Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.
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 I should have known not to say anything about A having such a great day! The desatting started again last night and he had a pretty unstable night. This morning it was constant desats to the point where I took him out of his chair, put him in his stroller and took him for a walk. I am just SO tired of hearing the beeping and seeing him drop SO much. It is getting SO frustrating!!!
The chest team and complex care doctor came in around noon and wanted to try out the NPT tube (nasal trumpet). I said no at the time but as the day went I thought it would be worth a try. I knew it was pretty far feteched and too easy a cure but I said okay. I could feel my heart pounding and my eyes filling with tears just thinking of it. I cannot stand feeling like I AM the one putting him through all of this nasty shit.
The NPT tube is NOT nice to look at and I cannot even imagine having it put through my nasal cavity and into my airway. I told the RT when he came in that it looked big but he said it was the right size. I asked about how well it is handled and he told me that once it is in you don’t know it is there. Hmmm really? I then asked if he has put one in and knows this or is this just what they think? This is what they think. I then said that I had to leave because I just cannot handle hearing A scream and cry. Then I feel like a worse mother for not being able to comfort him at times like this. It really breaks my heart though to look at him and he just has NO IDEA what is coming.
So I left and came back about ten minutes later. The RT said that he tried both sides of his nose and the tube was too big so they were waiting for a smaller one. WTF!??! When are they going to learn that mothers know best?!
Anyhow the tube is now in and he is doing okay with it in but it definitely isn’t changing much. He is still desatting and doing all the things he was doing without it. It has also made him more junky sounding and is needing the odd suctioning. Poor guy SEES the suction tube and he will drop to the 40s.
I am giving it the night but there is no way that I am going to be keeping it in with it not helping. The RT came by tonight with another one and said there has to be a spare at the bedside. LOL I told her that if this one came out then that was it. She asked me if the docs know this and I laughed and told her they probably would.
I am at a loss really for thinking we are going to find the answers to what is going on. I just don’t know what they could be missing, but they ARE missing something.
Well I have to say (without jinxing anything!) that A has been VERY good the past two days, including today. I went home on Friday night (only the third time in almost 7 weeks) as I had to go and get my wedding dress! I could not keep putting it off as it can take up to 8 months to get in and I only have under 6 months left! The owner of the store though said she would work miracles for me. So before heading home for the night I had requested a certain nurse for the night and then the one for the day yesterday. This was the ONLY way that I was leaving as I knew that they would take great care of him.
Friday night Aunt K and Grandma S came up so that they were able to come along with Aunt Shorty, Grandma C and I. I did end up getting the same dress that I had first tried on in October. I absolutely know that it is MY dress and can’t wait for the day that I get to wear it and walk down the aisle.
Saturday my heart went to my feet because I got a call from the hospital in the morning. It was the doctor that is on for the weekend for complex care. He was asking me about the NPT tube (nasal trumpet) that we had discussed on Friday. Before I left Friday night I told them that I wanted to be here if they were to do it because I felt that I would be the best judge on whether or not it was working. Anyhow he wanted to know if it was okay to put one in if he felt A needed it. So I told him exactly what I told them Friday night. Well he then said “well you aren’t here 24/7 to judge it anyways.” Now I have to say that I wish I had of responded, however I think I was so shocked by what he said that by the time I would have he was already talking again. I should have said, “listen buddy, I AM there 24/7…this is the third time that I have been home in almost 7 weeks. How many weekends have A and I spent just hanging out and then the ONE weekend that you guys want to move your asses and do something I am at home?!?!??!” Oh I was just so angry!
Anyways, A never had to have the nasal trumpet placed and he had a wonderful day yesterday while I was out. Daddy and I got here last night about 10pm and gave him a bath before he went to bed. We then headed over to the hotel for the night. Today was a GREAT day for him and he was VERY happy and seemed like he was back to his old self. I just don’t want to get to excited as we all know how A doesn’t play by the rules. He also came off oxygen today at noon and is STILL off. This past hour he has been desatting quite a bit so we will see, but so far so good. I am MUCH better with seeing 70-80s then I am seeing single digits or 20s! He only had two big desats today and those were both with crying.
Well I am off to bed…everyone keep those prayers coming!!!
Well shit finally hit the fan. Today has been absolutely crazy to say the least and I was raging since this morning. ALL DAY and I mean ALL DAY A has been fussing, crying, turning blue and satting pretty much under 90 from 9am until 2pm. NOTHING could settle him.
