Just Another Day…
Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.
We Are On Call For PICU
Well, as I sit here and write this post so much goes through my head. We headed to the hospital yesterday to see A’s respirologist. As I have said in previous posts, I truly wish we had met this man sooner. He is amazing in every single way and really knows his stuff. And he is the ONLY doctor that has taken what A does VERY VERY seriously and is very confused as to why his issues have not already been dealt with.
So, as it sits right now we are waiting for “the call”. A is going to be admitted to the PICU for a period of time and will not be able to come home until he has some sort of ventilation.
His issues at night have continued and this use of oxygen has been very concerning to me as this is not something that he *needed* in the past. Yes, he has always had issues with desats, but not like it has been lately. I have been saying that I feel like he is going downhill and that is the same thing that his resp. doctor thinks. He told me that kids with issues that A has get worse, not better.
So the plan is going to be to try to get A used to wearing Bi-PAP at night while he sleeps. “Bi-level Positive Airway Pressure; Used to treat sleep apnea, and other sleep related breathing disorders; Delivers alternating levels of inspiratory pressure (IPAP), or higher pressure, to keep the airway open as a patient breathes in, and the expiratory pressure (EPAP) is lower to reduce the work of exhaling; the BiPAP can be set to drop the level at specific intervals, or upon demand.”
Children usually take some time to get used to this, so depending on how well A does with it will depend on the length of our stay. The good thing is that he has not had his soother since he was ill in October. This would definitely be an issue as the Bi-PAP mask goes around his nose and over his head. And with him only taking his soother upside down and sleeping on his belly, it would have been next to impossible.
The other added bonus is that he really really wants to sleep on his back now, however I have not been able to allow him as his saturations are always lower and he just doesn’t breathe well. Bi-PAP will be MUCH easier if he is sleeping on his back.
*IF* the Bi-PAP does not work then we will have to talk deeper about a tracheostomy. When he mentioned it to me yesterday I said that I didn’t know if I could do a trach to A. His exact words were “well here is the question to answer it for you. Do you want your son to live or die?” I started to cry. Of course I want A to live, but a trach is a HUGE deal. It is a major surgery. It would change his life completely and ours. It is not something I take lightly.
Now with all that has been going on, he is very concerned about A having issues with his heart because of how much harder it has to work for him with all of his breathing issues. So they will doing another echo to check on things. One of the big issues that can happen with severe sleep apnea and the apnea that A has daily is right heart failure.
Another thing that was talked about was these big “spells” that A has. He thinks that they *could* be sudden pulmonary hypertension spells where the vessels all clamp down which cause him to go very blue and not breathe. I sit here wondering why on earth no other doctor has even suggested this could be the problem????
So it looks like we are in for another hospital stay. I feel more comfort in the fact that this is being done in the ICU but I am still very scared of what the future holds yet again.
The other issue that we have to deal with is A’s night feeds. His respirologist wants him off night feeds, no ifs ands or buts. This is proving to be VERY difficult and for now I just can’t make it happen. I didn’t do a feed last night but today just did not work out to give him more feed. He was refluxing like crazy with his second feed and that was only at noon. I will be lowering the night feed by 10mls/hour but that is the best I can do for now.
A’s x-ray from our last appointment did show that he does have interstitial lung disease. I specifically asked A’s chest team at Sick Kids *if* he could have this and they said no. Yet again, another question in my mind.
This is day two of no beds being available. I just pray that we get one soon because I am so afraid that my little man is going to be spending Christmas in the PICU.
Our Interesting Life Continued…
So the issues with A continue as usual at this household. We are having problems with feeding and sleeping and of course along with that comes the awful desats that go on ALL night.
For about the past week the nurses have had to use oxygen at some point with A during the night. I didn’t really think much of it because they have to administer oxygen if his saturations go below 90 for greater than two minutes. Well anyone who knows A knows that this happens A LOT. Anyhow, two nights ago, Friday night was HORRID. It brought me right back to the days when we brought A home from the NICU. I would never want to relive those days, and honestly sometimes I wonder how I even did survive back then.
When I put A down on Friday night and hooked him up to his monitor, he was sitting about mid 70s. He was sound asleep. I tipped his head back a little and he came and hovered around 84. This is NOT good enough. For about twenty minutes I just stood there watching him wondering what the heck was going on. I still don’t know what to think.
