Is about the only thing I have been feeling lately. You know, I look back to the days of the NICU and you think for some reason when you leave there that things are going to be okay. Things will never be like they were there. But that is so wrong. I find myself more worried, more stressed and more confused now when A gets sick than I did way back then. It totally sucks. I mean for real. He is going to be four in June and yet the nightmare continues. The worrying every time that he gets sick. It is always in the back of my mind that something horrible is going to happen. That my absolute worst fear will come true. That I won’t have this smiling, adorable little guy here. No mother should have to think of this when her child gets sick. But it is just yet another crappy thing about being the mom of a preemie, the mom of a child with special needs, the mom of a child with many health issues. We are not oblivious to ANYTHING and know that ANYTHING can happen.
So A has been sick since the 16th of February. Februay 18th I was told that he had pneumonia. Last Wednesday he seemed much better. Same goes for Thursday. Thursday night however his nurse woke me up and told me that she thought he needed oxygen because his sats would not stay up. (She does not have an order for oxygen therefore has to wake me up in these circumstances.) He did fine on 1/2L.
Friday morning he is fine. Doesn’t even need the oxygen. Friday was a good day. He had three workers here and did great with all of them.
Friday night went to bed fine. (I did have him on 1/4L because it seemed that at nights was when he was needing that little bit of help.) Wow, what a crazy night. He was AWFUL. At 5am I really started to get nervous. He was not going above 80 and if he did it was not for long. I had him up to 2L and it was not doing ANYTHING. I held him and that didn’t help. Finally about 6:30am he settled back down and was satting 90ish on 2L.
By 8am I was in his room getting him up yet again freaking out.
Talked to my parents around 9am and thought I needed to take him to the hospital. I figured I might as well change his oxygen tank as I knew that it was getting low and wanted a full one for the trip. Shut off the tank and then went downstairs to get a new one.
Come up and he is satting in the 90s with NO oxygen.
Talked to my mom and told her that I wasn’t going to take him. Pretty sad when you hum and haw over taking your sick child to the emergency because you know pretty much how useless it is going to be!!!
Had an okay day yesterday. Only needing 1/4 or 1/2L to sat well.
That was until he wanted to sleep. I held him (he only cuddles when he is sick!) and he fell asleep. That lasted about ten minutes max. As soon as he goes to sleep the difficulty breathing and crappy sats start.
Stayed up for the rest of the day. Was good.
Last night he was exhausted and I put him to bed at 10pm. Was asleep within 15 minutes, on 1/2L with sats in the 90s.
I headed to bed as I could barely keep my eyes open. Daddy stayed up so that I could get at least some solid sleep.
3:30am I am up to the lovely sounds of the monitor. From 3:30-5:30am I did everything I could think of. Turned up the oxygen, gave him a breathing treatment, did nose drops, checked his temperature, did some deep suctioning. You name it I tried it. Sats would NOT come above 90. He was snorty, tired and just having a crappy time. I picked him up hoping it would be a bit better. He was good until of course he would fall off to sleep.
I just held him and cried my eyes out. I am sure that my pregnancy hormones do not help with this, but I friggin HATE what my poor guy has to go through. It just isn’t fair. It sucks and that is the bottom line. And it sucks even more when I am worried but yet scared at the same time to take him in. I mean really what are they going to do different for him? The only thought I had was that they would most likely vent him and because I know he is fine awake I am not okay with that. It freaks me out. I hope to God that I never ever have to see him vented again.
So ya, I just cried and cried. Told him how sorry I was. How angry I was that no one ever helps him. Sorry that he suffers way too much for being a three year old. How I felt like a shit ass mom for not being able to make him better.
Life really sucks sometimes.
But I try to remember the bright side. I have my son here with me. I can love him, cuddle him, kiss him.
And then he smiles.
Well A has been holding his own all week and we never did end up getting admitted!!! This is great because I think he does much better here at home and I know that I definitely do too! It totally stresses me out being inpatient and it isn’t something that I wanted to deal with right now.
He is still requiring oxygen or his saturations stay in the high 70s or low 80s. He is also needing a lot of suctioning yesterday and today. Now any mom that does this knows that it just isn’t fun to do. I have a really hard time because I know how painful it is and it isn’t anything that I would want done to me. When A was a baby and first came home from the NICU I had a much easier time with it. Now that he is bigger it breaks my heart. As soon as he sees the long catheter he starts getting upset. But without the suctioning here at home there is probably no way that he would be able to be here at home.