The complex care team came in this morning and it started off my frustration. They asked if I was willing to start the iron and I refused. I told them that I thought it was ridiculous that they thought iron would “cure” A. I told them how I was frustrated with what is going on and nothing being done. There next answer? Well how about we try him with a nasal tube that will keep his upper airway open? Hmmmmmm NO. I mean honestly is this the best that these TOP doctors can come up with?! I told them I wanted to speak to the lung doctor I first dealt with. They told me that I could talk to the fellow. I don’t want the fellow. I don’t want the resident, I want the actual doctor. So when they left I asked the nurse to try. Didn’t work. The chest team said that if I had any specific questions that I could talk to complex care and they would relay it. What a joke.
After them leaving I continued to deal with A. I was crying pretty much most of today and I have a massive headache because of it. It is just killing me inside seeing A so upset. It is at these times that I just want to run screaming through the hospital. It is times like this where I just want to pack him up and go home.
After lunch a social worker came in to see how our hotel stay went the other night. She then asked if there was anything she could do for me and I laughed and told her “ya, find me a new doctor.” After telling her who I had she said he was pretty high up there so she didn’t know what would be next. I rambled on and on and of course the tears started to come. I felt like I was going to lose it. Actually, I guess I kind of did lose it.
Anyhow, she then asked if I thought about the Ronald McDonald and I told her I didn’t because I wasn’t thinking I would be here this long. I then told her that I was ready to pack up and go home. She thought I meant by myself but no, I meant with A. Well then she seemed very interested in what was happening. I told her in a quick five minutes update what has been happening and that I wanted to see the lung doctor that admitted us. Just as we were talking about him, the nurse practitioner that is on complex care came over. I got worse.
I am confused and not getting straight answers. ENT ruled out airway but yet really they can’t because they have to do a scope while he is awake and it wasn’t done that way.
Chest ruled out lungs from an x-ray. Said his underlying BPD isn’t that bad. Hmmmm really? Because I was told that his lungs were 40% fat and this was caused by chronic aspiration. Does that not seem odd? Add in the fact that he gets ventolin and q-var twice a day?
Neurology ruled out central apnea just from reading his MRI…..don’t know how this happens.
I was also told it could be reflux. This was the bomb. Reflux?! I did the fundo because they told me it was the final last resort to stop it. So how does that in any way mean reflux is still possible?
Cardiology ruled out heart from reading one previous echo from another hospital. All the PVCs and irregularities mean nothing. The dropping of his heart rate means nothing. The surgeons who have brought up shunting are crazy too
Anyways I said all of these concerns and how I was tired of being here. Tired of feeling like no one gives two shits what is happening. Tired of hanging out day after day. She said that they are concerned. I said “oh really? How is anyone concerned when my child is turning blue and yet NOTHING is being done?” She didn’t know what to say. I told her that I wanted a chest CT done, I wanted ENT to see me again, I want to see genetics. Well next thing you know she is paging the lung doctor I wanted to see. But yet they wouldn’t do this earlier? I was ready to go on a hunt for him myself. Funny how things blow up and things start getting done. None of this changes the guilt that I feel though. I feel like all of this misery is my fault. I signed the papers for the fundo and now A is miserable. It totally sucks especially when I never wanted to do it anyways.
So I waited and waited. No doctor. He can’t come until tomorrow. They are not dismissing lungs until they show me that CT scan that I want
I asked the nurse on tonight how often they see kids come in with sats like A. She said it is very, very rare. I asked her about the ones that are there like that, what are they in for…what is wrong with them? She said “lung disease”. Funny
Anyhow, the fire is lit under their asses and this one isn’t burning out.
Well things are pretty much the same. A had two episodes yesterday. The one last night was about 45 minutes again with saturations below 30. The one earlier in the day was 25 and the nurse was able to listen to his chest while he was in the fit. There was absolutely no air exchange at all. Of course with it being the weekend it is impossible to get any answers to anything.
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.
Well we are fianlly moved back up to the floor that I wanted to be on. We got sent up yesterday and I am much more at ease. Uncle S and Aunty A came up yesterday for a visit and we headed out to the mall for a couple of hours to give me a break. I feel like I can’t even keep my thoughts straight lately, even think straight. We are going on week five and I am just tired of being here. I am tired of not getting answers. I am tired of fighting and fighting.
