Well A is now 5 years old. We celebrated on the 13th with so many people! And thankfully the rain held off and it was a good day to be outside. I was really excited that his little girlfriend was able to make it. She has not been able to come to one of his birthdays yet as she was usually not well enough to attend. A big thanks to everyone who came out and made the day so special!
***Pics will be within the next couple days…still organizing***
In some SUPER DUPER exciting news about A….he has finally gained weight!!! Yep, you read that right. He is no longer the 25lbs that he has been since pretty much December of 2007.
After we received his biopsy results in April, I had told his dietician that IF they were negative I was going to a blended diet. Well guess what? The biopsies were negative so on April 30th I started him on just blended food. NO formula at all.
I had done the blended diet in the past, but I always used formula as the base for it. I could never understand why he still didn’t gain and on the blended diet group he seemed to be the only one still having issues. Well some great people there told me that they didn’t see a difference until they got rid of the formula completely.
So April 29th was his last day of that junk.
A is doing AMAZING on the blended diet. He gets rice milk, blueberries, green beans, peas, avocado, honey, half and half cream, whipping cream, hemp seeds, almond nut butter, applesauce, orange juice, yogurt, chicken or beef, oatmeal, ancient grain cereal, eggs….pretty much whatever works.
When he was on formula, the quickest that he could take food on his pump was at a rate of 160mls/hour. Now on the BD he can take 280mls/hour. I still can’t believe it.
So I assume you want to know his weight right?! Well the other morning he weighed in at 29lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I NEVER thought this child would grow!
And to make this BD even more exciting, I have now gone down on his prevacid to a dose that he has not been on since he was a year old! He is on 15mg right now and hopefully I will be able to take him off it completely soon. This child has NEVER not been on a reflux medication so this would be great in itself!
Some other great A news. He is now doing things that he has not done or didn’t do as much. In the past he used to roll over maybe a few times a month but it never seemed purposeful. Well he is a rolling machine. AT LEAST give times a day! He is also learning with his PT and OT to be in a position on all fours and doing most of the work himself. Yes, thank you again tracheostomy! 🙂
In some not so exciting news, school. I again was at the school last week to meet with everyone involved. It was the first meeting at the school that he will be going to. The principal absolutely rocks and I love that he is so genuine about wanting to have A at his school.
Every meeting goes fine until we get to the nursing issue. I hate hate hate the fact that he even has to have a nurse with him at school. But because of the trach we do not have a choice. However all of you know that have spent so much time in hospital that just because you are a nurse doesn’t really mean much.
Sure, when you are new to the hospital system you usually think of a nurse as a nurse. Well not me. I have had SO many issues with nurses over the years that I have learned that you can have the schooling but it doesn’t mean that you should be allowed to be a nurse.
Well my nursing agency just seems to make this really difficult for me. I am not getting the nurse that I requested (after they were all for it), but instead they have gone and hired a nurse that she thinks will be wonderful. My view….I will believe it when I see it.
So once I got over the fact that she had hired a nurse specifically for A I asked when they would be starting. I really think that anyone that is going to be working with A without me around needs A LOT of time to get to know him. He is not an easy child to get to know and he can make things difficult.
I was told that the nurse could do Monday, Wednesday and Fridays for six hour shifts. Starting end of July. This would go until October when he would then be entering the school system. Okay, perfect.
Well two days later I get a call from my case manager. She never approved that. And in the big picture, she can’t.
I am sorry, but what the hell is this nursing agency thinking?! This is just not okay. You should not tell a parent something until you know that it is something that is going to work FOR SURE.
This lady I deal with does not impress me at all. Has not impressed me since the night I met her. (See, I do read people well!) So needless to say I called to ask her what the heck to do. One month is NOT long enough at all for a nurse to come in here and learn to be with A. “But she is an RN”……for crying out loud, THAT MEANS NOTHING!!!!!!!!!! Anyone can go to school and get “training” but that doesn’t mean when you come to do it on an actual person that it is easy! And especially with a child that has such severe cyanotic episodes.