So today is the day that A would have been 2 years old had he of waited until his due date. I still can’t believe how many people ask me if we use his “real” birthday or the birthday he should have had. I mean what sense would it be to celebrate his birthday on a day that means nothing now?
It’s funny too about this whole actual age and corrected age. In the past people would ask how old he was and I would say “well he is 5 months old or 1 month corrected…or he is one but 8 months corrected.” But now that just seems to be a thing of the past. The corrected age doesn’t mean anything to me anymore. I know that the doctors still use it but I don’t see the sense.
Today isn’t a great day though. A is still pretty sick, has the fever now and will be going to the doctors tomorrow. Physio was here this morning with OT but he didn’t do very well. A lot of blue spells and crankiness. Nutritionist was here as well. He has actually lost a full pound!
Now some reminiscing…
My journal entry from October 1st 2005:
Well sweetheart today was the day that you were supposed to come! You are 16 weeks old now or full term. And you are still so tiny.
I am exhausted and really need to sleep. I must have been last night too because I didn’t even write about your upper GI yesterday! It went good and you handled it well. This is good because I was up all night worrying about it because Danielle said she thought you would misbehave. But you didn’t! So the results show that you have severe reflux and I am not sure yet what they are going to do for you. There is some talk of a stomach tube to feed you but Marg told me that it won’t stop your reflux so we will have to wait and see.
Today went good for daddy and I. We got our new apartment and we both love it! It is really nice and I can’t wait to move all of our stuff in tomorrow. I am really excited though because we finally get to do your room!
Janice was on with you again today and you were doing well every time that I called to check on you. I miss you and can’t wait to see you to give you kisses! I love you sweetie. You will have a good night because Kris is on with you. Makes me more comfortable too knowing that you have great nursing while I am here in Guelph! Oh and you were 1989 grams tonight!
And from October 1st 2006:
Well this morning we drove daddy to work and then came back here and you had a nap. I had to wake you up at 10am to get you ready for your music class. You actually were really good there today for the first time. Both of the other times you were tired and fussy. You were full of smiles. Then grandma came and picked us up at 1:15pm and then we went and got grandpa from work. We were in Hamilton for 2:30pm for the meeting. It actually went really well. Dr. Meeny did admit that he believes that the domperidone had something to do with your problems but went on to say that he believes there is something else as well. He was very impressed with me and my knowledge of everything. He was also impressed about how supportive grandma and grandpa are. Dr. Sant’Anna is going to book you for a swallow study and a ph probe study to see how bad your reflux is. If it is better then we are going to change your gj tube to a g tube. And then we can work on more oral feeding and hopefully get you off the tube altogether. I am just really nervous about you having spells again. But maybe since you are older and your reflux is much better with the prevacid you won’t have a problem. She did also talk about the surgery as well. It is called a fundoplacation. She said normally the g tube is done with that to help the reflux even more. Dr. Mesterman is going to step back now since you aren’t on medication and just let Dr. Rosenbaum deal with that. She said that it is basically the same stuff that they deal with. So we’ll see how things go with him next week. She also was discussing your CP and her along with Dr. Meeny aren’t comfortable saying that it is CP. So that is frustrating. Hopefully Dr. Rosenbaum gives us some better answers when we go next Wednesday. We went upstairs afterwards and saw Rosemarie. She hasn’t seen you since you left. She couldn’t believe how big you were and how good you look. It is nice to see people that we haven’t seen in so long that were so great with you.
Oh it is so funny to look back at some days…..just shows me how much I have learned even in this past year. Not cerebral palsy? Domperidone? Fundoplication?
I love you little man.
Well we are still a pretty sick household here! A is on day 11 and mommy is on day 6. I never understand how we get sick because I am constantly washing my hands and using sanitizer. But it just goes to show that you can’t kill every germ that comes your way!
I had to post these next two pictures because they are just way too cute! Now anyone that knows us, knows that the dogs are NOT allowed on the furniture. They are very good about not getting up but lately Cujo has been doing some sneaking. I have come home a couple of times to find hair on A’s blanket. Well the other day I came in and he was sound asleep so I had to grab the camera…
Yesterday A had his two year check up with growth and development. The doctor that he sees is absolutely awesome and I always am happy to go and happy when I leave. He was very happy with A and the progress that he has had since he last saw him six months ago. Of course, six months ago he didn’t have his cochlear implant and that has brought him so much further.
The first thing that he always says is “so….brag about A.” I have gotten good but I admit the first time that I met him and he asked me I started crying.