Yesterday A had three of his little episodes where he screams and is VERY upset. He drops his oxygen and NOTHING consoles or comforts him. They all last at least thirty minutes and they are really frustrating because I just don’t know what is going on. I have noticed that about three of them start about thirty minutes before his feed is supposed to start so I am beginning to wonder along with a couple of docs if he is doing it because he is hungry. I just don’t know. I can’t imagine getting that upset with being hungry, but it is a new sensation to him so who knows. I have been keeping track of them all so I can try and figure out what is happening. Now I know monitors get kind of out of whack when oxygen sats are very low but yesterday at 2:30pm when he had his second episode the monitor said 8. This is just beyond insane.
Today he has already had two episodes and it is only 1:30pm. The first one started at about 8:15am and lasted until 9:10am and the second was at 11:55am until about 12:20pm. The complex care team was in for the last one and they really have no idea either. I was kind of put back though when they said that they weren’t really concerned about his colour change during these episodes because he is crying. Because I sure have a problem with them considering that in two years of being home I have never ONCE seen A as upset as he is during these times.
A continues on morphine and is slowly starting to wean this afternoon. It will take a couple of days to do it properly so he does not suffer any sort of withdrawals again.
I just want answers.
Well I have to say that I think I almost ready to scream, cry….I just don’t know. I am completely exhausted and feel sick to my stomach. I just don’t understand what the heck is going on around here. The nursing last night was absolutely awful and I just don’t understand how they can be the way they are when A is in a constant care room. I had to ask for his mask last night. I had to do his feeds. He is on 80ml/hour and then off for an hour and so on. Not ONCE did she come over to check if it was even going.
I then asked for the prevaicd solutabs and the resident surgeon on call came in and argued with me for about twenty minutes. She said that she didn’t want to make any changes overnight and wanted me to give the capsule dissolved. However this is not the way that it is supposed to be done with a g tube. I wasn’t asking for another med so I didn’t see the problem. Finally I just got tired of trying to be the one that is right and left it the way it was until this morning. Do we mothers not know best?!?!?!?
A had a pretty good day yesterday until last night about 8pm. He was screaming and going off colour and was inconsolable. I have NEVER seen him so upset and it was making me upset. I left the room for about fifteen minutes or else I know I would have said some things that I knew I didn’t need to. I thought for sure when I got back that something would be done but instead I walk into the room with A still screaming, still satting in the 60s and heart rate 190. I was just livid. I picked him up to cuddle and he settled after about ten minutes. Then the teeth grinding started. And I mean to the point that I thought his teeth would fall out. I mentioned it to the nurse and she paged the doctor. I told her I didn’t need the doctor but they came anyways. Answer? Nothing. Why is he crying and screaming? No answer. Finally I told them to give him some morphine. He never got weaned properly as his IV came out yesterday morning so they just left it out. This meant he went from having continuous morphine for four days to nothing.
I was just about ready to pack up all of our stuff and leave. I have been strong for this past month that we have been here but I have had enough. I can tell you though that so far I am EXTREMELY happy with the fundo and g tube feeds. It is so amazing how well things are going that way when I was so against doing the fundo in the first place. I don’t want to jinx it but so far it couldn’t be better! I am going up to 120mls an hour at noon today and then off for two and so on. I hope this goes well too. I don’t think the crying has much to do with the feeds because when I vent his tube about twenty minutes after the feed there is nothing in his tummy which means he is digesting it well. The surgeon did say this morning that the feeling of food in the tummy might be bothering him as he isn’t used to it. As well he said that A shouldn’t really have that much pain anymore from the surgery but he did say that NOT having reflux is probably VERY different for him as well. I mean his whole life all he has done is reflux and reflux and now he isn’t at all.
Anyways I am sorry for the not so positive post but I am at the end of my rope. I guess I should get back up there….who knows what he is doing.
Just a short update. Well the surgery is complete!! I am so happy to be past the worrying of how the surgery would go. I want to say first that the delayed emptying scan that he had prior to the surgery showed that he actually had faster than usual motility so this was a great thing for me to want to try out the g tube!
Well 8am A went into the OR. I was strong up until the point that we had to say goodbye and he had a huge pout on his face. The tears started and I just felt so guilty for doing the fundo when it is something I have fought for so long. The surgery was 4 hours long and we had the top surgeon and top anethicist in with him. Grandma and grandpa S came down on Sunday and grandma and grandpa C came down just as he was taken in to surgery.
