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.
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???
Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.
Well my little man is sick again. It started last weekend with him not sleeping very well and having a lot of desats. Sunday night we started him on oxygen which seemed to help so I figured he was just needing some extra support. It wasn’t really until Wednesday that he started with the coughing, going off colour a lot more and just not being himself. When he got up that morning he was not looking well at all. Daddy cuddled with him on the couch and when I happened to come in the room after about fifteen minutes and look over at A he just looked BAD. I went upstairs to get his monitor and he had very low sats that would not come above 60. I got the nasal prongs out and put him on oxygen and that really helped him. I called his doctor here in town but they could not see him until yesterday.
Grandma and I took him in for 1pm and A did not want to be there. He was also tired as I had just woke him up before we left. He was going off colour and the doctor did not like what he was seeing. I have to add that this doctor has seen A go off colour MANY times and never ONCE has he been concerned like he was yesterday. I really think that he received a letter from Sick Kids about how we were treated the last time that we were in Guelph emergency.
Anyways, he told me that he wanted me to take A to Toronto or to Hamilton emerg and have him seen there. I started crying of course because I absolutely HATE hospitals and it just was the last thing that I wanted to deal with. It breaks my heart every time that we go there and they have to poke and poke him for IVs. He suffers SO much and there are times where I really just can’t do it to him.
Anyways, we ended up leaving the doctors with a note that I was to give to the emerg doctor telling him about what he saw while we were there. I was very upset because it is always the same old thing when we go. People rush around like mad when they see A’s oxygen sats but as soon as they hear that he has a history of them it is like they don’t give a crap. Very frustrating as a mom but I cannot lie to them as all of these hospitals have record of A.
We came home and I called his team at Toronto Sick Kids. The NP that I deal with did not feel that A was at the point of needing admitting. We had put on his Wonder Pets for him and he was only on half a litre satting 100. He was smiling and just not seeming sick enough for me to want to deal with emerg doctors on a long weekend. After speaking to her I decided that I was just going to keep him home.
We had a nurse on last night and she said that A had a pretty good night. He was restless between 3-6am but other than that he was satting well and sleeping well.
I have had to do some suctioning and for once in my life I am actually getting things up and out of there! Makes it much easier for me to do it knowing that I am helping him.
Today he woke up not so happy and I thought we would be heading into emerg today but once I got him dressed and settled he was fine. We went for a nice long walk and he went down for a nap at 3pm and is still sleeping soundly now at 5:30pm. I have the compressor on with a mask near his face and he has not dipped below 90 once.
I just hope and pray that things get better for him before they get worse. I don’t know why on Earth he keeps getting sick so much this year. It is the crappiest year of my life EVER! He has only been home now for just over three weeks from his last ordeal and I really don’t know if I can handle being in there again so soon. I keep wondering when we are going to catch a break around here and have good things happen?
In other A news, we started speech therapy on Tuesday. He will go every Tuesday for eight weeks to start off. It was interesting but I really do wonder how speech therapy works with a child that is non verbal and very stubborn?! We’ll just have to see how it goes.
These were taken March 25th…I had been feeding him and his extension came undone so the food went everywhere!
Look at what he did with physio last week!!!!! First time EVER!!!!!!!!!
Is he not just amazing?!?!?!?!?!
I have been getting a lot of emails from people all over the Internet asking how I am doing since losing H. It was two weeks ago tonight that I went into labor with him. I can hardly believe that fourteen days have gone by. There are times when I am so heartbroken and just cry and cry. And then there are other times that I just feel like everything wasn’t even real. I just wish I knew WHY it happened.
I have been doing pretty well though I think this past week. I have started a blog for Hunter, more of a diary for me to write my thoughts and feelings. I have always been a big person for writing a journal and I think this has really helped me already in dealing with my grief. It helps to get it out. It is a private blog that only I can get into right now but in time I may open it up to some of you that would really like to read it. Let me know if you are interested.
I have also contacted my social worker that I have dealt with on and off since A came home from the NICU. She will be coming next week to talk. She is a wonderful lady and it really helps me to talk to her. I have not seen her since before our wedding so there are a lot of things to talk about.
I also wanted to say thanks to those moms in my Internet world that have been there for me and talked very openly with me about losing their babies. It always helps to talk to others that have been through it. Makes you understand that you are not the only one. That you are not to blame. You guys know who you are!!!! Huge hugs to all of you!!!