I came downstairs and grabbed some nasal prongs, tape and an oxygen tank. Once I got up to his room he went to 91 and stayed there. This is still not really good enough for me because it isn’t the norm when he is sound asleep.
Basically from 1am until 5:30am I was in there about every five minutes to place oxygen in front of his face or to try and move him to a position where his oxygen saturations would be better.
Feeds. I am having so much trouble getting the required amount into
him in a 24 hour period. I really wish sometimes that we didn’t need food to survive! As you all know, he has been off of blended food since getting sick in October and gaining weight. I talked to his dietician on Thursday again and she said to maybe try adding just avocados in with the formula to make it a little thicker and maybe that would help go down easier. Well within thirty seconds of receiving only 30mls of food he threw up. He was gagging constantly and I had to pull all of the food back out of his tummy. This is very strange as well because he had avocado every single day in his blend of food.
So in the day time I have to give him a total of 750mls and at night he gets 500mls. This just does not work! I am so afraid that he is aspirating which in turn is causing his lungs to get worse-which we really CANNOT let happen. This would explain the crappy oxygen saturations. Thankfully we are seeing his respirologist in a weeks time and hopefully he will have some insight into what we should do. I know he did speak last time about admitting A into ICU for a couple of days to trial CPAP and BI PAP but I just didn’t think that would work because A has a soother. However he has not had his soother now in about six weeks! Something really needs to be done though because he cannot go on the way he has been.
A weighed in at 27.6lbs last night. Seems like he has stabalized there for a bit so that is good. Much better than 25lbs!
We just got home today from getting his second dose of the H1N1 vaccine. So the continuation of our hibernating will happen for about three more weeks. And even then we have to be careful as he has not had his regular season flu shot! Ugh neverending worry I’ll tell you!
On our way out of the mall where his doctor is we stopped at the one store. I was looking at the Toronto Maple Leaf stuff and a lady was trying to get around me and A. Once she got down the aisle she wanted she turned to me and asked me if I was his mom. I said yes. She held her hands to her chest and with tears in her eyes told me that she admired me. I said thank you. She told me she thought he was a gorgeous boy-ha we all know that!-I again said thank you. And she told me, no thank you for doing what you do. To give him life. I told her he gave himself life. He fought to be here. She gave me a hug and again said she admired me. I said thank you again and told her that it is nice to hear such kind comments from people. Totally made my day. It is not too often that a complete stranger says anything like this to you. Why can’t the world have more people like her in it???
He Gained What?
So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about 
two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be 
two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
Almost At My Breaking Point
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.
Fundo Is Complete!
Just a short update. Well the surgery is complete!! I am so happy to be past the worrying of how the surgery would go. I want to say first that the delayed emptying scan that he had prior to the surgery showed that he actually had faster than usual motility so this was a great thing for me to want to try out the g tube!
Well 8am A went into the OR. I was strong up until the point that we had to say goodbye and he had a huge pout on his face. The tears started and I just felt so guilty for doing the fundo when it is something I have fought for so long. The surgery was 4 hours long and we had the top surgeon and top anethicist in with him. Grandma and grandpa S came down on Sunday and grandma and grandpa C came down just as he was taken in to surgery.
Things went awesome with NO complications. They were able to do it by lap which was great for him! Once in there they realized that A had a hiatal hernia that was pretty large so they put a few stitches in the duodenum to fix it up. They also took out his gj tube and placed a g tube.
In recovery of course we had issues with his oxygen sats. He ended up having the ICU team and the critical care team come in to see him. Every time that he was touched or he moved he dropped down to the 30s. He was on 100% oxygen and satting about 94. He was then moved up to the constant care room after the docs said that he would be better off there at that point than in the ICU. He stayed at 100% with many, many desats to the 30s and 40s. I was frustrated and so tired that I was getting irritable with the nursing and doctors. I really wanted him to go back up to the floor that he has been on the past month but they said that he had to be on the surgical floor.
At about 9pm last night I finally had them up his morphine and he seeemed to settle right down. The RT was also called in and she hooked him up to the high flow at 60% where he stayed at all night last night. The nurse that was on last night was wonderful and the ICU docs told her that she had to be right there the minute that he rang. So J, his parents and I went for dinner and then got a good nights sleep at the hotel.
