Well everyone, I signed the papers this morning for A to get the tracheostomy done. I talked to the ENT for about an hour and I just know that this is a good decision. The best chance at giving A a better chance at life and hopefully we will see a great improvement.
It has been so hard because for his entire life we have been dealing with his low levels of oxygen and his big “episodes”. We were always told that they were nothing to worry about and he would come out of them. Well I have since learned that is not the case. The team here just cannot believe that NOTHING has been done for A before now and we are just so lucky that he is alive.
What is a tracheostomy?
A tracheostomy is a surgically created opening in the neck leading directly to the trachea (the breathing tube). It is maintained open with a hollow tube called a tracheostomy tube.
Why is a tracheostomy performed?
A tracheostomy is usually done for one of three reasons: (1) to bypass an obstructed upper airway (an object obstructing the upper airway will prevent oxygen from the mouth to reach the lungs); (2) to clean and remove secretions from the airway; and (3) to more easily, and usually more safely, deliver oxygen to the lungs.
What are risks and complications of tracheostomy?
It is important to understand that a tracheostomy, as with all surgeries, involves potential complications and possible injury from both known and unforeseen causes. Because individuals vary in their tissue circulation and healing processes, as well as anesthetic reactions, ultimately there can be no guarantee made as to the results or potential complications. Tracheostomies are usually performed during emergency situations or on very ill patients. This patient population is, therefore, at higher risk for a complication during and after the procedure.
The following complications have been reported in the medical literature. This list is not meant to be inclusive of every possible complication. It is listed here for information only in order to provide a greater awareness and knowledge concerning the tracheostomy procedure.
Airway obstruction and aspiration of secretions (rare).
Bleeding. In very rare situations, the need for blood products or a blood transfusion.
Damage to the larynx (voice box) or airway with resultant permanent change in voice (rare).
Need for further and more aggressive surgery
Air trapping in the surrounding tissues or chest. In rare situations, a chest tube may be required
Scarring of the airway or erosion of the tube into the surrounding structures (rare).
Need for a permanent tracheostomy. This is most likely the result of the disease process which made the a tracheostomy necessary, and not from the actual procedure itself.
Impaired swallowing and vocal function
Scarring of the neck
Obviously, many of the types of patients who undergo a tracheostomy are seriously ill and have multiple organ-system problems. The doctors will decide on the ideal timing for the tracheostomy based on the patient’s status and underlying medical conditions.
The tracheostomy procedure:
In most situations, the surgery is performed in the intensive care unit or in the operating room. In either location, the patient is continuously monitored by pulse oximeter (oxygen saturation) and cardiac rhythm (EKG). The anesthesiologists usually use a mixture of an intravenous medication and a local anesthetic in order to make the procedure comfortable for the patient.
The surgeon makes an incision low in the neck. The trachea is identified in the middle and an opening is created to allow for the new breathing passage (tracheostomy tube) to be inserted below the voice box (larynx). Newer techniques utilizing special instruments have made it possible to perform this procedure via a percutaneous approach (a less invasive approach using a piercing method rather than an open surgical incision).
General instructions and follow-up care after tracheostomy.
The surgeons will monitor the healing for several days after the tracheostomy. Usually, the initial tube that was placed at the time of surgery will be changed to a new tube sometime between 10 and 14 days following surgery, depending on the specific circumstances. Subsequent tube changes are usually managed by the treating physician or nursing staff.
Speech will be difficult until the time comes for a special tube to be placed which may allow talking by allowing the flow of air up to the vocal cords. Any time a patient requires mechanical ventilation, air is prevented from leaking around the tube by a balloon. Therefore, while the patient is on a mechanical ventilator, he/she will be unable to talk. Once the doctors are able to decrease the-size of the tube, speaking may be possible. At the appropriate time, instructions will be given. Oral feeding may also be difficult until a smaller tube is placed.
If the tracheostomy tube will be necessary for a long period of time, the patient and family will be instructed on home care. This will include suctioning of the trachea, and changing and cleaning the tube. When the time comes you will be provided with ample information, instruction, and practice. Often, home healthcare will be provided, or the patient will be transferred to an intermediate health care facility.
This could be done as soon as tonight. I will keep everyone updated. Please pray for everyone involved. And most importantly for A.
Where to begin? My little man is sick. Yesterday was a horrible day. He had a fever again, was requiring oxygen and cried/whined the WHOLE day. My heart was feeling broken in two. I can’t stand to see him suffer. To be so upset when he is normally the happiest boy that I know.
After getting home last night, we got a phone call at midnight. It was the ICU doctor calling to tell us that A had an episode that required some bagging and chest compressions. I got off the phone with him and just cried. I just can’t take this.
4am the phone was ringing again. It was the ICU doctor telling me that it happened again, that they were going to keep him off of the bipap and keep a close eye.
Our team meeting today was with all of the doctors involved. I found out then, that A actually flatlined during his episode at 4am for about 20-30 seconds.
It looks like we will be going the route of the tracheostomy.
I am scared right now. Please pray for A to have the strength to fight this. The will to go on. Please pray for the surgeons that will perform this. Please pray for myself and for Jeff to be strong and know we are doing what is right for our boy. But most of all, pray that this helps A.
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.
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 a week ago we headed to McMaster to see Neurology. We have not seen this neurologist since January 2007! The last time she saw A he was tiny and still on oxygen, so needless to say he has changed a lot in two years!
When we used to see this doctor way back and the discussion of A’s “episodes” came up she always felt that they were reflux related. We would see his GI and she would feel they were neurological. I felt pulled in all directions and didn’t know what to think. However today after giving her an overview of the past couple of years since she has since him, it has become very clear that these “episodes” are not reflux related at all. That in my mind is the only thing that has been ruled out with what could be going on with him.
She agreed that she did not believe they were seizures but that we should have another extended video EEG. Of course nothing happens quickly and she didn’t think that it would be until Spring!
So all in all not an appointment that seemed to get us anywhere but I didn’t expect it to. She did tell us that there was one little boy who she remembers that there were no answers for. It is tough for me to think this about A but at the same time all I can do is continue to do what I am doing and advocate for him and his needs.
So the past few weeks I have been trying to put A in his Pony walker. It is quite funny because initially he HATES it and screams but once he realizes that he can move he is fine.