Anyways, I am thrilled beyond belief to say this. We met his school nurse the other night and she is perfect! I have been VERY good with feeling people out and I knew the minute I saw her that this would be a great thing! She really reminds me of Ashton’s primary nurse from the NICU which is kinda funny but I am just soooo excited about this!!!!!
She just finished nursing school last May and is currently working in our home hospital on the surgical floor. However she just did a mission trip and realized when she came back that she wants to work with children. When she saw the ad for a school nurse needed for a child with special needs she applied right away.
The young thing really freaked me out at first but then I got thinking. The young ones are still learning. They are not set in their ways. And I think will be more fun for A.
She has never worked with a child with special needs, let alone one that has a feeding tube and a trach. She will be doing her trach training with A’s RT on July 8th and hopefully will start coming here on the 26th of July. We just have to figure out the private nursing thing.
I was very clear with her about what we want and what we don’t want. I don’t want a perfectionist. I don’t want a nurse that is TOTALLY by the book. I don’t want a nurse that is all about his medical needs and so focused on them that she cannot enjoy him.
Anyhow, I think this is going to be just great!!!!!!!!!!!!! She definitely has a lot to learn with A but she did say before she left that she is very excited to do her training, to learn about A’s history and get to know him. I just know she is going to fall in love with my little guy and they will be a great team.
Five years ago today A came into this world at only 24 weeks. I remember it like yesterday. I remember how scared I was. How oblivious I was to what was happening. I remember my midwife checking me and looking at me with sadness in her eyes telling me that she was sorry, but it looked like I would be giving birth that day. Of course I had NO idea that at only 24 weeks a baby could survive. I cried. My mom cried. I thought I would be saying goodbye to my baby. I remember seeing A for the first time. The love that I felt was just incredible. I never knew that a love like this was possible.
Since that day five years ago my little man has proved over and over how he has an amazing strength and fight in him. There are many times that he has defied the odds and survived. Many times we were told that he wasn’t going to make it, and he has.
I remember one time in particular, he was about a month old and I walked into the NICU and there were many people around his bed. His main doctor looked over at me as I washed my hands and just shook his head. My heart was pounding. The tears started to come. I knew it wasn’t good. A was very sick. His kidneys were shutting down. A was doing some “weird” things that they had never seen before. I was told that there was basically no hope that he would recover because of how sick he was. I sat beside that bed and prayed. Around 10pm that night he was settled and stable so I went back over to the Ronald McDonald around midnight to get some sleep. They would call if there was ANYTHING.
I never got a call. I went in the next morning and again his doctor was at his bedside. Only him though. When I walked over to him he was shaking his head again. This time in amazement. A was already a lot better than he was. My boy. My tough tough boy.
This child has been through so much. 227 days in the NICU. Hernia surgery, g tube surgery, countless pokes, IVs, antibiotics, scopes. Kidney failure, domperidone toxicity, severe dystonia, group B strep, sepsis, spinal taps, catheters, code blues.
Only home five days before being readmitted and ending up in the PICU on a vent. GJ tube surgery, CT scans, PIC lines, cut downs. Diagnosis of cerebral palsy, severe reflux, being legally blind, profoundly deaf. MRIs. Cochlear implant surgery.
Many hospital stays full of tests.
88 days in Sick Kids to try and figure out his “blue spells.” Ph probes, sleep studies, bronchoscopies, lung wash, fundoplication surgery, hiatal hernia repair. Helicopter ride after being intubated and in respiratory failure.
Skin biopsies. Muscle biopsies.
Surviving basically being on his death bed here at home as I cared for him. Holding him during the night crying my eyes out telling him that he needs to breathe. Begging him to breathe. Telling him I love him and how sorry I am for what he goes through. Telling him I try to get help but no one does anything. Knowing that he is TRYING to breathe but he is struggling SO much because he is so sick. Wondering if he is going to take his last breath while I hold him in my arms.
Struggling through those exact times where I know he needed help but not getting any. Laying side by side on the couch for two weeks as I make sure he has enough oxygen, doing deep suctioning, breathing treatments, watching his turn blue countless times. Holding him, crying, being beyond tired. Feeling his body stop moving countless times as he survives yet another blue spell. Almost begging his doctor to admit him but not being done.