Things went awesome with NO complications. They were able to do it by lap which was great for him! Once in there they realized that A had a hiatal hernia that was pretty large so they put a few stitches in the duodenum to fix it up. They also took out his gj tube and placed a g tube.
In recovery of course we had issues with his oxygen sats. He ended up having the ICU team and the critical care team come in to see him. Every time that he was touched or he moved he dropped down to the 30s. He was on 100% oxygen and satting about 94. He was then moved up to the constant care room after the docs said that he would be better off there at that point than in the ICU. He stayed at 100% with many, many desats to the 30s and 40s. I was frustrated and so tired that I was getting irritable with the nursing and doctors. I really wanted him to go back up to the floor that he has been on the past month but they said that he had to be on the surgical floor.
At about 9pm last night I finally had them up his morphine and he seeemed to settle right down. The RT was also called in and she hooked him up to the high flow at 60% where he stayed at all night last night. The nurse that was on last night was wonderful and the ICU docs told her that she had to be right there the minute that he rang. So J, his parents and I went for dinner and then got a good nights sleep at the hotel.
This morning his mom and I came over about 7:45am and I was livid when I walked in the room! He was under his blanket completely, crying, oxygen off his face and off colour. The sat however was saying 91 but then I realized that it wasn’t even on him! I told the nurse that I had a problem with all of this once I found out WHO his nurse was and she has been great since. It is absolutely insane that he is in constant care and yet things like this happen. And then they wonder why parents have to stay and not leave?!
They have been able to wean A down to 40% oxygen with sats about 96. He is definitely more alert today and not in so much pain. I am hoping to get the oxygen requirements down more by tonight. They are going to be starting to run clear fluids through his g tube any time now and see how he does. I am so nervous about this whole g tube thing!
Anyways, I am happy things are over with and I just hope that things improve within the next few days. Thanks for all the thoughts!!!
Well things are still good around here. A woke up this morning with a fever and snotty nose with tons of desats. With one dose of Tylenol he was already better but the doctor wanted blood work and to send him for a chest x-ray just to be safe. All looked well. We can cancel the swab for RSV in the morning hopefully because that is just not a nice procedure! With his blood work today he went down to 43 which gave them a run for a bit. It confuses me so much how he can go SO low with crying. I really don’t think that is related to reflux which just adds another piece to his puzzle.
I received some numbers as well from his ph probe that he had last week and it really is interesting to see what they said. It showed that he had 178 episodes of reflux over the 24 hours with the longest episode lasting 23minutes! Overall the percent was 8.4.
Went out tonight for dinner with J’s mom who has been here since Monday. It was nice to get away from here for a bit knowing that he was okay.
So today is the two year anniversary of bringing him home from the NICU! I cannot believe how fast this two years has gone. I remember walking out of there like it was yesterday.
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
So the team meeting is done with. I have to say that I think that I did very well considering the range of emotion that I was feeling. It is always so hard to go into these types of meetings strong and confidant and then feeling like you are going to start bawling as soon as you start to talk. It was a little intimidating having so many different types of doctors in there all listening to what I had to say and asking questions.
So here is the plan. Every single doctor involved agrees that we need to treat the reflux. The first step is having a scope done of his airway and lungs. They are also going to do a wash of his lungs and send off a sample to see if this might help them at all. The scope is going to be done in the OR under a general. I am happy because A has had too many scopes for my liking awake and it is not nice at all. However the ENT is not comfortable doing it while awake anyhow because of the spells that A has. The general worries me a bit though because he always does so poorly when any type of sedation is used. This all being said, his ENT said that he would like to see A in the ICU afterwards as an extra precaution.
It also came up that he would like to remove A’s adenoids. This scares me even more because it is a surgery and added to what is already going to be happening I don’t know what to think. However his ENT and I agreed that if he felt once getting in there and seeing for sure the size of them that it wouldn’t really make a difference then he would leave them. If he felt that they could be contributing to his issues then he will remove them. Hard to stay positive when the ENT is the one saying how he is worried how A will do.
After the scope comes one of my biggest fears. Fundo. I am starting to feel more comfortable with it however knowing that I have tried everything else and knowing that it really isn’t an option anymore. It is life or death.
