Well A went into surgery last night for his tracheostomy about 6:30pm and at 8pm we got word from his ENT that all went wonderful. We were able to see him in the PCCU very shortly after. He is on a lot of medications for sedation however he is NOT sleeping.
Right now he is currently on the ventilator (life support) but is taking some breaths on his own above the machine. They want to keep him very sedated and pretty still for another 24 hours before they even think of weaning him off the meds and the vent.
I have a lot of emotions right now but so far I feel okay with what has gone on. It was a VERY tough decision and I hope that I never ever have to make one like this ever again in my life!!!!
Here is my tough little guy….
Keep the prayers coming….we have a LONG road ahead of us. He has been a very good boy though for mommy so far on her birthday which is the best birthday present EVER!!!!
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 the big day is Monday at 8am for his fundo! I found this out just after I had done my last update. I am still very nervous but I have a lot of confidence in the surgeon that agreed to do it for me. Please everyone say a prayer for A that the procedure goes well!
Today at noon he is having an ng tube put in and then at 2pm we go down for his milk scan to check for delayed gastric emptying. They will be giving him 30mls over 10 minutes and I just hope and pray that he has no delayed emptying at all!!! If he does then they will have to do another procedure while doing the fundo where they make an incision to help the stomach empty faster. However this can then cause dumping syndrome and wouldn’t be a good thing.
Now for some other great news. A is now under care of the complex care team here at this hospital. I struggled with the decision at first because I really have had everything done that I wanted with the team that is on. However they are done in two weeks and then it would be a new team. So this way the complex care team will follow him no matter where in the hospital he is and even after we are released. I feel really lucky to have this option because this team only has so many spaces for kids and they agreed after speaking with me yesterday that they would take him on.
I talked to the main doctor for a good hour and was very impressed with him. I voiced my concerns about how I worry that the plan we have in place won’t happen but he assured me that all would work out the way that it should. It was kind of a difficult conversation because we spoke a lot about if the fundo doesn’t work, about the trach, the vent and then care if he became very ill. He did ask me what I would want done for A if he was really sick but I told him that I can’t answer that because it is something that I would have to be dealing with at the time to know. It is so hard to think of all of these things that the docs are speaking of. Sometimes I feel like A won’t ever be coming home again. I have been loving him every minute of everyday and taking a ton of pictures. I am a worry wart so this doesn’t help matters!
When speaking to this doctor as well he wanted to know what a bad day looked like for me. How I handle things. If I struggle. How dad does. I think he was pretty shocked when I told him that I feel like I have always known that I would have a child with special needs. How I can’t imagine A being any other way. He told me that Ashton sounded like he was very lucky to have me as a mother and how he thought that we were a perfect fit.
Perfect? I totally agree.
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?!?!
Well everyone I am pretty much an emotional basket case right now. My stomach is turning and I feel pretty sick. A’s second birthday is tomorrow so that starts off my emotional side just thinking of it. I am excited that we will be celebrating this birthday with MANY people that mean a lot to me. I am excited that there are going to be many “miracles” celebrating with us. But at the same time his birthday brings back so many memories of what he went through and what he still continues to go through.
Then comes Monday. Surgery day. WOW, I am sitting here in tears just writing this. I am going to be a complete mess for sure on the day. It seems that we have been waiting for so long for this day to come and now it is coming so quick. It is very hard for me because I just think about how one day soon he will be able to hear me. This is HUGE! I get chills just thinking of the day that we will get to say his first “heard” words to him. I will be taking my video camera for sure that day so not to worry, I will share that special moment with all of you.
What an awesome birthday present for A! This coming year is going to be very exciting for A and all of us who love him. I look at him now and how far he has come and can only imagine what my little bubbers is going to accomplish.
My mind just won’t stop going. I really don’t even know how to describe the feeling I have. (You moms that have children with implants know exactly what I am talking about.) I really need to try and relax. Our good friends are coming down today from Windsor with their little guy that was in Mac with A. I know they will help me cope through the day and take my mind off of my worries.
So yesterday Dawn was here (A’s PSW) and she brought him his first birthday present! He got a colouring book, a pad to colour on and some washable crayons. I said of course that is to make mommy cry 🙂 Amazing how little things in life can mean so much coming from a child that many people didn’t have much hope for at one point.
Well off I go for now….I will have TONS of pictures tomorrow night for you all to see!
Well, today was the day that we headed to Sick Kids to meet with the surgeon for A’s cochlear implant. And they said YES they are doing it! And the best news ever, it is on June 11th! Yes, you are reading the date right, June 11th! I can hardly believe it! I was not expecting that at all because I was told it was usually six weeks after this appointment at least. So my nerves are already in high gear! LOL I thought I would have time to get used to the idea of him having this surgery but I don’t get much now!
So in the next two weeks I will post a bit more about the cochlear implant, how it works, the surgery and so on. I have already come to the realization that people just don’t understand it which is to be expected. People think that A will get the implant and hear and then talk. But that isn’t the case at all.
As Dr.Papsin said today, there is a scale that they use from -14 to 14. They know that kids who score above 7 will do very well with the implant. A is not in this range. With children that have special needs it is really hard for them to say how he will do with it. However we do know that with him having cerebral palsy and being delayed that he is not going to start speaking sentences. We know language is going to be very difficult for him to learn. We know there is still a long process ahead of us, but it will be well worth it!
Basically the way that I look at it is this. When he starts to turn to his name I will be in the clouds. When he understands simple things like “where is the dog?” I will be in the clouds. When he is asked where the blue ball is and looks I will be in the clouds. And IF he ever does say a word, well I guarantee that you will all know that day!!!! Well I guess you will probably know that day if any of these things happen! LOL I am just looking forward to opening up a different part of the world for him. It will be so nice to have him learn to understand things and for him to hear the world how we all do.
A sleeping waiting for Dr.Papsin….it was a LONG wait. Our appointment was at 11am but we didn’t see him until about 1:15pm.
Yay, finally in the room!
So on another note, I am happy to say that little Luke is still with us. His mom and a friend created this little video of him in his hospital room. Luke is OBSESSED with Finding Nemo so they decorated his room for him….yes, you will need the kleenex for this video.