Another thing. People seem to be so afraid of asking me how I am when they see me. Afraid of saying anything really. Do NOT be afraid. I want to talk about H. I want to remember him. When people “ignore” asking me anything I feel like he didn’t matter. I know that is not what people intend at all but it hurts me more to hear nothing than to hear something else.
I don’t want to hear that God wanted it this way. I don’t want to hear that it wasn’t meant to be. I don’t want to hear that God doesn’t give me more than I can handle. I don’t want to hear that he is in a better place. I don’t want to hear that I am young and still have lots of time to have babies. I don’t want to hear that I can always adopt. I don’t want to hear that we are supposed to have an angel. These are all things I have heard yes. And honestly it drives me mad.
Actually, this makes me think of a poem I read on the Internet. Here it is:
Don’t Tell Me
Please don’t tell me you know how I feel, unless you have lost your child too,
Please don’t tell me my broken heart will heal, because that is just not true,
Please don’t tell me my son is in a better place, though it is true, I want him here with me,
Please don’t tell me someday I’ll see his face, beyond today I cannot see,
Please don’t tell me it is time to move on, because I will never be there same,
Please don’t tell me to face the fact he is gone, because denial is something I cannot stop,
Please don’t tell me to be thankful for the time I even had, because I wanted more,
Please don’t tell me when I am my old self you will be glad, I’ll never be as I was before,
What you can tell me is you will be here for me, that you will listen when I talk of my child,
You can share with me my thoughts, you can even cry with me for a while,
And please don’t hesitate to say his name, because it is something I long to hear everyday,
Friend please realize that I will never be the same, but if you stand by me, you may like the new person I become someday.
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 A has been holding his own all week and we never did end up getting admitted!!! This is great because I think he does much better here at home and I know that I definitely do too! It totally stresses me out being inpatient and it isn’t something that I wanted to deal with right now.
He is still requiring oxygen or his saturations stay in the high 70s or low 80s. He is also needing a lot of suctioning yesterday and today. Now any mom that does this knows that it just isn’t fun to do. I have a really hard time because I know how painful it is and it isn’t anything that I would want done to me. When A was a baby and first came home from the NICU I had a much easier time with it. Now that he is bigger it breaks my heart. As soon as he sees the long catheter he starts getting upset. But without the suctioning here at home there is probably no way that he would be able to be here at home.
Not too sure what is going on exactly with him but it started last night after he went down for bed. I finally got to bed at 1am and then the alarming started. J was still up so he kept going up to check on him. Eventually at 3am A was having a hard time keeping his oxygen saturations above 70 so he got me. I was a bit nervous as he was just having such a hard time breathing. I had said we should probably take him to the ER but we all know that it just doesn’t seem to ever work for A. I mean how much faith can you have when at our last admission with “pneumonia” and over twenty pokes for blood and an IV the next day we are told by HIS doctor that he doesn’t have pneumonia. Then the radiologist read his x-ray and said possible. Just crazy.
So I went to our basement and pulled out the oxygen. At 1L he was staying in the 90s as long as he was relaxed and/or sleeping.
Today he hasn’t been much better but holding his own. I will see how tonight goes and then take him to his doctor tomorrow if things are not any better. Please pray that this doesn’t turn out to be a hospital stay!
Sorry I have not updated since last week. Well Tuesday morning daddy and I got to the hospital at 8am. A was sitting up in his wheelchair watching TV. He looked good but then I noticed he didn’t have an IV!!!! The nurse told me it had come out during the night. UGH I was SOOOO mad!
His ped came in about 8:30am and told me that he refused to poke A for the 18th time. I asked him to look at the xray from in emerg so he did so. Told me he did NOT see pneumonia. WHAT!? My little man got 17 pokes for nothing??? So he took me to show me all of his xrays. I of course cannot tell pneumonia but it was interesting. So I then asked what the radiologist said. He said “possible” pneumonia. Okay so I have one saying yes, definite pneumonia, one saying no and one saying possible. Am I the only one that is confused on how this happens???
Anyways I was a bit frustrated that he put A on oral meds and said we could go home. So he told us to wait the day then and see how he was around 5pm when he would call. Okay fine. Grandma came up and daddy and left for a while.