He has not figured out how to turn it or back up so he does get frustrated when he hits something and can’t push through it! haha But lately his thing has been going into the kitchen. Maybe this is because he doesn’t ever go in there so it is exciting for him, but nonetheless it is adorable! He gets SO excited and starts babbling away as he is entering the kitchen and then he heads right to the back patio door. As you will see in the pictures at the bottom, it is priceless. I can’t even look at those pictures without tearing up. The things so many of us take for granted and yet a child who can’t just walk to a door and window and look out takes so much pleasure out of it.
Well it was one year ago today that grandma, A and I headed to Toronto Sick Kids for his sleep study and ended up admitted. I can’t believe how fast time goes and that it has already been a full year! It feels like yesterday that we were there.
In great news, A’s dietitian was here yesterday and he has gained TWO pounds in just under a month!!!!!!! He has not gained ANY weight in 13months so this is awesome. Nothing has changed except for the type of formula that he is on (we recently switched to Peptamen Jr) hoping that it would help with his emptying and possibly help him with sleeping. Peptamen is much more broken down than the Nutren Jr he has been on. So we are thinking that his body his metabolizing this new stuff MUCH better and letting him gain weight. We will have another weigh in, in three weeks time to see what it is like then.
A’s sleep has been improved this week which I shouldn’t mention because I always seem to jinx myself, but I am hoping that this will continue. I’ll tell you, ever since November it has been a nightmare and can’t be healthy for him nor for I!
This week we have also noticed a LOT more gagging with him. I am not too sure what this is from, but yesterday it was pretty constant and frustrating. Last night at 6:30pm he also had one of his new big spells that he has not had since my birthday on December 12th. They are so scary and I just wish that someone would figure out what on earth is going on with him when he does these.
As for some better news, A continues with his constant babbling. It is SO cute and daddy and I just laugh all the time at him because it is like he really thinks that he is talking. There are definitely new sounds that we are hearing and this is so exciting. Last night it sounded like he was saying “I could”. We are also hearing “b”, “d” and “n” sounds. And actually today is his 18month hearing age so we are hoping for more from him down the road. Like mama!
Understanding. It is really starting to show. Last night he was laying on the floor and daddy was on the couch. I would say “where is daddy?” and he would turn to look and smile. Then I would say “where is hockey?” and he would look at the TV. I kept going and he was just turning back and forth constantly!
As well when someone comes into the house he immediately starts babbling on and on and gets very excited. Yesterday he was doing some OT with his therapist (sitting) and grandma walked in. Well he immediately started babbling and smiling. I really think he is starting to recognize WHO people are.
This kid LOVES hockey. It doesn’t even matter what team is playing, if he sees it on the TV then he wants to watch it. If you are changing the channels and you put it on a hockey game and then change it again, he will complain until you put it back. It is very cute. Well most of the time! haha Gets a bit frustrating when you want to watch a show but he does NOT want to. Seems that he is getting his way VERY much lately! Who wouldn’t give this adorable guy his own way though????
In my last bit of exciting news!!!
Yes, we are pregnant again! This came as a HUGE shock to both of us but we are thrilled now that things have settled in. As you all know, I had a miscarriage on November 18th at about 5.5weeks. Well around Christmas I started to wonder why I had not gotten a period yet. Thought nothing much of it though but it was in the back of my mind. Pregnancy by the way was the LAST thing I was thinking! haha Aunt K had even asked me on Boxing Day if I could be pregnant and I said “no way!” Well December 30th I did a pregnancy test just for the heck of it and sure enough it was positive. Had NO IDEA how far along or anything. Especially since we had decided we were going to wait until after my brother and his fiance get married in May.
So I go to my doctor yesterday. He tells me that it is probably very unlikely that I am pregnant and that the positive result could be meaning that I had some tissue left over from the miscarriage. He said that you usually do not get pregnant IMMEDIATELY after a miscarriage. Well I told him that if I wasn’t then something was wrong because I have been very nauseous this week. So he sends me downstairs for blood work to check my HCG levels and tells me he will call me Monday.
Well I get a call this morning from him. My levels are 56,000!!! He said that puts me about six weeks. So I go for an ultrasound today at 2pm. Well I am 7 weeks and 3 days! We got to see the little peanut and its heart rate was 148. Very cool! So my due date is August 25th….lets pray that this baby waits until August!!!!
Oh where to begin!!! Well let me think back to my last post. Things have been pretty good around the S house this month (minus the nights! LOL).
December 8th I went to see my high risk doctor for my pre-pregnancy appointment. I absolutely LOVE this lady (she delivered A) and I felt very comfortable meeting with her and talking. I of course had to take A with me and well you can imagine how much fun that was. This kid does not like to sit still in his wheelchair and let us all know how upset he was about it!
Anyhow, things went well and she agreed that she would take me on for sure once I have a “viable” pregnancy after eight weeks. The plan will be to see her at least every two weeks for cervix ultrasounds to make sure that all is good there. We do not know why I had A early so she said that putting a stitch in the cervix would not be her first choice for me as that can cause issues on its own. IF for any reason my cervix started to thin out or open early then this would be something that we would definitely have to consider.
As well she would like to start progesterone suppositories around week 16. New studies are showing that it can help prevent pre term labor so this could be a great thing. Sounds like we will be getting to see the little baby a lot with all of the ultrasounds that I will have to get!
I told her about my miscarriage that I had a few weeks before seeing her but she was not concerned about it at all. Kind of put my mind at ease because I was a bit panicked about having one. However she said that it is VERY common and they would only become concerned if I was to continue getting pregnant and having miscarriages.
We also discussed the bloodwork/tests that is done in week sixteen for downs, spina bifida etc. I have been very adamant that I do not want these tests done. They are not 100% and there is no way that I would EVER have an amnio done so doing the initial testing is pointless. I don’t think I know ONE preemie mom that would have an amnio done. Besides, if I am meant to have a child with anything they are testing for then that is what will happen.
There was a bit of drama going on here in my Internet world as well this month. I have (should say WAS) a part of a group of moms that talk on a forum. I was in this group for three years, was a very active member and even donated money to support this group. I met MANY wonderful moms there that I felt like I “knew” and talked about some of them to my family and friends. Anyone in a group like this knows the closeness that you can feel.