Going into ICU for a trial of bipap to help with his severe sleep apnea. Ending up with a tracheostomy.
AFTER ALL OF THIS, HE IS HERE. HE IS ALIVE. HE IS MY LITTLE MAN.
Despite his tough life, despite his challenges A is amazing. He is happy. He is loving. He is determined. He is strong. He is a fighter. He loves life. He has taught me so much. It is him I can thank for the person that I am today. I cannot even imagine what my life would be like without him in it. Sure there are times that I wish he was running around and doing what a “typical” five year old would do. Sure there are times I wonder why on Earth he goes through what he does.
But in the grand scheme of things, he is perfect the way he is.
If he was not born early, if he had not gone through what he has in his life, I would definitely not be the woman I am today. God definitely has a plan for us and so far the ride has been bumpy but it has also been full of happiness and joy. Learning and love.
He has stengthened the love, devotion and relationship that J and I have. The midwife told me when A was born “June 10th….that means he is a gemini….an air/wind sign. You and J are both Sags….fire signs. The wind always makes the fire stronger.” I will NEVER forget that. That was about five minutes after A was born. Thank you Martha!
I am one of the luckiest moms in the world. I was chosen for this path and I know that God made the right choice when he gave A to me.
Thank you A for being the child you are. Thank you for your smiles, your cuddles, your laughs. Thank you for being so strong.
And don’t ever forget. I promised you the day you were born that I would fight for you. I have fought and will continue to do so as long as I live.
The happiest little boy that I know.
Happy 5th birthday monkey.
I love you.
So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!
Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
Just a quick post to let you know that we are HOME!!!!!!!!!!!!!!!!!!! Soooo happy to be here and can’t wait to start our new journey with A! He is breathing SO much better, sleeping awesome and NOT desatting at night. I will update in the next few days with LOTS of pictures.
A big thanks to all of you for the thoughts and prayers over the last 40 days. It means alot!
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 A went into surgery last night for his tracheostomy about 6:30pm and at 8pm we got word from his ENT that all went wonderful. We were able to see him in the PCCU very shortly after. He is on a lot of medications for sedation however he is NOT sleeping.
Right now he is currently on the ventilator (life support) but is taking some breaths on his own above the machine. They want to keep him very sedated and pretty still for another 24 hours before they even think of weaning him off the meds and the vent.
I have a lot of emotions right now but so far I feel okay with what has gone on. It was a VERY tough decision and I hope that I never ever have to make one like this ever again in my life!!!!
Here is my tough little guy….
Keep the prayers coming….we have a LONG road ahead of us. He has been a very good boy though for mommy so far on her birthday which is the best birthday present EVER!!!!
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 so much has happened in our three days here that I am just amazed. We came in Thursday night and A was SUPER happy to be here. What a kid! They did the bipap the first night but it did not go as well as they would have hoped so they did give him some sedation. He did about three hours on it the first night. It was great for me, because the respiratory therapist on with him for the past three nights knows him very well.
Friday I came in and they had already done an echo and we headed down to do an upper GI to check his fundo. All was great there. No results as of yet from the echo.
He also started with a fever on Friday and still has it today. So yesterday they did some blood cultures and a urine culture, results will be in tomorrow.
Last night on the bipap they gave him more sedation than the first two nights and he did about 5.5 hours on the bipap with ZERO desats!!! I am thrilled!
He was supposed to go in today for a CT scan of his chest with contrast however it is pretty crazy in the PICU today so they are holding off on that until tomorrow. I had a great meeting with one of the doctors yesterday and he feels that this CT will possibly help A’s respirologist maybe get some more insight. They were a bit iffy about doing it because they have to give him an IV but I told them that I was willing to let them do that if they felt this CT would help them. This doctor has done NOTHING but prove himself to me and I have total faith in belief that he just may be THE one to finally figure A out.
Please keep up the good thoughts and prayers. A is definitely in the right place to be sick but we didn’t come in for that! The doctor two nights ago said to me “this was supposed to be a simple admission for bipap but yet it seems so complex.” That is my boy!
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.