At 3:30pm I returned and my mom said he had a pretty good day. He was acting tired so we figured we would try him down for a nap since we still had a while to wait for the doctor. Well that is when he started his blue episodes. It was about 20 minutes with sats below 60. The nurse on went and called the doctor. He told her that he was not doing any further investigations. UGH!!!! You could tell something was wrong because everytime that A got upset his heartrate would fly up. The doc told her that if he did it again before 5pm then he couldn’t go home. I was just so frustrated and pissed off that I packed him up and we headed home.
Monday night A is sitting with daddy on the couch. He starts to get upset and goes off colour. Well all of a sudden he cries like something REALLY hurts, goes straight stiff and boom he isn’t breathing. When he finally did take a big breath he passed out. J laid him on the floor about ten minutes later and he didn’t move. ANYONE that knows A knows that for one he doesn’t go to sleep on you like that and two if you move him he wakes up.
Well at 11pm I went to give him his med and he woke up. So we took him up to bed. What does he do?? The same thing!!!!! Except this time when he started breathing he didn’t pass out, he just continued to fuss and cry.
Tuesday morning I was livid to say the least. I immediately emailed his team at Sick Kids about what went on and called his doctor here. I was bawling my eyes out when I called the doctor and told the secretary what went on. She said she would call me back. When she did she said that he wanted to see A the next day to discuss home oxygen. WHAT!?!? That is NOT the answer. And we already have home oxygen!!!!
The nurse practitioner called me from Sick Kids. Said that she talked to his doctor and he wanted to see A in clinic next Tuesday. HUH? I am telling you my child stopped breathing TWICE last night and you want to see him next week??? I told her that wasn’t good enough. That I wanted something done NOW. She said she would go talk to him and call me back. When she did, she said that is the best they could do. She also told me that if things were that bad last night I would have called 911. Really?! For what?! To go through the same drama and have nothing come out of it?? I called 911 when he wasn’t breathing and it was like I was on a soap opera and we were sent home that SAME day with NO answers and NOTHING fixed.
By this point I am really really angry. I decided with the support and advice of a group of moms that I talk to, to take things further. I talk to A LOT of moms that have kids with all kinds of issues and all agreed and cannot believe that nothing is done. One mom even told me that if her son had sats as low as A she would expect a helicopter to land at her house.
I had another mom tell me that she thinks that the doctors don’t do anything because A is disabled and it doesn’t matter. (The low oxygen levels). Sadly I agree. If A was not disabled and he was doing what he was doing the doctors would not let it go on without investigating WHY it was happening.
I sat here Monday night after all this and wondered if I was just a crazy mom who wanted too much from doctors. If I was taking things too far and really they weren’t that serious. But I realized that NO I am not any of these. What A does is NOT okay and I have absolute reason to be worried.
So I took it upon myself to email about four news stations and about eight doctors/hospitals within the United States. I have heard from Global News so we will see where that goes….hopefully somewhere.
I have thought of this for a long time but I was so worried that it might make things here “difficult” or “worse” for A but I realize now that it cannot get any worse for him. No one does anything. These doctors and hospitals are supposed to take care of him. And the care he is receiving is disgusting to say the least and they need to be held accountable for this.
Anyways, that was Wednesday. I heard from Global Friday. A has continued with his blue episodes, however none as bad as Monday night but still not right. I just hope that ONE DAY SOON I find the right person who wants to help my little man. How could you not want to help him???
Wow, it has been a while since I have updated this blog!!! No wonder I have been getting the odd email asking how things are going. Well, things are actually going VERY VERY well!!!! A has still not had any vomiting issues and I don’t think I recall much gagging either. His feeds have changed dramatically since getting the g tube and it seems to have really helped. He was getting feeds every four hours in the day and then nothing from 11pm-9am but now we are on continuous from 10:30pm-8:30am. He then gets a feed from 11am-1pm and 6pm-8pm. And knock on wood this is helping big time! I am slowly going to try to increase the amount to take time off but I am sure going to do whatever works for him.
Things have been totally crazy around here trying to do wedding planning and getting things in order. Time is going so quickly and I am so worried that something isn’t going to get done! I have been hard at work making all of my own invitations and reply cards and WOW is it sure a lot of work! I didn’t realize how much work is put into a wedding until I started planning my own!
