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?
I sit here at home and cannot stop thinking of you. I feel so empty and lost. I am so scared of what your future holds. I am so scared of not having your smiling face here. I am so scared of not being able to hold you. Cuddle you. Kiss you. Tell you I love you and have you smile at me. I am so scared that I will not be able to go on in life.
I have basically cried all day. I look at your crib and cannot imagine you not being in it. I can’t do anything here without thinking of you. Of thinking how life would be. This totally sucks! I just wish so bad that I could take away your pain, your struggles and your problems. I wish that I could wave a wand to fix it. I can’t do that though. All I can do is be the best mommy that I can be. And I truly hope that you know that everyday I do the best that I can for you.
I know you know how much you are loved. That is why you are such a happy guy! You have completed my life in a way that you will never imagine! You bring so much joy and happiness. Daddy and I couldn’t have a better son! And Daddy and I can’t wait to get you home and spoil you even more than you are!!! I can’t wait to have our days together here instead of the hospital. I know you will be better off here.
You know, when you left the NICU I thought that we were past any real problems. You have done SO well in the two years home. Now this happened and I realize that problems aren’t gone. That fear deep within just feels more real.
It is just so hard to look at you and know that what you deal with could possibly end your life. You are so happy, so loving, so fun and so full of life. You are amazing!!! You came out fighting and haven’t stopped.
I just hope you know how much I love you. You are my little man and you always will be!!!! I love you sweet boy…
After set up for the sleep study…
I love how curious he is now!
Cuddles with Vickie…
February 25th with NPT tube…
Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.
So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.
Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.
Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.
There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.
Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.
Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.
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.
Well we had a pretty rough night here last night. The nurse came on shift and A was dropping his heart rate consistently. During sleep his heart rate is usually about 90 and for the past couple of days has been 70s. Even when awake it has been low. I am concerned because I know that it isn’t his norm. Anyhow, the monitor kept ringing that his heart rate was irregular and he kept on having PVCs (premature ventricular contractions.) The nurse came over and said that she was going to listen to him because it probably wasn’t reading right. I told her he was sound asleep and this was NEW. She told me that didn’t mean anything. I then looked at her and told her not to pull attitude with me already because I wasn’t going to put up with it and that he has been on a monitor long enough for me to know something was off. I left crying my eyes out. When I went back up about a half hour later he was still sleeping and she had paged four different docs because she was worried. One came in right then and A started dropping his heart rate to the 40s and 50s over and over. It was ringing irregular again and I was standing at the end of his crying. I was very scared and didn’t know what was going on. I got even more scared when they did a stat call for the IV team. The doctor was worried that something might happen and she wanted an IV ready. I had to leave for the IV and when I came back they were hooking him up to the ecg machine. Of course by this time he is screaming and wide awake. His bloodwork came back with CO2 levels of 76 so they ordered some more. It had to be done twice as the first one clotted. I felt like the biggest piece of shit for what he was going through. I just don’t know how much one kid can take!
Today he had a few more episodes where he is real weird acting and screaming and crying. The pain doctor came in and thinks he may be having withdrawals from the morphine since it was stopped so suddenly. He said that it wouldn’t cause his heart rate issues but thought maybe his screaming and blue spells could be. After talking to the complex care team he disagreed on the amount so we are starting with lower doses every four hours.
I just feel so helpless and frustrated. I wish that A could tell me what was wrong. It totally sucks being a mom and not being able to help your child.
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.
First I want to say thank you to everyone that has been sending their thought and prayers A’s way. It really means a lot to me to have so many wonderful people supporting us and pulling for him.
I should also add here that I don’t think I was very clear about everything yesterday. Besides the spell that he had (which we don’t know if they are seizures or not) A has been very congested and having difficulty breathing. He is being treated for aspiration because of what happened Sunday night. With the chest x-ray looking fine it is hard to know what is happening. Today I was wondering about RSV but I was not about to take him to the hospital just to do a swab when he is NOT in any shape to go out.
So it was a pretty long night around here last night. I pushed our loveseat up against our couch so that I could sleep beside A all night. Or I guess I should say so that I could lay beside him all night! Anyways, he was doing okay off and on until about 2:30am. He was very irritable which in turn causes many more dystonic movements. At 3am I decided to give him a dose of versed. I have given him two doses before here at home about a year ago when he was sleeping like crap. I know back then that the effect was very quick but did not last very long at all. I was hoping last night that it would just take the edge off of him enough that he could get some rest.
Well within five minutes I could tell by his eyes that it was starting to affect him. Then came the frothing at the mouth and then the blueness to his lips. I turned on the light and grabbed the suction machine to start with that. I was getting a TON of junk out of him. I then cranked up his oxygen to five litres and let him try to get some colour before going in to suction again. The colour wasn’t happening. I went in and woke J up because I was so scared about what was happening. He immediately came out and we decided to suction again. Throughout this he was not fighting me at all and more or less was acting as if the suction didn’t bother him. Anyone knows that this isn’t normal and therefore had me even more scared. I really started to panic because I noticed that even his fingers and toes were blue. J went over to the oxygen and noticed that the end wasn’t even hooked up and must have gotten knocked off when he came out of our room. Within a couple of seconds A was getting pink again. For about the following hour his breathing was very off and he just was acting strange. The only thing that I could think was that it had to do with the versed. I won’t be giving him that stuff anymore! I have to tell you that at one point J and I really thought it was the end. It was almost as if A’s body was giving in. Really weird and I can’t explain it well but it was as if life was suddenly in slow motion.
I picked him up and just started to cry. I am so angry that he has to go through this. I am so angry that he is doing this but yet there is no one that will help figure out what is going on. I am so angry that I even have to deal with it. It breaks my heart to know that he is hurting and suffering and there is nothing that I can do to make him better. It just plain sucks.
The rest of the night I pretty much just watched him sleep and breath. Grandma was here early this morning so that I could get some rest. He was pretty restless all day for her and didn’t sleep much. It is so hard to see him sick because he is such a different little boy.
A went to sleep at about 7pm and woke up about 10:30pm. I did a little bit of chest physio and then suctioned before doing his breathing treatment. I got a little smile out of him when I was tickling him which was nice! I got him ready for bed and then put him in his chair for a bit.
He is still very stuffy and congested sounding but looking a tad on the normal side. I tried to shut off his oxygen a couple of times today but he isn’t taking that. The nurse from the oxygen company was here today and she had him hooked up for a while to do the trend she needs. Turns out the hospital didn’t do a printout that we need for coverage of the oxygen so she asked if I could turn it off. The trend they need to cover the oxygen has to be with the child satting below 88. For the five minutes that A was turned off he was around 80-84 coming up above 90 maybe once a minute. Bad news, obviously something is going on that he needs oxygen. Good news, we now will have oxygen coverage for a year.
Are you ready for this?!?!?! I don’t know why suddenly he is like this but I am not complaining!!!
As for the versed, I had a NICU nurse from my preemie group send me this link HERE….makes me really wonder if the whole ordeal last night was from this medication?!
***I have figured out how to load my video onto my computer but now I cannot find anywhere to upload it so that I can send it to those who would like to give me their opinion. Once I figure that out then I will be sending it out.***