Anyhow, I went to sign in one morning and it said that I was banned! I was a bit confused thinking to myself “how and why??” so I emailed the lady who developed the board to ask. The only explanation that I received was that “after some investigation, my story of A does not add up and what I say he does is not physiologically possible.” So I emailed her back saying that everything I say A does is VERY really and that obviously she has a lot to learn about medicine if she is saying that this is not possible. I wanted a better explanation. But to no avail. That is all I got.
Needless to say I was very angry, hurt and upset that this was happening. I think more so because of the friendships that I had formed there.
Well a couple of days later I get told to go and look at the forum. Now normally when someone is banned it is kept private. If anyone was to ask about me they would be sent a message PRIVATELY about what happened. Well this lady took it upon herself to post a not so nice message to the entire group about me. Basically it said that after some investigation they had to ban me as what I say is not real. That some moms make their children sick. That sometimes moms find information about others and use it as their own. I literally felt my heart go to my feet and thought that I was going to vomit.
The worst was yet to come. MANY MANY (think over a hundred) people replied to this post saying things like “oh my god I had no idea”, “I hope she gets the mental help she needs”, “I hope and pray A is safe”, “doesn’t surprise me” ….you get the picture. These were women that I have talked to and shared things with. Women who I thought were “friends”. It was so very sad that all of these women were believing ONE person. ONE person who never even followed Ashton’s story. ONE person who runs everything and can get rid of you just like that.
Over time though I have come to realize that I don’t care what they think. I know that I am a great mom, I know that what A deals with is very real. I know that my “real” friends support me. And I also know that ANYONE who believes this “lady” has no idea either.
Next came our visit to Sick Kids. We had a meeting with A’s team because of all of the issues he has been having since the beginning of November. From his being up at night way too many times, to his screaming fits, to his slow motility, to my thoughts of him having reflux again, to his new episodes where he is not breathing. I have to say that this meeting actually went better than any other one that we have had. I think that his main doctor has changed his tune and realizes that I am not going to stop bugging or go away!
Grandma and grandpa C came with us to the appointment. Upon entering the office A went into one of his new spells. However by the time I found the nurse and she came in A was breathing once again.
We discussed many things. I told them that I wanted an upper GI done to check his fundo. We also discussed possibly placing his on cisipride for his motility, but of course it is banned in Canada so there is a process that we have to go through to get this medication. The first step being an ecg of his heart.
The suggestion came up as well to try him on a different formula and see if that was to help at all. Since the appointment I have done so but do not notice any change in his sleep or his motility.
I was also told to up his prevacid to 90mg/day from the 60mg/day that he is on. However I was very adamant that I am not doing this because I don’t believe that I need to have him on such a high dose.
I also told them that I had not yet heard from the sleep lab for another sleep study or from cardiology for an echo. I also asked if they could arrange another 24 EEG seeing that our last one was done in October 2006. These are being arranged.
December also brought my 30th birthday. I have to say that it has been the ONLY birthday that kinda brought me down a little bit. I had a wonderful surprise from my brother and his fiance. Since my birthday was on a Friday it worked out perfectly and they had taken J and I to Toronto to see Dirty Dancing! It was really good and I have always loved that movie. What girl doesn’t? I have to tell you though that the guy that played Swayze was FAR from good looking which was kind of a bummer when he is the MAIN interest of the movie! hahaha
Grandma and grandpa S came down on the Saturday (13th). We had a really great visit and we went out for dinner for our birthdays. Daddy was unsure about going out for dinner because A usually does not like to sit still but he was SO well behaved!!! And as a bonus we got to keep the dinner that grandma had brought down for the next night! haha
Daddy also turned 31 in December. A and I had baked him a cake and we celebrated his turning another year older with just the three of us.
December 23rd grandma and grandpa C were here early in the morning to pick A and I up to head to Sick Kids for Ashton’s ECG and upper GI. We left here about 6:30am for the 9am appointment and ended up getting there about an hour early. Worked out well though as we were able to have a coffee and sit a bit. It is always nice to get there and not feel so rushed. A had some bloodwork done first and did really well. I can never get over how well the people that work in the clinic there do with the kids.
9am we were upstairs for his ECG. He was a little worked up at first but I think that is normal seeing that normally he is being poked and prodded and probably is worrying about that. After the ECG we headed to radiology to have his upper GI. Upon entering the room A started to get very upset. This is the same room that he had ph probes placed and I know that he remembers that. As soon as I laid him on the table he was so upset crying and going off colour. The doctor placed 60mls of fluid into his g tube and we waited. We could see his tummy full and I was just waiting for the reflux to show. We would go from his back to his side for about five minutes and nothing. The doctor then said that he was going to put in another 60mls. I was a bit hesitant as I only feed A 50mls every twenty minutes during the day for his feeds but he said he wanted to push him a little. So he did so. STILL NO REFLUX!!!! We waited about ten minutes and NOTHING. A was still very upset but mommy was SO happy! I was just about jumping up and down and the doctor said “these tests are only a moment in time and you have to remember that.” Yes, I know but trust me, I know my kid. He was so worked up, gagging, crying and laying down and NO reflux. If he was going to reflux it would have been THEN. See, it pays off to do research and demand a certain surgeon do the fundoplication, because he obviously did it PERFECT!!!!
A however was not emptying AT ALL while we were in the test so the doctor asked up to come back in an hour to have a picture down to see how things were moving. I’ll tell you, I was a bit nervous with it being the 23rd thinking that possibly he would be admitted for obstruction!
We all went to eat lunch and walk around while waiting for the hour to pass. Upon having the x-ray done all was good and we could head home.
Christmas Eve A was in bed at 11pm and daddy and I shortly followed. Daddy is still a big kid at Christmas time and was up about five times throughout the night until 7am when he finally got out of bed! haha I was up soon after and A was up at 8am.
It was pretty cool this Christmas because A was SO into the presents and had lots of fun. Last year I taped the entire morning here and he kinda just sat there. Well this year all he did was talk and talk and talk!!!! He would get so excited for a present no matter who was opening it. Really neat to see. Maybe next year he will understand the whole Santa thing? I can’t wait! He does know what “Christmas Tree” is and even if I say it now he smiles like crazy. Such an amazing little man! Cujo and his new bone Santa brought for him…
We headed over to grandma and grandpa C’s at about 11am. Uncle S, Aunty A and Aunt Shorty were also there. We all got spoiled and had a great time. Aunty A made me this amazing gift this year and I wish I had a picture of it to show you but I don’t. It is the word “Miracle” cut out in wood letters and she put pictures and decorated them. It of course made me cry and I can’t wait to get it up!!!