This morning his mom and I came over about 7:45am and I was livid when I walked in the room! He was under his blanket completely, crying, oxygen off his face and off colour. The sat however was saying 91 but then I realized that it wasn’t even on him! I told the nurse that I had a problem with all of this once I found out WHO his nurse was and she has been great since. It is absolutely insane that he is in constant care and yet things like this happen. And then they wonder why parents have to stay and not leave?!
They have been able to wean A down to 40% oxygen with sats about 96. He is definitely more alert today and not in so much pain. I am hoping to get the oxygen requirements down more by tonight. They are going to be starting to run clear fluids through his g tube any time now and see how he does. I am so nervous about this whole g tube thing!
Anyways, I am happy things are over with and I just hope that things improve within the next few days. Thanks for all the thoughts!!!
My Friday Update
Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.
Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.
The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.
As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.
I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!
No More Oxygen & More Progress With Appointments!
Today we had our follow up with A’s paediatrician. Oxygen is now off but we will be able to keep it here at the house for a year now which will be nice in case he gets sick and needs it. We talked a bit more about A’s spell being seizures and he seemed okay with me not agreeing that this is what is happening. But like he said, it has to be neurological, cardiac (which we don’t believe it is), airway related or reflux. Now we do know that A does have neurological issues and reflux. I have myself ALWAYS believed that he has some airway issues happening but it has never been investigated to my standard.
His ped was doing a referral for A as well to London Children’s Hospital for a gj button! I hope that things get going with this too because I would love to see how A would handle small g tube feeds. Even if I have to do j feeds during the night to get most of his calories into him it would be awesome to get to the point where we could do some bolus g tube feeds.
Sick Kids called AGAIN today. Yes, it is crazy how for some reason everything is coming together but lets all keep our fingers crossed that we continue this way! They were just calling to let me know that the referral for ENT was done and specifically for Dr. Papsin which is exactly who I want!
The other team at Sick Kids called yesterday to let me know that the feeding study was being arranged as well as the sleep study. I can hardly believe it!
I put up our Christmas tree on Tuesday night so here are some pictures from then until tonight!
Happy Birthday Aunt K!
A big happy birthday wish to Aunt K! We all love you, miss you and wish that you lived MUCH closer! Maybe one day A will be able to talk you into it! hahaha
So my little man is sick. The last two nights have been ROUGH to say the least. He has a pretty bad cold and today started with the fever. His cough is not sounding very nice either and he is just plain grumpy. I feel so helpless because there is nothing I can do to help make him better. It doesn’t help that he cannot have any meds to help with the stuffed nose, coughing and sneezing because he cannot have decongestants.
Yesterday we were at McMaster for his GI appointment. I had still never heard from the respirologist last week and yesterday I was hoping for a plan. Well actually that WAS the whole idea of seeing respirology and then GI. But as is no surprise the two had not even discussed A yet. Ugh.
So I had asked about possibly getting a g tube placed to try it out with A. Sure was the answer with the added “you are taking a risk….” Why is it that I always feel like I get stuck in a decision because no one wants to back me with it?! “Why do you want a g tube?” That was the next question. Well for starters, the gj tube was supposed to be temporary and it has been 20 months. Secondly the kid never feels hunger because he is fed 16 hours a day. He wouldn’t even know what hunger was if we were to stop feeding him. With a g tube I hope to get down to feeds every four hours or so and then work on oral feeds. It is kind of hard to get a kid to eat orally when he isn’t hungry. Maybe hunger is going to be the key to helping him do oral feeds. We all know that he was a good feeder before the tube so why not again?
Now I know that the gj tube was done because he was admitted into the PICU with life threatening events most likely due to reflux, BUT he has still has those spells with the gj. To me I feel that if we go to the g tube and he starts with the spells, then at least I can say that I tried and I will know that it isn’t possible. However without trying we will never know.
So now the plan is that the respirologist will call me in the next couple of weeks and we will see where to go from there. His GI told me to ask for the next available appointment to come back. LOL Well that wasn’t until March! I am not waiting until March to discuss things further.
On our way out we stopped at the NICU and got to see A’s primary nurse Danielle.
Last night was the first Leaf game so daddy and A cuddled and watched the game. Well some of it…
On a final note for today, I did hear from the doctor in London the other day about A’s MRI. A has mild PVL with a lot of white matter around the ventricles in his brain. English you ask? I’ll dedicate my next post to that!
He Makes Us Believe.... 