JUST A QUICK REMINDER TO ANYONE READING THIS BLOG. DO NOT UNDER ANY CIRCUMSTANCES LINK TO YOUR PAGE. UNFORTUNATELY THERE ARE PEOPLE IN THIS WORLD WHO HAVE NOTHING BETTER TO DO WITH THEIR TIME THAN HARASS ME AND MY FAMILY AND I AM HOPING TO KEEP THIS WEBSITE OPEN AS LONG AS IT IS NOT BEING BOTHERED.
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???
Never in a million years when I thought about having kids would I have thought that it would happen to me. That is what most pregnant moms think. “It won’t happen to me.” But it can. Over 13 million babies are born premature throughout the world every single year.
A’s chance of survival when he was born (based on stats) was only 39%. I am sure that his was actually less because he never had time to get the steroids to help his lungs. From the time I got to the hospital here in town wondering what was happening, to the time I delivered at a hospital 45 minutes away was only about five hours.
A fought like I never knew such a small baby could fight. He is alive because of his fight. He is the strongest boy I know.
I never thought I would have to deal with another 24 weeker, but realized when I had H at 18 weeks 4 days that anything can happen. You just have to take the hands that you are dealt in life and try to learn from them. I have. I truly truly believe A was born to teach so many people things about life. And H, well I think he saved the life of another little boy.
I hope that one day soon I will be able to try again and not have the heartache of the NICU or the death of another child. I think we have had our fair share of crappy dealings in life and we can expect nothing but the best next go!
And today I think of all of the doctors and nurses who kept my boy alive. My biggest thanks and love goes to Dr. Shah, Dr. Sant’Anna, his primary nurse Danielle, DJ, Joyce, Marg….without all of the love and support you gave to A in his life I know he would not be here!
And my biggest thanks to A. You have taught me more than anyone could in a lifetime. You have made me slow down in life and enjoy things I never maybe would have.
You make me laugh. You make me cry. You are just the most perfect child and I am so blessed. Many pity me, pity us but they don’t know what they are missing out on. What you have taught us could not have been taught with a full term, healthy child.
You have made the love between daddy and I grow to heights I didn’t think love could go. I have never been so in love with someone as I am with him. And the love that he feels for me is just as equal.
You are the most amazing child and we love you with all of our hearts!
So it sure doesn’t feel like we are only 39 days away from Christmas. The weather this weekend was just gorgeous which was nice so that I could have A outside in his walker! I decided on Saturday to be brave and try to walk to the corner store. It is about a five minute walk normally, however it took A and I just over an hour to get there and back. Talk about a lot of work for him! It was really cute when we got to the corner because he KNEW where we were going and got SO excited. He was jumping and babbling away.
On the way back he was pretty much complaining the whole time. He knew that we were headed home and this is NOT where he wants to come when we are outside. I swear, this kid could live outside!
When we got inside he was SO soaking wet from all his hard work that he had to have a bath. I told him how proud I was of him and that it was a lot of hard work for him. He still wasn’t impressed to be inside.
On another note, I get a lot of people asking me why A goes to bed so late. He is usually in bed between 11:30pm and midnight. Sometimes a little after midnight. I have never really cared as J and I are both night people and I don’t see the point in putting a kid to bed when they aren’t tired.
Anyways, Friday was a long day for A. He was up early and then had all that excercise that is new to him. J and I had gone out for a bit Friday night and at one stop at a friend of his, we were out of the vehicle for about fifteen minutes. I looked in and guess who is sleeping? Yep, Mr.A. I couldn’t believe it. It was only 8pm and he NEVER falls asleep in the vehicle, let alone that early! As soon as we got back in to drive home he was awake. J did his breathing treatment at about 9:30pm and A fell asleep during that. Now there are a handful of times that this has happened during his treatment, however it is never at 9:30pm.
After his treatment was done, I changed his diaper, got him in his pajamas and took him up to bed. All of this without waking up. Very strange! So of course with J and I being night people, we didn’t go to bed until about midnight as usual.
Guess what time this little monkey was up?! 5am! YIKES. I left him in bed until 6am when he really started to complain. It was still dark out and I just couldn’t believe he was ready to go for the day. I brought him into my bed as daddy was leaving for work and just wanted another hours of sleep. A never comes to our bed so he thought it was just great. He was babbling away. Every time I opened my eyes he would laugh and get excited.