Boxing day we headed down to Chatham to visit with grandma and grandpa S and Aunt K. Great grandma and grandpa came over to visit as well when we got there. A decided to nap later in the day so poor daddy had to wait to do gifts! haha
Once again we were all spoiled!!! A got the new Elmo which is pretty neat because when I would take him in stores that had it I would always play it. In the store it only says one line so now he KNOWS when that line is coming and starts smiling like crazy.
A in his cool new pajamas from grandma and grandpa S…
Saturday night grandma took over for A so daddy and I could go out to the bar and have a night out. It was lots of fun and A had a pretty good night for grandma which is always great!
We came home Monday evening and I took down our Christmas tree within the hour of being home. I know that old wives tales say it is bad luck to take the tree down before the New Year, however last year I left it up and we didn’t have the greatest of years so I thought I would try this! haha
New Years Eve we didn’t do anything. A was in bed at 11pm and daddy and I watched the New Years special. The minute after the ball dropped I was in bed! I have been SO tired lately and just have no energy at times to do anything.
Here is to 2009 and hopefully a GREAT year!!!!!
Well once again I have been slacking. Things around here have not been that good and I am just tired, stressed and not handling things well right now.
I will start with some great news though. A was back to see the amazing Dr.Wiggins just over a week ago. And if you remember right, last time we were there I was told that A was not using his right eye to see at all. Which totally made sense as to why he was better with toys on his left. Well of course my little man is amazing and he is now using it to see!!!! Dr.Wiggins was very impressed with this as six months is not a very long time to start doing this and see a change. Would you expect anything less from A?!
I am sad to say though that A continues with having issues at night and his blue spells. This has been going on since November 6th. NOTHING has changed. He has also had a couple more of the “episodes” that are new that I was talking about a few weeks ago. He had one two nights ago on me and I was able to capture the end of it on video and he also had one last night at 3am. He was on the monitor as he was in bed and his sats went as low as 26. Heart rate didn’t go down and maybe elevated a little. Funny because I always forget to look at his heart rate and remember it as I am so focused on what he is doing and how blue he is. I did notice last night that he bites down VERY hard while doing these.
I am so stressed by all of what is going on and don’t really know how much more of it I can take. I am having a really hard time understanding why things just seem to be getting worse. I had to deep suction twice last night and this is something that I don’t normally EVER have to do. I hate doing it too which makes it worse. He cries as soon as he sees the machine and I get all teary eyed doing it because it is just not fair that he has to deal with this crap.
I am afraid this post is pretty negative but I just need to get it all out. It always seems to help me.
So we saw A’s doctor on Tuesday as he had to get his flu shot. I told him how things are not any better since our admission to the hospital on November 10th and that something is going on. He told me that he didn’t know what else to say or do. Well figure it the *$%^ out! No I didn’t say that but that is how I feel. He then went on to add that he feels it is just A holding his breath and told me that I need not worry about what he is doing. Really?! Need not worry? I am the one who deals with A 24/7. I am the one that watches him struggle every friggin day. I am the one that has to stimulate him, blow in his face, try to stay calm when he completely stops breathing. I am the one that has to think in that second of whether or not to call 911. I am the one that cries after every episode because it scares the crap out of me. I am the one who screams why why why. How do I not worry?! These are NEW episodes. They are DIFFERENT. And they are in no way breath holding. Besides that was the explanation for the last episodes and these are different. But for real. It is all just a bunch of bull.
I thought that I figured things out the other day when I noticed that the Nutren 1.5 that he has been getting (one can a day) along with two cans of Nutren Jr w/fibre was expired. This was on the 27th that I figured it out. He had 22 cans of the expired formula which would take us back to November 5th. Perfect timing as things started to go off the night of the 6th. Well after some discussion with the pharmacy, Nestle and other moms this probably is not the reason. Why? Because when making expiry dates they are extremely generous as well as the fact that no bacteria can get into the can. They were dated March 2008. They never smelled bad. The only thing that would likely happen is that the nutritional content goes down. He has been getting GOOD stuff for three nights and nothing has changed. If anything these past three nights have been worse.
Mommy instinct tells me that his tummy is bothering him. It is what is waking him up. It is what is keeping him up crying and fussing at night. But what do I know? That is the feeling I get when I tell doctors what is going on. I will be once again emailing his team at Sick Kids. I have to go into clinic to discuss anything which is fine. They need to check out his belly and they need to order an EEG. Not just a 15 minute one either. And I would also like a ph probe done as I really notice a lot of reflux lately so I am curious as to what is going on there. I don’t think this is too much to ask from a mom that is frustrated angry and tired.
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???
Not too much new going on around here. Mommy and daddy have both been sick with sore throats and head colds but thank goodness that A has not got it! *knock on wood*
I am pretty nervous when it comes to getting sick now that he had his last ICU stay on the vent. I pretty much wipe down everything in our house with lysol wipes like three times a day as well as spraying Lysol.
Still having big time issues with the seating clinic and not being to find seating that works for him. It is SOOOO frustrating!!!! We are now trialing our second wheelchair which is called Kid Rock. It is pretty neat as it is the only chair that allows movement. Basically when A arches the chair moves with him up to a maximum of a 35 degree angle. To get out of it he has to use his stomach muscles to bring it back to sitting. Which I might add he can do!
Other than the same old things are good. We carved a pumpkin last night and daddy is looking forward to coming home from work today and getting dressed up with his little man. Those pics will follow!
I should also add that Stacy, a wonderful blogger who gets a lot of traffic on her site from all kinds of people (including doctors!) has posted a quest for help with Ashton and his spells. She was wanting to post it in the past however with my address and phone number it wasn’t really an option. Now that things are different she agreed. I am hoping that someone KNOWS what he is doing. You never know where answers may come from!
Sorry that it has been so long but things have been very busy around here (what else is new?!) and I have gone over my limit of pictures on my blog so I had to erase some older ones and will be buying some new space for more!