I admire this doctor because he is honest and to the point. I was asking him his thoughts on ABR therapy and hyperbarics and he said “if it sounds too good to be true, than it probably is.” I am always looking for ways to improve A’s life and have done tons and tons of research into many different things that I would like to maybe try. However it is hard when some of these things are huge amounts of money and there is no guarantee that it will benefit him.
The power wheelchair was brought up again and it looks like he really will be going into one next year. I will be calling kidsability to get A into the seating clinic for this as well as trying to find him a suitable seating device for in the home. I am having a heck of a time with him now that he is older and wants to go, go, go. The only place here that he sits properly is his swing, however he is getting to the point where he is almost too big for it. With hip and spine issues with kids that have CP I have to worry about his posture constantly.
I told him that I really worry about the future and what A will be like. I always wonder if he is going to be the kid with CP but totally there and right on target with his friends or if he is going to be the kid with CP that is 15 but at a much lower age level. I know that he can’t tell me but I admit that is one of the things that I think about all of the time. That is the one thing that really sucks about cerebral palsy. The waiting game….
All in all it was a great appointment. I had a call the other day from his secretary to remind me about the appointment and to add more time because we would have to do the Bailey’s test. I was not impressed. I think that these tests to see where your child is developmentally are just crazy to do for a child that has cerebral palsy and is deaf. At the end of the appointment with him he said he would see us next year. I asked about the Bailey test and he said “nope, you are not doing it.” Right on!
We headed up to the NICU to see if one of A’s nurses was on, but of course no luck again. We haven’t seen her in a year! If you are reading this Marg, we try and see you all the time and miss you! We did get to see Joyce although A was upset with her for leaving him. hahaha
We really miss having Joyce around. She is absolutely amazing and one of the most caring, loving nurses that I know.
And now for my little man. As you can see the sickness doesn’t stop this kid from smiling!
A big happy birthday wish to Aunt K! We all love you, miss you and wish that you lived MUCH closer! Maybe one day A will be able to talk you into it! hahaha
So my little man is sick. The last two nights have been ROUGH to say the least. He has a pretty bad cold and today started with the fever. His cough is not sounding very nice either and he is just plain grumpy. I feel so helpless because there is nothing I can do to help make him better. It doesn’t help that he cannot have any meds to help with the stuffed nose, coughing and sneezing because he cannot have decongestants.
Yesterday we were at McMaster for his GI appointment. I had still never heard from the respirologist last week and yesterday I was hoping for a plan. Well actually that WAS the whole idea of seeing respirology and then GI. But as is no surprise the two had not even discussed A yet. Ugh.
So I had asked about possibly getting a g tube placed to try it out with A. Sure was the answer with the added “you are taking a risk….” Why is it that I always feel like I get stuck in a decision because no one wants to back me with it?! “Why do you want a g tube?” That was the next question. Well for starters, the gj tube was supposed to be temporary and it has been 20 months. Secondly the kid never feels hunger because he is fed 16 hours a day. He wouldn’t even know what hunger was if we were to stop feeding him. With a g tube I hope to get down to feeds every four hours or so and then work on oral feeds. It is kind of hard to get a kid to eat orally when he isn’t hungry. Maybe hunger is going to be the key to helping him do oral feeds. We all know that he was a good feeder before the tube so why not again?
Now I know that the gj tube was done because he was admitted into the PICU with life threatening events most likely due to reflux, BUT he has still has those spells with the gj. To me I feel that if we go to the g tube and he starts with the spells, then at least I can say that I tried and I will know that it isn’t possible. However without trying we will never know.
So now the plan is that the respirologist will call me in the next couple of weeks and we will see where to go from there. His GI told me to ask for the next available appointment to come back. LOL Well that wasn’t until March! I am not waiting until March to discuss things further.
On our way out we stopped at the NICU and got to see A’s primary nurse Danielle.
Last night was the first Leaf game so daddy and A cuddled and watched the game. Well some of it…
On a final note for today, I did hear from the doctor in London the other day about A’s MRI. A has mild PVL with a lot of white matter around the ventricles in his brain. English you ask? I’ll dedicate my next post to that!
Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.
Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…
There are the smiles!
Sophia giving kisses…
Alina woke up for some playtime however A wanted to sleep…
Haha way too cute…
Sophia opening her present…
Alina and her thumb!
Alina opening her present…
After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.
Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!
The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.
She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.
She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.
Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.
Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.
The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?
I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.
A waiting for the doctor at McMaster…go figure, now he’s happy!
Laughing away at something…
A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.
A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