Well we are fianlly moved back up to the floor that I wanted to be on. We got sent up yesterday and I am much more at ease. Uncle S and Aunty A came up yesterday for a visit and we headed out to the mall for a couple of hours to give me a break. I feel like I can’t even keep my thoughts straight lately, even think straight. We are going on week five and I am just tired of being here. I am tired of not getting answers. I am tired of fighting and fighting.
Yesterday A had three of his little episodes where he screams and is VERY upset. He drops his oxygen and NOTHING consoles or comforts him. They all last at least thirty minutes and they are really frustrating because I just don’t know what is going on. I have noticed that about three of them start about thirty minutes before his feed is supposed to start so I am beginning to wonder along with a couple of docs if he is doing it because he is hungry. I just don’t know. I can’t imagine getting that upset with being hungry, but it is a new sensation to him so who knows. I have been keeping track of them all so I can try and figure out what is happening. Now I know monitors get kind of out of whack when oxygen sats are very low but yesterday at 2:30pm when he had his second episode the monitor said 8. This is just beyond insane.
Today he has already had two episodes and it is only 1:30pm. The first one started at about 8:15am and lasted until 9:10am and the second was at 11:55am until about 12:20pm. The complex care team was in for the last one and they really have no idea either. I was kind of put back though when they said that they weren’t really concerned about his colour change during these episodes because he is crying. Because I sure have a problem with them considering that in two years of being home I have never ONCE seen A as upset as he is during these times.
A continues on morphine and is slowly starting to wean this afternoon. It will take a couple of days to do it properly so he does not suffer any sort of withdrawals again.
I just want answers.
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.
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!!!
Well we are home from Toronto Sick Kids. We got in late last night (about 11pm). So I guess I will start at the beginning….
A the morning of surgery at home. He doesn’t look too impressed to be woken up at 5am!
We headed out of here at 6:30am on Monday morning so we could be at the hospital for 9am. Well, that didn’t work quite as planned. As we came up to the 401 we noticed that the traffic was backed up ALREADY. So we just kept going straight to get down to the 403 to try that way. We did okay for a while and then the traffic was stop and go. I was having some major stomach issues during the drive because of my nerves and the traffic did not help at all. We didn’t get to there until about 9:45am. I was all panicked that they would cancel his surgery and so on because we were late.
A and daddy in the first waiting room waiting for the nurse to come and prep him for surgery!
Grandma and A…
I was very impressed with how well I did throughout the whole morning. I thought for sure that I would be a mess but I held up! My stomach issues continued until late Monday night when everything was over with.
Mommy and daddy getting him changed into his gown for surgery…
Look at my smiley little guy before surgery! (If he only knew what was coming!)
After seeing the nurse and having his vital signs and oxygen sat taken we were told to go back into the waiting room and we would be called downstairs shortly.
Now waiting to be called down for surgery!
Excited mommy and daddy…(grandma got a GREAT picture of the three of us together…I will post it when I get it here!)
Finally we were taken downstairs. WOW, I felt so good at this point. We talked to the anethicist and the nurse that would be with him in the OR during surgery. Dr.Papsin also came out to talk to us briefly. I think having such an amazing surgeon put me more at ease with the whole ordeal.
In the final waiting room waiting for A to be taken into the OR. (By the way, I did very well holding myself together!)
At about 11:10am A was taken away from us and into the OR. The countdown was on! They told us to expect him out around 2pm.
Grandma, daddy and I went to get some food and to try and take our minds off of the worrying of the surgery. About 1pm we were in the waiting room where daddy and I tried to get a little sleep. That didn’t last very long because Dr.Papsin was out to talk to us just shortly after 2pm.
So the surgery was very difficult for him to do. There was a TON of bleeding and his blood pressure, oxygen sats and heart rate kept dropping. At this point they would have to stop and wait for him to recover which was causing more bleeding. He told us that he believed something was going on with his heart and that there were many opinions happening in the OR. We were a little bothered to hear all of this as it really wasn’t what we had expected. At any rate, Dr.Papsin was able to get the implant in and it was working. (They hook it up to the computer after implanting it and make sure that it works.)
