has been a few days since my last post. Friday night we ended up finding a bike trailer for A! We went to a sport store in Guelph and they carry the Chariot brand trailers. We put a helmet on A and sat him in this one and he was perfect! It has really thick harness straps that hold him in perfect and behind his head there is room so that the back of the helmet has its own space. I have to tell you thought that he HATES the helmet! I think once he gets moving though he will be fine. I also will probably have it on him throughout the day for a while to help him get used to it. So we should have the trailer by the weekend for him!
Saturday daddy worked a VERY long day. A didn’t get up until about 9am and we hung out here for a while before grandma came and picked us up. We went and had Dairy Queen before heading over to grandma and grandpas for the evening. A had a great nap on Saturday once again!
Sunday A didn’t get up until about 10:30am. I took him with me to the grocery store to pick up some stuff to make a broccoli casserole for dinner at grandma and grandpas again! They barbecued a roast so it went great with it! We all helped Aunt Shorty move some of her stuff into her new place as well. I always wish that she was more involved with A and his life but I guess that is a normal feeling. I have that same feeling with a lot of people.
Today grandma was here and A was still in bed when she got here! Yep, he didn’t get up until about 10am. I cannot believe the difference in him since I pulled his tube out by accident two weeks ago! (And yes, STILL no vomiting!)
So after getting A ready this morning we headed out to Cambridge to go to Michaels. I was very disappointed with the selection for scrapbooking! Someone really needs to open a scrapbook store around here!
Deb was here this afternoon to work with A. (She is his auditory verbal therapist.) I am getting very anxious about this whole cochlear implant process with A. It is like I worry so much about it that I feel sick to my stomach. His MRI is coming up and that has me worried enough. When it comes to a general anesthetic and A I always feel like this. Right now I am just so worried that they are going to tell me that A is not a candidate for the surgery.
I was also a bit emotional and upset today after Deb left because we had a little chat about where she thinks A will go after the implant if he is to get one. My biggest wish is to hear him say mommy, I dream about this happening one day! I get tears in my eyes just imagining him saying it to me! But for some reason deep down I don’t think I will ever get to hear my baby call me mommy. I want so bad for him to talk! It is the most heartbreaking thing for me to think of right now. I can’t even continue with this right now, so here are some great pictures from his shower tonight with daddy.
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.
Well my little man was admitted into the hospital yesterday. Tuesday night I put him to bed and around 1am Wednesday morning he was up and fussing. This went on the entire night. Grandma was here yesterday around 9am and he was still very lethargic and had non stop movements. He just couldn’t sleep and if he did fall asleep he was right back up within ten minutes. I tried to get ahold of his GI team at Mac but they were not in yesterday and his ped wasn’t either, go figure.
Grandma left at 2:30pm and I took A’s temperature because he felt a bit warm. It was almost 104 so I gave him some advil right away. After an hour I checked his temperature again and still no change. At 6pm I gave him some more advil and his temperature came down to 103. His mouth was very dry so I got my syringe out and put water in it. He was going nuts! So I decided to get out a bottle and try that…take a look.
You can see how sick he is in the pictures but I had to get him with that bottle. When I would take it away he would fuss and stop as soon as he had it. So after about two hours of him sucking on it guess how much water he took from it? NONE! LOL
Daddy came home around 6:30pm and I decided that we needed to take A into emergency to get some x-rays done. His breathing by this point seemed labored and he just was not happy at all.
We got into emergency around 8pm and they took us right back. Upon putting a saturation monitor on him, he was only satting in the 70s so they put some oxygen on him. The doctor wanted to start an IV but I told him I wanted to blood work done first and then we would discuss the IV.
They did a chest x-ray and an x-ray of his belly because I was worried that his tube wasn’t in the right spot and there may have been a possible obstruction. The blood work came back that he had a very high white cell count which definitely means that he has an infection. The liver count was also a little high, but his doctor said not to really worry at this point. The x-rays both looked good so I guess that is a good thing.
His ped actually came into the hospital to see him about 11pm and that is when he told me that he wanted to admit A and that there was no way that he was going home. He said that he would do an IV and I told him that I get upset when it takes them many pokes to get one in. He looked at A’s hands and said he could do it in one. So I said okay. However after two attempts it still wasn’t in. I know that he felt very bad, but A was so lethargic that he didn’t really seem to care what they were doing. His ped said he wanted to try one more time and if he didn’t get it he would run pedialyte through his tube. Third try, no go. After some more discussing of the issue he tried ONE more time in his foot and got it in.
We were taken up to a room at about 2am and I was hoping after such a long night the night before and a long day that he would sleep wonderful. Nope not a chance. He was just as bad as the night before. It is so heartbreaking for me to watch him like this and there is nothing I can do.
I have had about three hours sleep in the past two nights. Today for A was just as bad. His fever was still up at lunch so they gave him some more tylenol. At about 2pm I was so frustrated that I went over to the nurses station and told them that they needed to order some medazalam for him. The nurse came back and said the doctor said no because it is too strong for him! I told her I had a prescription for it at home to use so they could do it.
3pm, A was very off colour and just boiling. I went and got the nurse and she immediately called his ped and he came over to see A again. It was then that he ordered the medazalam for him and said he wasn’t going home today either.
So anyhow, I am here just to make formula (they don’t make 30cal at the hospital) LOL and then I will be heading back. Joyce is coming to stay with him tonight so I am looking forward to coming home and sleeping for the night.
I will be sure to update when I can…..
Well today was much better than yesterday but I know that there is something going on. A was up pretty early this morning and was cuddling with Joyce while I got ready to go to Toronto. Grandpa was here for 9am to pick all of us up. Daddy came today too with us so that was nice.
We got to Toronto a little late but not much we can do to help the traffic. The hearing test was just like the past two. I saw some definite reactions to some sound but not consistently. At the end the audiologist (Ruth) figures that his hearing is still at about the 90db range. The next time we go he will have his test with his hearing aids so that will be nice to see then. She also brought out the kit to show us the implant and the devices that go along with it. I can’t believe how technology is able to make this work for people to learn to hear. I am so excited for the day that he will get it in and then turned on. I think the hardest thing for me since finding out that he is deaf is knowing that he can’t hear his mommy talk. That really hurts knowing that I am not able to comfort him by voice like so many parents can do. So the day that he hears me I am going to be in tears, I know it.
So we got home after lunch and A was right to sleep. Daddy went over to his friends for a bit and I stayed here to clean up a bit and rest. A was pretty lethargic this afternoon and just wanted to cuddle after waking up. Very quiet and not smiling. I hate to see him this way.
I went out for a little bit tonight to grab some things and when I came home I asked J if A was sick again. (Today it has only been about five times all day.) He said yes and it was ALL formula. I feel like just screaming. I just cannot believe what I have to deal with all of the time when it comes to his issues and doctors. So I am going to have to phone his doctor in the morning to get him to order an x-ray to check it out. However if it isn’t properly in place then we are going to have to go to Hamilton yet again. I don’t think I will be able to hold my breath if we have to go there again. I am so sick and tired of dealing with doctors that just don’t seem to know what they are doing. Anyhow I could go on and on but I won’t!
I bought A this little chair tonight. It is from the Cars movie and he seemed to like it. I try anything to let him see the world the way that he should be seeing it.
Well we were supposed to go to Toronto Sick Kids today for another hearing test but the weather made that a no go. I have to admit that I was very frustrated because I already feel like it is taking too long with all of their testing! The longer the wait the longer it will be before he can start learning to hear with his implant. I just sometimes feel that everything takes so long when it comes to A. I just wish people would move faster when it comes to helping him. In the beginning of this whole process they had told me that he would probably be implanted by February. Hmmm well that is just a few weeks away and now our last appointment is the end of March. And he hasn’t even had his CAT scan and MRI yet which I was told would be done in December. I haven’t even HEARD about the date yet. Agh…
I guess in the long run it will be okay because I am so caught in the middle of this whole implant ordeal. I mean I am kind of glad that the team at sick kids wants to make sure that they don’t rush with A because of his history. They want to be 100% sure that A does need the implant. I really feel sometimes like maybe A CAN hear but just isn’t listening. I know, I know it sounds strange but I have voiced my concerns and I am told that I am not the only parent to think this way. That makes me feel much better about my strange thoughts.
It is hard to deal with having a deaf child and you want to do what is best for them which in this case is a cochlear implant. Then the process begins and you start to question EVERYTHING. It is hard to think this way. I mean I was the only one that thought A couldn’t hear in the first place. That has to count for something. And now with the hearing aids there are times that I think that he hears me and yet other times there is nothing. It doesn’t help that he is such a smarty pants! I am glad that I have his AVT working with him. She has been doing this for so long that her opinion of him not hearing much if anything has to count for something as well. I guess just knowing that once they do the implant, there is no turning back and it makes it that much more difficult to handle. Once the implant is done it “ruins” the ear and if it was to NOT work, you can never go back to hearing aids or anything else…sooooo….
I think A’s tummy is a bit sore from having pulled out his tube and having a new one put in. It looks good but he isn’t happy when you move him certain ways. I guess it makes sense though that it wouldn’t feel the greatest. I can never believe how strong my little man is! I would never be able to go through half of what he has gone through!
As most of you know, A is a very happy boy. It isn’t hard at all to make this kid smile and sometimes he is just hilarious. Tonight when daddy got home from work he was doing this new thing with him and A would laugh before daddy’s finger even came down to tickle him. Oh how little it takes to amuse a child…
Every single day A’s personality is starting to shine through. Everyone that knows him has known that he has always been a happy/social butterfly but it is so much more than that now! I cannot get over how smart he is and how he anticipates things before they even happen!
Wow, this kid just amazes me….
Care by parent continued…