About 7:30am his feed was done so I got up and went to clean out the bag and when I went back up to get him, this is what I found.
I didn’t even bother going back to bed because when I normally do, he is up shortly after. Well he decided he wasn’t going to get up until 1pm!!! So, needless to say, this child will NEVER go to bed EVER again before 10pm! haha
Yesterday we had another great day. A was in a SUPER mood which was really nice for both J and I. We were going to take him to the parade but by the time we really were ready for the day it was too late so we decided instead to just have a family day. We put up our Christmas tree, however today is the day that A and I will decorate it. He just LOVES his Christmas tree. He was babbling away as I pulled it out of the box and was putting it together.
Last night we headed over to grandma and grandpa Cs house for dinner. Auntie A and Uncle S came too so that was nice. The last time we saw them they were still in Toronto General.
I took A’s walker over there so grandma and I took him for a little walk. He was having a hard time yesterday, but I think its because the road is bumpy so he can’t get that push. I KNOW in my heart that this is something that he will definitely get the hang of. I got word however that Kidwalk is redesigning their walker and the new one will be out in the beginning of 2010 so we will probably wait to see what they change about it. We will also be trying another walker next, but I don’t know how it will work as it doesn’t have as much support as this one. We will see, I never say never with A! He has proven so many people wrong in the past four years of his life, even me so I know that he is going to keep on surprising us with what he is able to do in life!
Keep up all the great work A, mommy is SOOOO proud of you!
Well another week has come to an end with no therapies or care workers for A. I have to say that I am quite enjoying it! Not getting A up out of bed in the morning so he is ready for them. Not having to rush out the door to get somewhere on time. Just being able to live life “normally” and do as we please.
We still have ten days until A gets his second dose of H1N1 so we are still pretty much in “hibernation” as to not expose him to any of those sick people who still think it is okay to go out into public places and pass on their germs.
Sunday we went down to Toronto to visit with Auntie A. We had not seen her since two days after her LVAD was placed. When we walked up the street to the hospital, she was sitting outside with Uncle S and grandma and grandpa C. She looked MUCH better than the last time that I had seen her. Every time she looks better. We walked around the hospital with her, which by the way is a fair distance for somebody who has just gone through what she has!
Grandma and grandpa C left and then we headed to go have dinner at Swiss Chalet. It was just across the street, so not too far. It is pretty scary leaving the “safety zone” of the hospital with all the gear that Auntie A now has. Uncle S also has a backpack that he wears with spare batteries for the LVAD if needed.
Monday A and I headed to Waterloo to see the amazing Dr. Wiggins again. He is an eye specialist that works with special needs kids. I am always super excited to go and see him with A.
So A has kinda confused another doctor. EVERY time that we have gone to see Dr. Wiggins, A’s acuity -sharpness, clarity in vision- he is at 20/200. Now of course with kids like A you cannot get them to read off the chart that we would. So they use these cards that have a picture on the top or the bottom of the card. The cards are grey and have an outline of say a duck on the top or bottom in white. They show them to A quickly and see if he looks in the right place for the picture. Once he stops, they know he is not seeing it.
So, like I was saying, normally he is 20/200 for his vision. The easiest way to explain this vision is that he can see only at 20 feet what a normal person can see at 200 feet. There are some complicated physics and optics to further explain it but this is the bottom line. 20/200 vision in each eye is the definition of legal blindness.
Well Monday he decided to show his acuity at 20/50! So this means that A has almost good enough vision to drive-as per Dr. Wiggins! haha Needless to say I was VERY confused by this. There is no real way to explain it though I guess as A cannot tell us what he is seeing and how. We will see Dr. Wiggins again in six months and see how A does then.
A still does have the problem with only using one eye at a time to see and his right eye really wanders. We spoke about surgery, however like he said, it is really only cosmetic at this point so that other people wouldn’t notice it. Sorry, no surgery for this boy to make him look better “cosmetically!” In my eyes he is perfect the way he is. And honestly I don’t think many even notice his eye wandering. I know even his dad doesn’t see what I am talking about!