So whats new? Well A is still being A. I am on my way working back into the blended diet as I do not think that any of the foods were causing his issues. He still continues to have episodes of going off colour in the day and being fussy at night. Not sure what is going on at all. I have been chatting with the team at sick kids and I finally got an answer from them YESTERDAY of what the teams thoughts were on the video I had sent. Well she said that they feel it is the same thing he was doing inpatient only with teeth grinding and that mixed with breath holding makes things like this happen.
Well I emailed them back saying that what he is doing is NOTHING like what he was doing before at all. I also told her that I did not want to hear the saying “breath holding EVER again”. What A is doing is NOT breath holding and never has been. The doctors know my feelings on this. She also said they wanted to do botox again in his saliva glands. I am not for that at all either because it did not do anything the first go around. So anyways that is that….
I cannot wait to get this kid a new bed!!! I am getting so frustrated with how he moves so much at night and gets his legs and arms caught in the crib. Half of the reason I think he wakes up at night is because of this so in a month this little man is going to have a big boy bed!!
And now for some tear jerking exciting news! The other day his EI worker was here to play/work with him. At the end of every session she colours a picture with him. She gets the paper ready and then will hold up two markers and make him choose what one he wants. Then she will put it in his hand and hold his wrist while he moves it around. Normally he isn’t even paying attention to the colouring at all and is trying to pull the marker back to put it in his mouth. Well this time he coloured ALL BY HIMSELF! She wasn’t even holding his hand AT ALL! I grabbed my camera and snapped some pictures and then I grabbed the video camera and taped him. He is SO amazing!
Well a year ago today was when A heard for the first time!!!! I cannot believe that a year has gone by already because it feels like yesterday that we were all really excited about getting him “turned on”. The cochlear implant is the best thing that has been done for him yet. I am so amazed at how well he has done and how he hears EVERYTHING!!!! I am still getting him to work on saying mama but it hasn’t happened yet! LOL
Some more exciting news about A. He got his first haircut two days ago!!! Mommy finally gave in and cut it off. Daddy and I did it together and I have to say that I am VERY happy with the results!!! He looks so much older and more like a little man.
That is about all of the exciting news around here. A continues with his episodes at night and continues with turning blue during the day. I happy to say that FINALLY the team at Sick Kids replied to my email that I sent two weeks ago Friday. They are concerned and want to see him in clinic. I emailed them back asking what their thoughts were and what the plan was because I wasn’t going to waste my time going to Toronto so that we could sit there and look at each other. As well I told her that I wanted the date for his next sleep study, ENT followup and genetics.
Now, just needing all you guys to pray again. Auntie A (my brothers fiance) is in ICU right now and is very sick. She was diagnosed about 8-10 weeks ago with cardiomyopathy with a heart function of 20. Well she is now at 17 and is having a tough time. I’ll tell you though, her spirit is AMAZING!!!! She is only 25 years old and needs all the prayers she can get right now. Thanks everyone.
We headed to grandma and grandpa S’s Saturday night after daddy got home from work and didn’t end up getting there until after midnight. A had finally passed out about a half hour before getting there and when I took him out of his car seat and put him on the bed inside he didn’t even budge…
Sunday morning…the day of the bridal shower. Daddy went golfing with the guys and A stayed with the girls to open gifts and have fun! (Notice his shirt?)
Liam smiling for the camera…
Aunt Shorty taking a nap with A. He had kind of a rough day on Sunday which put a damper on my day for sure. He has been off for about a week but Sunday he was just NOT happy. A ton of times going off colour and just fussy.
Daddy and I got SO much more great stuff and it was great to have so many people that we care about there to celebrate our upcoming day with us!!!
Wes…an amazing kid!!! I have said it before, but he is what ALL kids need to be like. If everyone was like him then kids like A wouldn’t have to worry about trying to fit into this world because it wouldn’t be an issue. He is SO great with him and the best part of it, is that it doesn’t even matter that A is different!
We came home on Monday night pretty late but the car ride home was good and A was a good boy.
Last night we took A to the fireworks for Canada Day. He was very unhappy and I was ready to pack up and leave because he was so upset and going off colour so much but daddy took him and walked around until it was dark enough for the fireworks. We met up with Shelly who is A’s worker in the summer and her boyfriend Jeremy and their two kids.
As soon as the fireworks came on Ashton was is awe and wouldn’t look away!
Well another week has gone by and we are getting so close to the wedding!!! I have been working on my speech this past week and boy I’ll tell you it is going to be VERY hard to read this in front of everyone! I read through it a couple of times as I keep working on it and adding to it and I start crying every single time. Oh well, that is me….emotional Shannon.
As for my little man, he has been keeping things interesting around here. A couple of mornings last week I awake to the sound of him grinding his teeth. I don’t have the monitor on yet I can hear him from his room making this awful sound. I didn’t really think much of it because he has done this in the past but never longer than a few minutes.
Well two night ago I awoke to him screaming and grinding his teeth so bad it was kind of freaking me out. For an hour I sat with him, tried to console him and get him to settle down. I would have to pick him up which is a big no no in this house with him, but it was the only way to eventually calm him. As well it is heartbreaking that he seems in so much pain.
So after about ten minutes of holding him he would settle and go to sleep. Then suddenly his eyes would fly open and he would start again. Once he was calm for a good five minutes I would place him back in bed and things would be fine. Then an hour or so later it would start again. I finally got out my video camera to tape what he was doing.
I have come to the conclusion that it isn’t night terrors. Anyone I have spoken to says that the kids are not aware of anything during these episodes, however he seems to be aware. I don’t think it is reflux as it is under control the best it can be. And besides that, he had such severe reflux for so long before that even the doctors couldn’t believe that he showed no outward symptoms when we realized how bad it was.
The day yesterday was awful. A was having little freak outs off and on and of course with his freak outs comes blue spells. I am just beyond frustrated with what this little guy has to go through!!!!! He is NEVER a grumpy kid so when he is I know something is up. I just wish he could tell me what it was. I ended up having a little cry fest with him wondering when WE are going to catch a break?!
I got so upset that I called his doctor and was told to bring him in. Well what I forgot was that I had no one to help out and pick us up. J had the van at work and the car seat was in the van. So I packed him up and went down to the rental office. I asked the landlord who is just sitting in the office all day if she would mind him sitting with her for about ten minutes while I took a cab to go get the van. She said no. I left the office crying and went to come back upstairs but A started freaking out because he thought we were going for a walk. So I went back down and decided to walk him to the doctors. What a bright idea in the heat?!