Today the pastor came over that will be performing our wedding ceremony and he was great. J and I will start marriage counselling the end of May which will consist of four one hour slots. I had to laugh to myself kind of when this came up because God knows that if we have made it through what we have then we sure will be fine!!! I don’t know how many people that have a child with A’s needs, hospital stays and issues would survive. I actually have to sit back sometimes and realize how proud of ourselves we should be. And to think that after three of the hardest years of our lives we are more in love than we were before A! This wedding is going to be VERY emotional and I am getting so excited for the big day!!!!
Anyhow, back to A. He has also been satting pretty well at night still, above 90 which is okay with me. He still does drop but is not requiring oxygen since the last bit where he did. He however has a new thing that he does which is dropping his heart rate too low. The nurse was here last night and said he did it 27 times. I even know during his nap he does it and I have NO idea why. Most of the times when it happens he is satting at numbers you typically don’t see with him! LOL If it isn’t one thing, it is another with him. I am a bit concerned as I know this is new for him but he does pop right back up so I feel much better with that.
Lately, J and I have been having a hard time dealing with how upset A is getting. Last night was pretty rough because he was SO fussy and all he wants to do is stand up. He loves when you hold him up and he can walk around. His eyes light up and he is SO proud of himself. After long periods of time we need to take a break because he is so heavy and he gets very upset. He just wants to go. I almost started to cry last night because he knows what he wants to do but yet he can’t do it. He is really changing in this way with everything around him. Even toys, he tries SO SO SO hard to get things and when he can’t he gets very upset and frustrated. It is wonderful that he is trying so hard, but it is becoming apparent to J and I just which way things in life are headed for A. As he gets older it is much harder to please him and he just wants to keep on going. Lately I have been walking him for up to two hours a day because he just doesn’t want to do what he used to do. He loves being outside so I do it to make him happy.
On a good note, I received a call the other day from a doctor that I have been waiting to see since last August. He is an eye doctor and he is supposed to be VERY good at what he does. They actually have two weeks out of the year where families from all over the world bring their children to see him. He has students that interact with the kids and then after an hour of observation he is supposed to be able to tell you what they see, how they see it and overall what their vision is like. I am very excited because lately I find putting on A’s glasses that he doesn’t want them on. The appointment isn’t until June but it should be interesting!!
Speaking of June. WOW, we are already in May. My little man is going to be THREE next month!!!!!!!!!!!!!!!!!!! YIKES, where does the time go?!?
Well first I want to start this post off by saying that A has been wonderful since Saturday evening!!!!! He went for a nap on Saturday and when he woke up it was like he was back to himself!!! I didn’t even realize until about 10pm that he was not whining, not crying, not fussing! I can’t really say WHY things happened like this but I am sure not complaining.
I think it may have to do with me lowering his calories and doing the 10-8am feed and slow feeds in the day. He was always on 30cal/oz and I put him up to 37cal/oz when we came home. However I did talk to a few other moms that said their kids took a while to get up that high so I went down to 33cal/oz. The only thing that stinks is that he is on feeds throughout the entire night but I guess we have to do what works for him best!
Since Saturday night he has also not required oxygen at all and sits above 93. Of course he still has his ton of desats but at least he isn’t requiring the oxygen to stay above 90. I can’t explain this either but it is great. I had put him to bed Saturday night with the nasal prongs on, hooked him up to the monitor (no oxygen on yet) and he was at 97. I decided to leave him off the oxygen for a bit and for almost an hour he didn’t drop below 88 so I left him off it. And it has been that way since.
I do think there are going to be times that he requires oxygen but I am just so happy that it isn’t something that he needs every single night.
Physio and OT came on Monday and he did great. I really wasn’t thinking that it would work out anymore because of how he has been but it was nice to see him doing things that I haven’t seen him do in a while. He has been put on the waiting list for the seating clinic so that we can work with them to get him into a wheelchair probably within the next year.
It is so nice to see my little man back to the way I remember him. It has been a while. He isn’t without the gagging, odd vomit or blue spell but he is HAPPY and that is what matters to me the most!!!
Now for some long overdue pics of my little man!!