After recovering from the fundo will come the sleep study. NOW, we are hoping that the fundo will help MANY of his desat spells. We are hoping that his BIG spells are caused by reflux. Of course none of this we know for sure. Which makes it hard but again, nothing left to do. I was not able to speak with GI as she was called to surgery but I was shown the ph probe results that he had and it did not look good at all. I am still waiting on numbers of how many times and so forth. It is just so hard to believe how much he is refluxing but yet he is the happiest kid in the world. The docs agreed that it does make it harder for them as well because they aren’t seeing a “sick” acting child. Instead he smiles and coos at them!
Now the scary part. Every doctor agrees that they do not think that the reflux is his only issue. So the sleep study will show what is going on at night (if it isn’t just reflux). I asked about this because he does drop a lot during the night but he is worse during the day. During the night he drops to the 40s, 50s and 60s but it is odd because I can tell by his breathing that he is going to do it. During the day he changes colour MANY times and we think it is different then what happens at night. Central apnea versus obstructive apnea.
Of course this is when the trach came up again with the vent. But we are going to wait to go down that road. I need everyone to please pray that A will not have to be trached!!! I get very emotional just thinking of it and it just plain sucks.
The main doctor that I have been dealing with this week came in after to see how we were. Sad. Scared. Numb. She is in her last year of residency and I have been very pleased with her. She told us tonight that she knows how hard it is for us to make such crappy decisions, but that A was not going home until they figured him out. WOW. Finally. Last week the doctor wanted to send us home because he was stable. She said her team thinks he is far from stable and they are afraid that if we brought A home now that he would die. Blunt. To the point. But REAL.
So all in all it looks like we are in for a long stay. It has already been a week and man oh man does it ever suck! I came home tonight to get a good sleep and put up some pictures of my little man as I am sure that everyone misses seeing his face! The nurse that is on tonight is absolutely wonderful! I asked her if she used to be a NICU nurse because she just has that about her and she said no she just likes kids. I told her that I have met many a nurses that work with kids but don’t seem like she does. Well long story short, her younger brother has severe cerebral palsy. It is very obvious that she has dealt with a lot as she is compassionate, loving, supportive and caring.
I have to say that although I was frustrated in the beginning with this hospital and these docs, they have really stepped it up. I just hope that whatever lies ahead and whatever decisions are made that I will feel good. I hope that everything works out well and A stays strong and keeps fighting.
Now for some pictures!!!
I also want to say thank you to Shannon (Olivia & Avery’s mom) for coming to visit last night. It was SO nice to have you come down!!! You are an absolutely awesome person and I am lucky to have met you. By the way, the lasagna was GREAT!
So we are still here and not going home. I told them that I was not comfortable taking him home with what he is doing. They then said that this is what he has always done…basically asking what the difference was. The difference? I am sick and tired of seeing my child go blue. I am sick and tired of his crappy sleep which I truly believe has to do with his desats. And now after seeing him on a monitor for the past two days it has made me realize even more how crazy it is. He is CONSTANTLY ringing. Constantly dropping. Constantly going off colour. I told the nurse that we need a monitor that rings off when he is satting above 90 instead of below. It would definitely be going off less.
We are in a constant care room. Means 24 hour 7 day a week monitoring to me. Well the girl next to us had her IV ringing for about 30minutes…no nurse. A was in his bouncy chair satting 60s, crying and off colour. No nurse. (Sorry but I am just a bit bitter right now.)
So the doctor who talked to me earlier who said that she would come back has not. That was 7 hours ago. I still have no idea how the probe looked or what is next. Nice way to leave a parent hanging for the weekend eh?
Well I am pretty upset right now to say the least. The doctor just came in to speak to me and there is talk of A going home!!!!!!!!!!!!!!!!!!! They say he is stable. Stable?!?! Dropping oxygen saturations to the 30s, 40s, 50s etc 223 times in 6 hours is stable?! The answer…he does this at home!!! I just don’t know what to do anymore. This is absolutely crazy. I told the doctor this the other day when he said he wanted to admit him. I said that nothing would be done. And it seems that I am yet again right. I just don’t understand. I am angry, hurt and frustrated.
To top it all off A has a fever so they did blood cultures and a swab for RSV. Yes, RSV. The floor he is on contains tons of sick kids with RSV and rotovirus. I’m so flippin mad!
Is there ANYONE out there that will EVER help my little man?