Anyhow, he checked A out. Throat, ears, tummy, temperature and all was fine. I showed him the video but he wasn’t too concerned. He said he knows many kiddos that are mentally handicapped that teeth grind. Okay, but A isn’t textbook. He laughed and said he knew that but didn’t think it was a big deal. I told him that I was worried that it could be some sort of seizure. He didn’t think so. Ugh!!!!!!!
So anyhow, last night was a bit better than the night before but it is way too odd to me. As well, A is having a lot of blue spells during the day which haven’t been happening for a good two months. Does it ever end?
If anyone thinks they may be able to help, let me know and I will send you the video to watch. Other moms opinions mean more to me than doctors.
Well we are waiting on daddy to get home to head to Chatham for the weekend to have our wedding shower tomorrow! Hopefully it is nice out and the rain holds off so we can have some swimming time!
A woke up this morning and I put him on the couch while I went to put on my coffee. This is what I found when I was done. He stayed this way for an hour! Isn’t he just so friggin cute?!
Well things around here are getting pretty busy/crazy. We have so many exciting things going on I thought I would update today. Well first, I am excited that I got my blender last week for A’s food. He is not on any formula now during the day but just blended REAL food! The past two days have been kind of off for him so I don’t really know if it is the food or him not feeling the greatest. I am thinking it is the oatmeal in the food so I am taking that out today and see how it goes. He has been having a lot of blue episodes and just not acting himself. He is fine in the morning, has great naps and then wakes up and is just very upset with tears and all. I cannot tell what is bothering him, but something sure is.
Now these next two pictures are hilarious. I was feeding him his food which I do in 50ml intervals and I only have small 10ml syringes left. So I am pushing in the food and the syringe flies off and it sprayed all over him and everything around. I must have laughed for like ten minutes straight. His face was initially priceless and once I laughed he started.
Now for exciting news, we FINALLY got his pony!!!! He does SO SO SO much better than when we trialed it last August! Yes, it took almost ONE friggin year to get! I cannot wait until we move and he has tons of space to move around!!!
We headed to Chatham for a surprise visit with grandma and grandpa S on Sunday. They were both very surprised to see us and we had a great time! The weather was great so we were able to spend lots of time outside. Great grandma and great grandpa also came to see us and had dinner on Monday.
A had lots of fun spending time outside in the nice weather. It is so nice to finally be able to get out and enjoy being outside instead of hanging around inside all of the time!
Monday afternoon he did have a pretty scary beginning of one of his big episodes that he hasn’t had since calling 911 in November. He was just waking from a nap and went into the beginning, dropping to the 30s and pulling his arms up. However just as I was about to yell to grandpa (daddy and grandma were out) to call 911 he took a breath. I did have to suction a bit but within two minutes he was fine. I told him that he is not allowed to scare me like that anymore!!!!
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 our follow up was yesterday with complex care. I have to say that I didn’t find it very helpful but I kind of expected that. Bascially I told him how frustrated I have been with how A is doing. I took my notes and showed him how much he has been vomiting. He seemed a bit concerned about that so we are doing continuous feeds throughout the night and three small feeds during the day to see if that helps. If not then we will do an upper GI to see if he is refluxing past his fundo (which I think it not functioning) and then switch out to a gj tube again.
Last night was our first night of continuous and we had a nurse here which was nice. He did okay until about 6am and she said he was gagging and definitely refluxing. That continuous ended at 8am and then at 11am he got his first of three small feeds for the day. He gagged through the whole thing turning off colour constantly. After the feed was done he threw up three times.
Sunday night when I put him to bed he went down to 14 and I was ready to freak right out. I can’t even tell you how stressful this has been since he has come home. I feel like I have aged at least ten years. Anyhow, I was so fed up with his shitty sats at night sleeping (88) that I put oxygen on him. Guess what? He satted 98 ALL night and slept great. So Monday night I did the same and it worked. Right now he is napping on the couch satting 82. So I have the oxygen in front of his face and he is 96.
I told the doctor about this as well and he seemed okay with it. Of course I don’t think it is my job to find out what works best for A. Especially when you are talking feeds and needing oxygen. He is only getting .5L so the doctor is okay with it. If he sats 100 I just turn him down as I don’t want him sitting at 100 because of his hypoxic drive.
After that appointment we went and he had some bloodwork done after his feed for genetics along with a urine sample. He did very well and I can never get over how awesome these people are there that take blood!!!!
I also just found out that the approval for his DNA to go to the States just went through so we have at least a three month wait for that.
Tonight is exciting for all of us. In January I was contacted by a gentleman who wanted to grant A a wish. Because of being in hospital we were not able to do anything. He is finally coming tonight to meet A to see what he wants to wish for! He also told me that he has a large sum of money for J and I to catch up on things since spending so much time in hospital. How awesome is this!? I still have NO idea what to wish for….maybe he will have some great ideas!
Well I cannot wait to go to our follow up appointment early next week. Since my last update I have been ready to pull my hair out. Tuesday went pretty good for him but he did have a big episode at 2pm just before his nap. And then from 6-10pm he was not happy. Wednesday he was up by 9am after a very restless night but he was happy. He had another big episode at 2:30pm during his crappy nap. He got very congested to the point I had to suction. At 7:30pm he vomited which is a half hour after his feed ended. At 8:30pm he had a pretty big blue spell where you knew he was refluxing and couldn’t catch his breath. At 11:30pm the nurse put him to bed and he had another vomit with a desat to 38. Thursday…he was fussy for pretty much his whole feed from 6-7am. At 3:30 he had an episode with huge burps. When I opened his tube to vent him 20mls came out immediately. 6pm his feed started and by the time it was over at 7pm he had vomited three times. Friday…up at 10am after another restless night and pretty grumpy. Back to sleep by 12pm. After his 2pm feed there was tons of gagging episodes and crying. 5-6pm gagging almost constant. This was BEFORE a feed. Feed on at 6pm and within ten minutes he had the hiccups and more gagging. 7:40pm he vomited FOUR times and LARGE amounts. My guess is that it was pretty much the whole feed of 180mls. Feed on at 10:30pm-11:15pm and then vomit at midnight. Last night…another crappy night. Up at 9:30pm. 10am-11am feed CONSTANTLY going off colour, crying and fussing. 6pm feed TONS of refluxing/swallowing/gagging. It is now 11:30pm and nothing since his feed ended at 11pm. Knock on wood.