Today my little man trialed the Kidwalk Gait Trainer.His PT was not a huge fan of it but I however really would like A to learn to use something like this to give him more freedom and ability to do things on his own. I have to tell you, that he LOVED it despite the fact that there are a few things that would have to be custom done for him to use it properly. I was amazed today looking at him in it, because it isn’t like a stander where you can tilt it back a bit. It is pretty much straight up so he really has to hold his head back. And he did this just fine!!! It has a bouncy mechanism on it so if he jumps he will go up and down. This is absolutely loved as well since this is something he likes to do when you hold him standing up.
After the sales rep and his PT left I decided to take him outside in it to see how he did. Daddy had just pulled in the driveway and as soon as he saw A moving in the walker he said “right on.” I think we both thought we were going to start crying. A was just as happy as could be in it because he definitely knew that HE was doing all of the work. We walked down to the mailbox to get the mail and back. I think this is something that he could really get the hang of and use it for his advantage.
It is supposed to be a gorgeous day tomorrow so we may just be out and about again! By the way, that first picture is when I opened the door to go outside….he was AMAZED. Nothing like seeing the world in a whole new way at 4.5 years old!
As for Auntie A news, she came home tonight! I talked to her not long ago and she was happy to be home. It has been a LONG 39 days for her being in hospital, and WOW what she has been through! Keep up all the prayers for her…she still has a very long road ahead of her but has proved every single day that she is up for the challenge!
So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
Well I happy to report that so far not having any workers/therapists coming in has been great. I wasn’t sure how A would react as he can get bored pretty quick with mommy. It has been nice so far not having to check my calander every single morning to see who is coming and at what time.
I received a call yesterday from my case manager about cancelling services and I really think that people JUST DON’T GET IT. I am doing this to protect A from getting H1N1 as best I can. I am not doing it just because I want to. I feel bad that he isn’t having the people come in that normally just come to play but I have to do what I have to do as his mom.
I look at how sick A was just this past little while and knowing that I was very afraid we were close to ending up in the ICU again over really just a “cold” I can’t even imagine what the H1N1 would do to him.
By the way, so much for me thinking I would be able to sleep the other night after getting my shot! WOW, my arm hurt so bad that I was not even able to sleep that night. It was absolutely crazy! Yesterday evening I started to feel “achy” all over as well and didn’t feel so hot however I did read that it is possible to get some flu like symptoms after receving this H1N1 vaccine.
I am off tonight with my good friend to go see the Michael Jackson tribute. Time for daddy and A to spend some good quality time together! Yep I am braving the crowds and we’ll see how I do. This H1N1 has been driving me insane because I am so nervous!
Yay I can finally sleep tonight! The past two nights for me have been awful because I am so darn nervous about this H1N1 flu going around. When daddy got done work today A and I went to pick him up so we could just head right over to the clinic. Grandma C met us over there too so that she could get hers.
The line up was absolutely INSANE to say the least. A lady out the front of the clinic told me the wait was almost four hours!! It started inside the school where you would get your paperwork done and went all of the way outside. When we got there I went over to the one guy working the line and told him that we could not wait in a 3.5 hour line with A. He came over to A and said he would be right back. We then were taken all the way to the front of the line so we could get in and then out. Awesome!!!
So needless to say I feel much better knowing that it is done and over with. Now we just wait the required two weeks until it is effective.
I called A’s one company that sends me his PSWs on Monday and Friday and left a message saying that I was suspending all of his services until he was fully covered for the H1N1. Late this afternoon they called me back and left a message saying “as long as he hasn’t had a fever for five days then the workers can come back in.” What??? I don’t think they listened very well to my message and instead think that A has H1N1.
Anyways, yesterday we had a visit from Grandma S for the day. A was a big show off in his stander for her and he did such an amazing job at holding his head up. At one point daddy had the stander straight up and he held that head up for a good fifteen minutes!
He is not liking being placed in the stander but as soon as he is up and standing he is great. I think it is because he HATES to be held down and I really have to hold his legs down tight to get the straps done up in front of his knees. Just a feeling that he isn’t used to and doesn’t like. His PT said that he would probably only do about fifteen minutes at a time without complaining but he is doing MUCH longer than that each time! I think yesterday he spent about one and a half hours standing up. Gives him a whole new view of the world really when you think about it. Such a nice change to be upright instead of sitting in his chair or laying on the floor! Go little man!!!!