Well I got the results of the sleep study today. It sure doesn’t make anything more clear or easy! So basically it shows that A has high CO2 levels like I said before. However after I left I guess his CO2 stabled out at about 56. Still a bit higher than usual but much better than 80. They tried a few more times to shut off his .5L of oxygen but then he would desat so they would have to turn it back on. They then tried him at higher amounts like 1L and 2L. This would then increase his CO2 even higher. What does this mean? Well it means that oxygen is not a good thing for A. However at .5L it is okay…just no more than that. Oxygen at higher levels than this becomes toxic to him basically. This also explains why he doesn’t do well with sedation of any sort.
This also tells them that A is requiring a higher CO2 level than normal to have the drive to breathe. They think that over time his baseline of say 45 for CO2 has risen. So all in all he needs the hypoxia to make him breathe. Confusing? Yes! But as we all know, A has NEVER been easy!!!
As well as this, the sleep study showed significant obstruction. Where exactly? Well we are not sure. They are thinking that he is pooling his secretions in his airway and some of this is going into his lungs…micro aspirations. On the video, you can see him moving around and then it is like once they are clear he goes back to sleep. What can be done for this? Nothing really. There is no way to really stop the aspiration of his saliva. Over time can this cause harm? Yes, but it is hard to say how long or when things would get worse.
They also believe there is some floppiness to his airway when he is in deep sleep. Not surprising to them considering he is an ex preemie who has cerebral palsy.
So all in all it gives at least some idea to what is happening, but frustrating because there is nothing we can do for either as a fix. I did ask why the pooling seems to have gotten worse since the fundo. That is if they think the desats during the day are related to this. They don’t have the answer, so I am hoping that maybe his surgeon can provide some input on this when we meet up next week.
I saw ENT again today and he is very concerned about Ashton hitting single digit numbers for his oxygen. He did bring up the trach again but I refuse to talk about this until we have the team meeting.
So that is about it for now….
Well after my last post I ended up meeting with the chest doctor that I had been wanting to see along with one of his collegues and my complex care doctor. I also asked the charge nurse to come with me because she was with A the other day when he had a desat of 11. To be honest the meeting didn’t really help me much but at least now they know how I am feeling and that I am not just going to sit here day after day with no answers. I asked the chest team what their thoughts were on ILD but they didn’t feel that right now it was something to look at because his CO2 levels have never really been a huge issue. Add on to that, the only way to diagnose is to do a biopsy.
Later on I went and met with patient rep to discuss my issues and problems. I had ended up calling them when A was in one of his little episodes and I was at my wits end. I cannot keep on going watching him suffer and struggle. I had my social worker come with me and she was able to take notes and help me out a bit. After hearing my story he told me that he thinks that I better put on my seatbelt and hold on for the ride. Never heard it put that way before! He was very wonderful to talk to and I am hoping that his idea is going to help out a bit. The plan that we came up with was for me to write out a list of questions that I have for each doctor that I am dealing with. I did that with my social worker today and we gave him the copy. Tomorrow he will be distributing the list to all of the doctors and then next week we will have a team meeting. He will come along with me and he said that there will be no going around in circles and all of the questions will be answered. The reason for him giving them tomorrow is so that they have time to think about them and put them down in writing for me as well. This way there cannot be any confusion with what is said and what is happening.
So after this I come back upstairs and find out that A is going for a sleep study! Six weeks to the day that we came in for one. So that was done last night and I was really not thinking it would show much. However I stayed down there for the first few hours to watch what was going on. A was sleeping and satting 100% but his CO2 level was between 70-80. The sleep tech then came in and turned off the oxygen to see what would happen since the doctor wanted it done off O2 anyways. Well after a few minutes his sats would drop but so would his CO2. So then the oxygen would go back on and up would come his sats and CO2. Strange. Just automatically made me think to the meeting where they said that they weren’t concerned about his lungs because his CO2 levels have not really been an issue. I have been dying today to find out what it showed but looks like it will be tomorrow. I have to admit that I am kind of scared as to what it will show. I just hope that it will be an answer to all of the issues that we have been having.
A and I had some fun today and went and played bingo with the Toronto firefighters. There was really cool prizes and it was nice to be out of this little room!!!
I am off to go sleep in the playroom now…..fingers crossed this sleep study will give some insight!!