To top this all off at night and at nap times he is satting at 88. He was not even doing this in hospital. His baseline is typically 94-96. The odd time he comes up and sits at 91 but not often. It is driving me bonkers and I have a hard time sleeping knowing he is sitting at 88. There are times that he sits in the 70s too for at least ten minutes. Now I know they say not to focus on numbers but when this is not normal it is hard not to.
This past week has made me realize that I probably just wasted 88 days at the hospital for absolutely no reason. I still cannot get over the guilt I feel for seeming to make A worse. It sucks.
So that is why I am ready to pull my hair out. These friggin doctors need to listen to me when I tell them that he is STILL refluxing. He is miserable and very hard to keep happy. It is at the point where I am scared to feed him. Scared of him gagging/choking. And pissed off that he has to suffer through all this crap when he doesn’t need to. IF and only IF they would listen!!!!!! If you wonder how I remember all of the above it is because I have been keeping detailed notes to shove in their faces next week.
Good news…we have a new member of the family. We picked her up on Thursday night. She is a 7 week old 4lb jack russell crossed with a pug. They are called jugs. We decided on her name tonight which is Mady. She LOVES A and can’t get enough of him. A, well I am not too sure what he thinks. Probably tired of the kisses LOL.
I can hardly believe that we have been here for 13 weeks. I was worried about being admitted in the beginning for a couple never imagining what was to lie ahead.
Sorry that it has been so long since I have posted but I have been pretty down lately. A had his botox done on Tuesday March 26th…9 days ago. I have to say that I very disappointed since then. There is absolutely NO change in his saliva production. Well in a good way. He has more. And ever since having the botox he has this nasty cough and a TON of chest congestion. To the point where we have needed to suction him at night so he isn’t satting in the 70s while sleeping. The doctor who did the botox said it could take up to 12days but I can’t imagine that in three days there is going to be a miraculous outcome.
His episodes also started to happen again on Sunday during his nap. Yesterday was an hour long. The doctor was in here the whole time it was going on and I thought that I was going to lose it. I am so emotionally drained. I cried so much yesterday that I still have a headache today. I was so mad and frustrated. I laid him on his bed and just yelled that I can’t do this anymore. The nurse came over and hugged me very tight and told me that it wasn’t my fault. That I was doing what I need to do. And most of all, she told me that yes, it wasn’t fair. She is awesome. I just don’t understand why everything that we do just seems to complicate things. This was not supposed to happen after botox but once again A has other plans. This wasn’t even one of the risks or rare side effects!!!
At the end of his episode yesterday I told the doctor that I wanted to leave. I just want to go home. She told me that we could go by the end of the week because she is going off service so it would work well for her. So after some thinking I have decided that I might just wait to meet this new doctor on Monday. New eyes never hurt. And I figure I have been here so long already, that what the heck will another week hurt?
Then the patient rep that embarrassed me in the team meeting way back had the nerve to come in here yesterday. I was emotional the entire day even talking and he started to get all nice with me. Telling me that he can’t believe we are still here. How he can’t imagine how hard this is on me. Then the wrong line he said….I know how you feel. Really? You have a child that has been in hospital for 13 weeks with no answers? A child that goes blue too many times a day? I don’t think so. Of course I didn’t say this to him, but I did tell him that he didn’t know how it felt. That he goes home at the end of the day and can forget about what goes on here. It felt good.
On an up note, grandma and grandpa S came down on Saturday and stayed until Monday afternoon. J and his dad went to a Leaf game so his mom and I went and saw the show We Will Rock You. We had dinner first and then met up at the Hard Rock afterwards. It was so nice to get out and have fun. Plus I got to sleep in a real bed for three nights in a row at the hotel! Social work got Jeff and I one for the Friday night and then we stayed with his parents the next two nights.
So it looks like we will be home soon. The saddest part of this for me is that we are leaving without any much needed and wanted answers. Unless of course this next doctor is Dr. House?!
Well we have had an interesting few days around here. Wednesday night the night nurse was a new one which I absolutely cannot stand when there are a bunch on that DO know him. This nurse had come to help out for the night because of short staff, and she usually works in the critical care and NICU. I thought okay, well she has more experience than others….what could go wrong? Well for starters she was not friendly at all and didn’t do any vital signs until after 11pm. J and I had left for about fifteen minutes at about 10:30pm and we came back into the room with A in the crib and three nurses standing around him. They had the oxygen blasting in his face and the suction going. I looked up at the monitor and he was in the 20s and I immediately told them to get rid of the oxygen. The nurse looks at me and tells me that they need it because he is satting so low. I then tell her that he can’t have oxygen and that it makes him worse. She was not told this on handover. Ugh! Then the most shocking news. She said he had thrown up! WHAT?! Sure enough his shirt was covered in vomit and he was NOT happy. It took me a good ten minutes to settle him down. I asked what he was doing and she said nothing…he was just sitting in his chair watching TV. Well the parents next to me told me that she was bouncing him pretty rough in his chair and then he gagged and threw up. I was livid. I went right out to the nurses station, waited for the charge nurse and spoke with her. She was ready to cry because she was so stressed out from her shift already. Anyways she said she couldn’t change the jobs because this nurse helping out specifically requested to have babies or she wasn’t coming to work. A isn’t a baby I said…he is almost three. Closest thing I was told. So I settled down and she agreed to put A on her pager for the night.
I then asked our nurse to page the on call doctor as I was freaking out that A had thrown up. He came to talk to me but it was really a waste of time. That is what sucks about things happening on the weekend around here!
Friday we had a little meeting with our complex care doctor and the social worker. We have finally come to the decision that A will be going home. I am not thrilled to be leaving here without answers, but I need to get over it I guess. This is VERY hard for me to accept. They are calling my case manager and getting her to come in for a meeting. They want me to have more nursing than just two nights a week. I told them how home care nursing just isn’t the same so they will be getting nurses in here to train that I will have at home. I will also be having a monitor for him as well. Genetics will follow up with us on an out patient basis. I am not quite sure when we will be going home but probably within the next couple of weeks. We were also told that the chest team wants a chest x-ray and an echo done on A every six months after we leave. I will be talking to chest on Monday about everything because they really thought that his feeds were related to his desats but we found out with the probe that there is no correlation at all. Should be interesting to see what they have to say about that. Maybe they will finally do a CT scan. Who knows.