Well we came here yesterday for a consult with ENT and then a probe/sleep study. Well the probe went in fine but the nurse that put it in refused to leave him after seeing how he constantly desats. The sleep study was then cancelled and he was admitted. He is now in pediatric care where we wait. I have spoken with many doctors so far and they want to get to the bottom of it. Every doctor has SEEN the video that I have of A’s spell in November and they have also seen how he desats over and over and over. Last night he had a sat probe on from 12am-6am and it showed 223 desats. YES that is 223! Of course some of these are not actual but this is a pretty significant number.
We have talked about his entire history and how this has been going on for WAY too long with nothing being done. Of course the docs think at this point that there is definitely more than one thing happening and we just need to figure it all out. Talk of the fundo and of the trach has come up.
So please pray that this is what we have finally been waiting for! I don’t know how long we are here for but I would imagine a while. The doctor yesterday that came in to see him (lung doctor) would not even let us go hang out until the bed was ready for him. We had to go to emergency so that he could be monitored constantly. And he still is obviously. Boy I sure don’t miss the monitor sounds!
One day at a time…
Yesterday we were back to our regular busy schedule around here. A had his dietitian come along with his OT and PT. His PT Monique was here first so she started to do some work with him but he was NOT happy. Shelley then showed up (OT) and he was just getting way too upset for me to let them continue. He was going very off colour and I was worried that he was going to go into one of his spells. Liz showed up so we got A naked (his fav!) to get his weight. Well after about 15 minutes on the scale we could NOT get a weight on him. He was way too excited and just wouldn’t sit still long enough for it to read his weight. So by watching it and guessing he is the same as he was a month ago. Fine with me!
He then went back to trying his work with PT and OT. He did great!!!! Look at my amazing guy!
It was great too because daddy was here and was helping them while I talked to his dietitian. He never gets to see what A does and how great he is for them. He was actually doing VERY well at being on his knees and hands (with three peoples hands of course!) Monique is always so amazed with him and told us yesterday that she does not know very many kids that have such severe CP but yet are able to open their fingers and hands to grasp things. That’s my boy!
Daddy and I had some running around to do yesterday and then we headed over to see Sean and his mom Mary. She brought out Sean’s first wheelchair and it is SO cute!!
So after seeing how well A sits in it Mary said that she is going to get some new tires for it and that we can borrow it!
Sean absolutely loves seeing A! It is so funny how he worried about everything with A and what he is doing. Mary was holding A but Sean sure didn’t miss a thing! He kept telling her to be careful because of A’s back (the arching) and his implant kept beeping so he would tell her that it wasn’t working. He is a very curious guy and always has lots of questions about A. Like why he goes blue. Why he doesn’t talk. Why he shivers. So cute.
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….
Well I haven’t done a post in a couple of days as I have been way too tired to do much of anything. I still have not even gotten close to catching up on the sleep that I didn’t get while A was in the hospital. So first here are the birthday pictures for Olivia and Avery. We had a great time and it is always fun to watch A when other kids are around!
Elizabeth, Avery, A and Olivia
Thanks Shannon for having us we had a great time!!! And WOW, the food was just AMAZING!!! I definitely need to get a few recipes from you!
So yesterday was Father’s Day. A giving daddy his card…
Hanging out at grandma and grandpas with his balloon…
The last couple of days A has been right back to himself. Smiley…happy, the same kid he was before surgery. Nights, well that is a different story! I don’t know what is going on but he has been awful at night and it is something that I am really not used to. He is starting to act really clingy and scared lately. I guess it is kind of a good thing because he never showed really any emotions before, but it is strange at the same time.
I just finished doing a sat trend today that I started on Friday. I will hopefully get the results of that soon from the doctor that did it for me. I do have to say though that it is very hard to see how much he desats considering the fact that he is two years old, and this is something that they told me would end by 34 weeks gestation! Well they were wrong because we are WAY WAY past that!
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…
My little man is now 22 months old! (As of yesterday) I cannot even believe that in just two months he is going to be turning 2 years old!
Yesterday A’s dietitian was here to weigh him. He is now 22lbs13oz! He has been gaining 15grams per day average which is great considering that he has been at 45ml/hour for a long time now.
So today Leanne came from the company that deals with all of the equipment for special needs. She brought over the superstand for us to try using with A for a bit! It was so exciting. I really am not sure which stander I like better though. The buffalo stand that we tried a while ago was more compact than this one and didn’t take up as much room. However this one I believe gives A more support. I think this really helps with him feeling more secure. With the buffalo stander you could tell that he wasn’t really liking it after short periods of time. This superstand really helps hold him secure. I hope that it will help him feel more relaxed and able to use his hands/arms more than usual. So we will see how it goes and then we will decide which one we want to order for him.