This child just LOVES his daddy!!!!
Well we headed out to Mac yesterday so A could get his first H1N1 vaccine. He will need to get a second one in about three weeks and then immunity is not until two weeks after that. That means approximately the middle of December.
I have decided to suspend A’s services that he gets with the community until that time. And as well, anyone who comes in here that does NOT get the vaccine will not be allowed to visit. This has been a huge decision for me but with how sick he was two weeks ago I do not want to risk him getting H1N1 at all if I can.
So looks like A and mommy will be having a lot of time here by themselves. Gets him out of therapy for a while too! Should be a nice little break.
I went to the clinic here in town with J last night but unfortunately the police had shut it down because there were so many people there to get it. I thought I was going to cry because this is something that I really really want to avoid at all costs. I will be trying to call my doctor on Monday and see if there is any way he can get if for J and I.
When we got home yesterday a lady from Motion brought a stander for A to try out. He looks GREAT in it and I think he really loves it. We have not tried a stander with him for probably three years now. Back then he wasn’t too keen on the standing at all which is why we never did order one. But anyone that is around A knows that he loves to stand up now so this will be good for him.
We haven’t had many kids for Halloween tonight compared to last year. Here is my little man in his costume:
Carving his pumpkin with daddy….
Being silly earlier tonight…check out the shirt daddy got him at the concert the other night!
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 let me start off two weeks ago today. I got a call from A’s chest team saying that they believe that he just might have cystic fibrosis even though his sweat test that we did in March came back negative. WHY? Well because of the pseudomonas. And if he comes back negative for cystic fibrosis then they want to look into primary cilliary dyskenesia. So a lot of people have been saying “well at least they are doing what they should be now.” Yes, very true, BUT they are only looking into things now because of the pseudomonas. That’s it. I have been telling them for YEARS that they need to look closer at his lungs. In my mind it is the ONLY thing that they have not ruled out 100%.
Last Monday we headed to Sick Kids. We were told to not be late for our appointment as they would rebook us and that would be it. We have been waiting for this genetics appointment now for over a year. Anyhow we were there on time and placed into a room. A nurse had come in and took a little bit of information down about A and left telling us they would be right back. This was at about 1pm. At 2:30pm I went out and asked the man at the desk if we were forgot about. I mean for real, one and a half hours sitting in a room with a child that usually is napping at this time?? He told me the doctors were probably in the back room talking about A. Hmmmm well they didn’t know much yet, how could they be talking that in depth about him? That so wasn’t the case.
Guess what time we finally saw the doctor? 4:30pm!!!!! No apology, nothing! I was not too impressed and can’t believe that a doctors office can get THAT behind. Just not right at all for families to wait this long.
Anyways, we talked about A. He had read his files. Well some of them. He would need a year to read everything. He feels that something else is going on with Ashton but again just has no idea what or where to begin. One of the things that he was really hoping for was a new MRI. Unfortunately this is not going to happen as A has his cochlear implant and cannot have an MRI. The only way this would be possible would be to remove the implant, do the MRI and then replace the implant. And there is not a chance that I would do this to him!
So we left the appointment to head down to get a bunch of bloodwork done for this genetics doctor as well as the gentic bloodwork for the cystic fibrosis. When we go back to this doctor in 6-12months we will discuss the results as well as talk about doing biopsies and a spinal tap to check for neurotransmitters. Nothing like moving slow eh?
In other news. We had H’s service here on Sunday, Mothers Day. It was perfect for us and I feel much more at ease with everything. I definitely needed to do it to help me heal. To ease the pain. To put him to rest. We did a balloon release for him at the end of the service which was really awesome. I had pictures laminated of him and we attached one to the balloons before they were sent off. I also mailed out a ton for people that wanted to be a part of this for him. I have had six different people email their pictures already of the release that they did and WOW how touching. I cry every time I look at them. It means so much to me that people care enough to want to do this for us.
I will post the pictures we took soon…I have no space left on this blog so I am trying to figure that out!