A was vented for the surgery therefore he had a pretty hard time coming off of it as he was on a lot of morphine. We were not able to go into the critical care room until 4pm to see him. He was having problems with his oxygen levels for a while but they had him stable. He was not able to be transferred up to his room in constant care until almost 10pm.
A about nine hours after surgery. Just got out of critical care unit and up to the constant care room.
So the first night was pretty rough for A. Daddy and grandma left about 10:30pm. He was on codeine, tylenol and motrin continuously. I headed down the the surgical waiting room to get some sleep on one of the couches. When you are as tired as I was, ANYTHING is comfortable! I was only able to get about 2 hours of sleep before I was called back up because A was very irritable. He wanted to be held constantly.
The day after surgery…I got a couple of little smiles from him.
The doctors came in on Tuesday very early to check on his incision site. There was more bleeding going on than usual still and they had to keep a close eye on it. The bandage had to be changed four times during that night and normally it isn’t changed at all. Later on that day they took out the drainage tube that was in behind his ear.
Tuesday night was also a long night. He was once again very irritable and still receiving all of the meds. The nurses said that normally children who receive the implant do not even want pain meds, but with A they kind of expected all of what was happening to happen.
I headed down once again to get some sleep and had about four hours. I felt like a zombie yesterday walking around.
Dr.Papsin also told me that day that A is a tough little guy and that is why he was there. Made me feel good. He was happy with the way that things were looking around the site but just wanted to wait for A to go home because he wasn’t himself.
A yesterday sitting in his chair. It was his first time being out of bed and he wasn’t really himself this morning still.
Grandpa stopped by for a bit to visit. It was nice having someone there as I had been by myself since the night of surgery when daddy and grandma left.
I also had cardiology come in to see A yesterday. Dr.Papsin had arranged this after some fussing on my part because of his blue spells and what he was doing during surgery.
At first they said they couldn’t overstep Mac because he was already being seen there. A little while later they came back and said that Mac has discharged A from cardiology. Huh?!? I have been waiting for three months now for a echo to be done. Pre-op was in the beginning of March. They were VERY confused.
However, the cardiologist said that his heart sounded good and that he didn’t think that was the problem. This was a good thing but at the same time still left us with no answers. I asked him what could be causing the issues and he came back and told me that he had just looked at the xray from the 11th and that A’s lungs are awful. He said they are all patchy and that is his problem right there. Once again I am confused because I have been told in the past while that his lungs are fine and there is pretty much no lung disease. Cardiology told me that they think it is from him aspirating and when it is small amounts it causes damage. Ugh, yet another problem now!
Later on in the day…
So early in the afternoon I was still complaining about his blue spells and his sats. They didn’t seem too concerned because he wasn’t really doing his “norm” as he was still on oxygen. I left in tears and when I came back, guess what?!? A had one of his BIG spells, the apparent life threatening events! The docs that were dealing with him and everyone else saw what happened. He has not done one of these since April 4th.
Around dinner time last night…much more himself. Hanging with his koala from Dr.Papsin. This koala has a cochlear implant as well 🙂
So late last night the docs discontinued the oxygen because he isn’t on it at home. A was asleep and satting 98-100 on the oxygen. It was turned off and he went down to 75-85. Turn it on and he would go back up. It was very obvious that it was helping him. However, long story short they STILL sent him home.
I was pretty emotional all the way home. I think it didn’t help that I was WAY over tired. But the great thing is, is that A had a great night. He still has continued to vomit blood but when he did it in the hospital they said it was most likely from the intubation. I will definitely be keeping an eye on this.
A today with no wrap on his head.
Today he has been himself totally. It is great to see this! Grandma was here for a bit and now I am going to try and lay down and have a nap with A!
Oh, this is the best thing about today. Cardiology from Mac called and want to do A’s echo next week. I thought he was discharged?!?!