Well I haven’t stopped crying all day. I am so tired. Tired of watching my perfect little man suffer. He had a fit yesterday for 45minutes. The nurses were in there and had him on 100% oxygen and not ONCE did he come above 50 in his sats. At one point on a good tracing it said 7. I can’t go on watching him like this. The doctor was paged but didn’t come for at least an hour AFTER the spell ended and once again told me that A is breath holding. Breath holding my ass! They just suddenly started this past week when he never had them in his life?!??!?!?! I don’t know what else to do for him. I have fought and fought and fought and yet still don’t get the help he needs and deserves. If anyone has ANY thoughts please let me know!
Never in my life have I felt like giving up on this but it has crossed my mind. I just can’t take it anymore! This is supposed to be one of the top five hospitals in the world but yet we aren’t getting anywhere. If I won the lottery tomorrow we would be going to the States.
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.
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 not much to report on here. Just hanging out waiting for everything to fall into place. Weekends don’t include much happening around here.
The only thing new is that for some reason when A goes to sleep now he is satting 70s and needs oxygen. Even at his nap yesterday. It seems very odd and I am not sure what is going on but it is something new for him. I will hopefully be able to talk to the doctor today and see what she thinks about him doing this. Just adds another piece to his big puzzle of his life! The nurse today said that she has never seen a child drop so low and stay there and then other times drop so slow and recover so quick.
I am a bit of a nervous wreck about his scope coming up and his possible removal of his adenoids. My stomach is just turning.
Lastly I want to say thank you to Melissa for coming down to visit A and I the other night. It was great to meet you in person and it means a lot to me that you came to show your support! (We met on the Internet.) And thanks for the big cozy Backyardigans blanket!!!! I used it to nap yesterday. LOL
Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!
Hanging out watching football…
Notice how he is holding BOTH of his socks! Way to go A!
Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.
Mommy in her scrubs and one happy boy!
At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.
The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.
The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!
Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.
When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.
At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL
FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!
We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….
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!
Well things around here are slowly getting back to the norm. A is still on oxygen and we will hopefully be able to get rid of it after seeing the ped on Thursday. I currently have him between a quarter of a litre and half litre. I do wonder though if it is helping his with sleep because everyday for the past three days he is napping for three hours! Normally his naps are only maybe an hour if I’m lucky. He actually went down today at 1:30pm and he is still asleep and it is 4:50pm.
Now for my news of the day! This morning I got a call from cardiology at Mac. They were calling to inform me that they have an opening in the OR for A to have his long awaited echo next week. I was really thrown off with this as his pre-op was in March. Seems kinda funny to me that so much crap has been going on in the past week and they call with this appointment. Anyhow, I was a bit iffy on whether or not I wanted to say “yes” because I really wanted him to be seen at Sick Kids for this. I also don’t like that I was not able to talk to anyone about my concerns of A being put under a general anesthetic. I then told the lady I was speaking to about Sick Kids having a referral waiting for A but the files from Mac have not yet been sent over. It has been about three months since the first day I tried to get them transferred. She told me that she had not been approached with regards to sending all his cardiology reports over to Sick Kids. I however know different as I have spoken to them about four times and the secretary from Sick Kids has also called them twice. Anyways she then informed me that she had no problem sending all the reports over. What?! I wonder about all this….I have decided that I will take A to have his echo done for the main reason that it is going to be a different cardiologist than we have dealt with. I also said that I expect to talk to the doctor afterwards and I want answers.
Anyways next part of my good luck day. I called to speak to the nurse for the pulmonolgist that we saw in October. I wanted to know about the referrals that he said he was doing. She was absolutely wonderful and very helpful. The pulm had talked in length with Dr.Jacobson who was the ped that we saw at Sick Kids a while back. He was very concerned about A and what is happening but since he didn’t believe that it was related to his lungs there wasn’t much more he could do. So Dr. Jacobson took over for the referrals. His nurse however talked to me in length about what has been going on lately and was very caring and sympathetic. Not too often that you find someone like this. (Well for me anyways.) I asked her as well about the RSV shot for A but she did warn me that the pulm would probably be against it as at A’s weight it would be three needles which just isn’t nice. She said he is also getting past the point where they say that RSV would be helpful to him.