Friday night. A’s feed finished at 11pm and two minutes later he looked funny. His sats dropped to the 70s and then he threw up. No gagging, no retching, just threw up. Probably about 30mls as well. I was so upset! I just don’t know how this is happening with a fundo that is tighter than usual!!!! The doctor on call came last night but he really couldn’t help me out much. He did say he totally understands why I am concerned and the regular team needs to know about this for sure on Monday. It was at this time that I found out that he had thrown up as well on Thursday night after I went to bed. I was never told in the morning when I asked how his night was.
Yesterday I also started A with some sweet potatoes mixed with his 6pm feed and some rice cereal mixed with all feeds. He is doing great so far and I can’t wait to get him to all blended food. I just wrote out a new chart today for his feeds. It took a while as you have to count all calories and water consumption.
Today A went down for a nap at 2pm and at 2:30pm woke up with gas and then went into one of his big spells that he has not had in a couple of days. The nurse on today was kinda freaked out because she hasn’t been with him in a while. He went as low as 8 and it lasted for about 25minutes for the whole episode. We both also noticed some strange staring spell during the episode. Ugh talk about a downer for the day!
I have been thinking today again about the botox in the saliva glands and think that I may end up doing that before we leave. I do notice a lot of secretions during these episodes as well as when he gags. We stopped the glyco the other day as I didn’t notice it helping so maybe I should just TRY the next step. I will be talking to the docs on Monday about it again.
Well I think that maybe, just maybe the doctors are getting their acts together. On Wednesday they came back and started to talk again about going home. I told them that if they made sure the discharge papers said that he was having cyanotic episodes then I would take him home. Well needless to say I didn’t see the doctor again until Thursday. They know that they cannot send a child home that isn’t stable.
I was also told by the doctor on Wednesday that one day soon I need to start advocating for A. I think I almost fell out of my chair. I asked if she was kidding and she said no. I said that from day one that is ALL that I have been doing. I haven’t stopped advocating! And as far as I am concerned I advocate WAY too much in my mind. I shouldn’t have to fight and fight to try and get answers for A. She then told me that doctors are always going to come in and want to do tests and that isn’t fair for me to continue to let this happen. She said at some point I need to start advocating that enough is enough. WHAT?! But no one wants to do tests. And then she told me that it isn’t fair that I am requesting all of these tests for him. In particular the probe that he is having done on Monday. She said it is unnecessary testing that I am willing to put him through. Now give me a break. The last thing I like to see is A having anything done. It is hard for me not to get emotional when they take blood! But I feel the probe IS necessary to see if he is refluxing … end of story.
After some more fighting about the echo cardiology finally (but reluctantly) agreed to do an echo. So that was done yesterday and from what I heard last there was nothing seen. This is wonderful news! Just another thing that I can rule out.
Genetics came up in conversation again and she didn’t feel that was necessary either. I was confused because I had another doctor mention that A could have some sort of genetic mutation. She told me that the next time that I was pregnant I could just have an amnio done to tell me if anything was wrong. I told her that I couldn’t do that. I already had one preemie and there wasn’t anything that I would EVER do to risk that again. She said if I had it done early enough then it would be okay. Ummmm NO!
Well guess what? Genetics is going to be doing a consult. They came up yesterday but will be coming back on Monday to speak to me.
I also told the doctor that I felt that if A was “typical” then they would be doing everything possible to try and figure out what was wrong with him. That if he wasn’t a preemie and didn’t have cerebral palsy they would figure it out. I really am getting the feeling that they look at him as TOO disabled. But A is my child and that doesn’t matter to me. He is my life and I will continue to fight for him as long as I have to. I think they are starting to realize this.
He continues to have episodes. It seems odd too that most times they are at 2pm and 10pm. I can’t seem to figure out what is going on at that point that would cause this to happen. Two nights ago he had one that really scared his nurse and she is a nurse that usually works in the ER. This says a lot to me. Today he had one for about thirty minutes where he didn’t come above 60. I just don’t know what to think about them. All I know is that they are very hard for me to deal with and I myself feel really scared at times.
Now for some long overdue pictures…
The new team of doctors said that there is no reason for A to be staying in hospital. No reason for what he is doing. They want to get us home. I got called into a meeting yesterday that I didn’t even know about and within five minutes I was crying. I just can’t stay strong anymore. I am way too emotional. I am worn out and I am frustrated. I just don’t get it.
The docs just came in about an hour ago and once again I was crying. They said that they would like us to go home on a “pass” and come back Monday for the ph probe that he will be having done. I asked how it was okay to send a child home doing what he is doing when it wasn’t okay for us to leave 9 weeks ago when we got here. How it is okay for him to sat 20s on and off throughout the day when 9 weeks ago it was only the 70s. I am beyond the point of understanding I think.
They told me that they don’t do anything for him here when he has these episodes. Yes this is true but that doesn’t make it OKAY! So they figure that I can just deal with it at home because I am here. They want him home on a monitor though. Nice that I came in here without this and now I will need one.
The past two nights he has had episodes where he actually needed stimulation. What if I don’t hear the monitor? What if he needs stimulation and I am not there to give it? I get to wake up to a dead child.
The episode two nights ago he was satting 15 when he required stimulation. One of my nurses was here and the doctor said that under 40 the monitor isn’t accurate. The nurse said that didn’t make sense…then the monitors should stop at 40. The doctor then said that it just isn’t accurate with numbers. Well the nurse said “so then he could have been 15 then.” Nothing to say to that. Nothing like seeing a child sleeping so peacefully, breathing, off colour and satting 15.
I told them that they haven’t done anything really. They haven’t proved that he isn’t still refluxing. I haven’t seen cardiology. I haven’t seen neurology. I haven’t seen genetics. They did a sleep study when he was requiring oxygen which isn’t typical. But how do you fight with doctors when they are the ones to make the decisions about what goes on? How do you make them see it your way?
I don’t know what else to say. Just thought I would update.
Well we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL