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.