After talking to her I phoned the ped that we saw at Sick Kids to find out what was going on with the referral for ENT and the feeding study. Once again I talked to someone that was VERY helpful and caring. The ped wasn’t in but her secretary told me that she would be sure to get her to follow up with me tomorrow. I had also mentioned that I would like to see Dr.Papsin (ENT) as he was the one that did A’s cochlear implant and I really liked him. He also saw what A does when he is having a spell as he was very unstable in the OR during surgery. He had come out afterwards and told me what happened, that there was a team of them in there that were worried and lastly that it would be figured out. Well it never was figured out. When I asked the pulm about doing a specific referral to a certain ENT he said it couldn’t really be done. Well the lady today said that she will see to it that we get in with Dr.Papsin.
SO, maybe just maybe we will finally be getting somewhere!!!!!! I am not getting my hopes up quite yet BUT I am a little more optimistic.
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.***
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 it was a crazy couple of days down in Toronto at Sick Kids. A, daddy and I went down on Wednesday night to save us the drive Thursday morning as A had to be at the hospital for 7am. We got down there about 8:30pm and went and checked in our room and then headed out to get a bite to eat. WOW, I cannot believe how many sketchy people are around down there!
After having dinner at the Golden Griddle we went back to our room to try and get some sleep before having to be up at 5:30am. A didn’t go to sleep until about midnight and I didn’t sleep very well anyways. Strange to be right beside him sleeping!
Thursday morning we headed out at 6am to walk over to Sick Kids. We weren’t sure how far it was exactly, but it only ended up being about ten minutes which was nice. I was very frustrated from the beginning of our stay with Sick Kids. We had taken him down to MRI and then they decided that they needed to do an x-ray to make sure that there was no suture inside his stomach from his tube. I told them that there wasn’t one and they had to be 100% sure just in case as metal cannot go into MRI. This was something that should have been checked before the day of the MRI. Anyhow it all worked out well and he was then hooked up and put to sleep. We were then asked to leave the room so that they could get the IV in and just in case they had to put a tube in.
J and I headed back to the hotel to check out and then grabbed some breakfast before heading back to the hospital. At 11am we were called in and went back to see him in recovery. He looked pretty good considering he had just woken up from an anesthetic. (I was pretty emotional waiting for him to come out of the MRI thinking that the next time we will be there will be for the surgery. I can’t even describe how I feel about it but I know that the day we are there for that there are going to be a lot of tears!)
They had him on six litres of oxygen but it came down to about a litre within an hour. He was then moved up to the constant care room on the fifth floor. The nurses and ENT resident were very concerned about how A drops his oxygen sats and how low he goes. It is starting to really bother me as I know that it isn’t normal and something should be done to figure it out. On the “okay” side of this, the ENT resident did say that because A has always been like this with his sats that they look at him as “chronic” and therefore that is probably why no one is very concerned about looking into it.
Grandma and grandpa came down for a bit to see how things went and to visit with A. J and I went back to the car parked at the hotel to grab A’s bag and stroller.
I decided that because A was in the constant care room that I would go home for the night to get a good sleep. Just before we left A decided to pull out his IV and there was blood EVERYWHERE! I got him cleaned up and then we headed out. My gut was telling me not to go home but I did. When I got home I was pretty upset and felt like such a bad mom.
Yesterday morning, grandpa came to pick me up to head back to Sick Kids to pick A up. We got there at 9:30am and I thought that he would be discharged soon after getting there. However that was a whole other story once we got there. The nurse came over and told us that his feeds were stopped during the night because “it was pouring out of his stoma site”. I said I didn’t believe that as he has had the tube for so long and never once have I seen that happen. She said that the night nurse told her that the bed was soaked from it so they had ordered a GI study to see what was happening. They were just about to start an IV and I said no, that I was starting his feeds up. The doctor came over and said that we could do that and see what happened once it was running. This was 10:30am.
At about 12pm there was no leaking and told my dad that we could leave. On the other hand I was worried now that IF there was a leak we would get home and then have to go to Mac to get it looked after. So I figured since the study was already ordered we might as well wait for it.
At 2:30pm they called us down to radiology. We sat there until 4pm!! Anyhow we went in and the doctor put some dye into his tube and said that it was fine. Then he looked a bit closer and said that there was a tiny leak in the middle of the tube that was in his stomach. He showed me but I told him that I wasn’t worried about it because this was the first tube that A has had that has NOT caused a lot of vomiting issues. Before I could say anything he took the scissors and cut the tube right off! He said he was going to just put a new one in. I was NOT happy! A was very upset as the doctor was not being gentle at all. He was satting in the 40s and they weren’t even worried about giving him a break to settle down. He was screaming at the top of his lungs and I was trying hard not to cry myself. It is VERY hard to watch things like this happen.