So the reflux issue is still a problem. He has been doing a little better with the amount of vomiting but not even close to what I would consider okay. I have also noticed the past week or so how much he drops his sats. Very frustrating when we thought we were past that. It is very obvious that it is the reflux that is causing this issue. I will be taking him to see his GI next week and I am hoping that she will be able to help him out in SOME way.
Grandma was here today and she had A holding some different things…
First is his little shaker…
Grandma’s granola bar…
Grandma’s banana…look at that curious face!
Open wide!! (The funny thing was he was licking the banana!) He didn’t gag or throw up! I was so excited that I took a bit and mashed it up and then tried to spoon feed it to him. Right when it went in his mouth he threw up. He sure did like just licking it though and getting the taste that way. But hey, it was a step for him!
I just LOVE this shirt on him! I bought it at Christmas for him and thought it would be way too big for him but it fit pretty good!
A in the superstand…what is that face all about?! (Might I add that those are just the most gorgeous blue eyes EVER!)
My smiling little man…this however is the only one in the stander with him smiling. I tried and I tried but nope he wouldn’t do it. Strange since he is normally the smiling king!
The collar around his neck is not part of the standing frame. We just received that today though for him to help with support. In the stander he cannot be straight up or even close really or else he pulls his head forward and it will fall down and he can’t lift it up. So this collar doesn’t let him do this. I found that it worked pretty good in the stander because that way he could be standing right straight and not have to worry about having his head flopping down.
Well today was interesting for me to say the least! A is now getting to the point where he wants to be entertained ALL of the time! (I think I have said this lately somewhere). Anyhow, he was up at about 9am so I did the normal routine of getting him out of bed, changed, puffers, meds, clean tube, clean feeding bag and so on. I had him in his chair for a bit and we played with some toys and blew bubbles. He really did not want anything to do with the chair so I laid him on the floor, got some toys and tried that. Nope. So I put on one of his Einstein videos, put him in his swing and sat down to read the paper. He did okay for about ten minutes. It was then that I decided to get him dressed up to head out for a walk. He normally LOVES going out for walks. Lately when he sees that we are going out of the door he gets VERY excited. So, good sign…he did get excited about going outside. We got just down the street and he was NOT happy! I had to stop a few times to settle him down. I am not sure really what was wrong, but he didn’t want to be in his stroller. So anyways, I get to the store and take him out of his stroller and head inside. He is fine. Smiling at the guy that works there and so on. We go back outside and I go to sit him in his stroller. NOPE, NO WAY! So here I am carrying him in one arm and pushing his stroller with the other. He was fine this way. I get home a little more tired than usual because he is getting SO heavy and get him undressed from all of the extra clothes he has on. He is fussy so I lay him down and he wants to just suck on his soother. By noon he was fast asleep.
So I do what I need to around here. Did the dishes, a couple loads of laundry, cleaned the bathroom, the bedrooms…vacuumed (yes, I have vacuumed everyday since getting my Dyson! LOL) He didn’t wake up until about 2:30pm. A very good nap considering that he wasn’t up until later.
I thought that maybe since he slept so well that he would be in a better mood. He was for a while. Then the crying started again. He was SO upset that he was totally off colour and nothing I did would calm him down. This went on for about twenty minutes until finally I just broke down and started crying. I was sitting on the floor beside the couch where A was laying. Cujo doesn’t like when people are upset so he was trying to get in my face and well Lady, she hides. So about two minutes into me breaking down I look at A because he has stopped crying/fussing/turning off colour. And there he is staring at me. Intently. (I think this whole fussing/crying thing is harder on me, because A is normally very happy and not fussy at all.) Anyways the next thing you know, he is smiling at me! I had to giggle myself because it was just so darn cute! Here he was screaming and crying and NOTHING I did would make him stop. I start crying, he stops and then is smiling at me! I said something to him along the lines of “mommy doesn’t like it when you are upset bubbers”. He does his little laugh. (I can’t really say a laugh because you can’t hear him…it is like when he laughs he doesn’t breathe.) I pick him up off of the couch and just cuddle him. I tell him how much I love him, give him tons of kisses and sit down with him. I lean him back on my legs and he continues smiling…..what a kid!
So here are some pictures from yesterday….