When we got out of there and back to the nurse that had come downstairs with us I started crying when she asked how it went. I told her I should have just gone home and not bothered waiting for the study. The other nurse told me that she would get the doctor for me to talk to but I said no, that I just wanted to leave.
We got back upstairs and I calmed down. A was tired and went back to sleep. He was satting between 88-90 which was bothering me. I placed the oxygen in front of his fact and he would go up to 98. Take it away and he would go back down. I think that he needs to go back on oxygen because it is obvious that it is helping him. When he was sleeping earlier in the day ON oxygen he didn’t go below 97. So I will calling a few doctors next week to see what they think we should do.
Anyhow, we didn’t end up getting out of Sick Kids until 6:30pm. We are VERY happy to be home for sure!
So now we just wait to hear from the cochlear implant team about whether or not A is a candidate and hopefully get the date for the surgery!!!! I am sooooo excited that my little man will be hearing my voice!
My little man this morning when I went to get him was at the bottom of his bed…
Well my little man was admitted into the hospital yesterday. Tuesday night I put him to bed and around 1am Wednesday morning he was up and fussing. This went on the entire night. Grandma was here yesterday around 9am and he was still very lethargic and had non stop movements. He just couldn’t sleep and if he did fall asleep he was right back up within ten minutes. I tried to get ahold of his GI team at Mac but they were not in yesterday and his ped wasn’t either, go figure.
Grandma left at 2:30pm and I took A’s temperature because he felt a bit warm. It was almost 104 so I gave him some advil right away. After an hour I checked his temperature again and still no change. At 6pm I gave him some more advil and his temperature came down to 103. His mouth was very dry so I got my syringe out and put water in it. He was going nuts! So I decided to get out a bottle and try that…take a look.
You can see how sick he is in the pictures but I had to get him with that bottle. When I would take it away he would fuss and stop as soon as he had it. So after about two hours of him sucking on it guess how much water he took from it? NONE! LOL
Daddy came home around 6:30pm and I decided that we needed to take A into emergency to get some x-rays done. His breathing by this point seemed labored and he just was not happy at all.
We got into emergency around 8pm and they took us right back. Upon putting a saturation monitor on him, he was only satting in the 70s so they put some oxygen on him. The doctor wanted to start an IV but I told him I wanted to blood work done first and then we would discuss the IV.
They did a chest x-ray and an x-ray of his belly because I was worried that his tube wasn’t in the right spot and there may have been a possible obstruction. The blood work came back that he had a very high white cell count which definitely means that he has an infection. The liver count was also a little high, but his doctor said not to really worry at this point. The x-rays both looked good so I guess that is a good thing.
His ped actually came into the hospital to see him about 11pm and that is when he told me that he wanted to admit A and that there was no way that he was going home. He said that he would do an IV and I told him that I get upset when it takes them many pokes to get one in. He looked at A’s hands and said he could do it in one. So I said okay. However after two attempts it still wasn’t in. I know that he felt very bad, but A was so lethargic that he didn’t really seem to care what they were doing. His ped said he wanted to try one more time and if he didn’t get it he would run pedialyte through his tube. Third try, no go. After some more discussing of the issue he tried ONE more time in his foot and got it in.
We were taken up to a room at about 2am and I was hoping after such a long night the night before and a long day that he would sleep wonderful. Nope not a chance. He was just as bad as the night before. It is so heartbreaking for me to watch him like this and there is nothing I can do.
I have had about three hours sleep in the past two nights. Today for A was just as bad. His fever was still up at lunch so they gave him some more tylenol. At about 2pm I was so frustrated that I went over to the nurses station and told them that they needed to order some medazalam for him. The nurse came back and said the doctor said no because it is too strong for him! I told her I had a prescription for it at home to use so they could do it.
3pm, A was very off colour and just boiling. I went and got the nurse and she immediately called his ped and he came over to see A again. It was then that he ordered the medazalam for him and said he wasn’t going home today either.
So anyhow, I am here just to make formula (they don’t make 30cal at the hospital) LOL and then I will be heading back. Joyce is coming to stay with him tonight so I am looking forward to coming home and sleeping for the night.
I will be sure to update when I can…..