Wednesday, January 27, 2010

We're going natural

Well we are going "natural" as in seeking natural alternatives to help us out with Wysdom. We had three appointments spread between Monday and Tuesday. Monday we spent the morning with Wysdom's pediatrician. He got all of his usual stuff done and then his round of RSV shots. He also got his g tube peeked at. Tuesday was a bit more packed. We drove out of town to see his ENT and later that same day at the same hospital saw his Pediatric Surgeon. Both appointments turned out to be very short and really did not provide any of the answers that we were looking for.

For the ENT appointment we were getting his ear tubes checked and also asking about what could be done about his poor sleeping patterns at night. We were basically told that nothing really could be done now. Wysdom was already agitated after the ear check so the ENT could not do much at the time. We told him our concerns with Wysdom's breathing and trouble sleeping. He said that really the only option would be surgery to remove the tonsils and adenoids and that is not our best option now as it is quite a hard surgery for little ones his age to go through. The other option was steroid's and he really doesn't believe they are all that effective and absorbed properly. So.....we are left to deal with his breathing issues on our own for now and if it continues to call back. We are guessing that it maybe sleep apnea and a combination of reflux. So we are going to look at the reflux issue and also have a meeting with our OT to look at alternative beds.

Second on our visit for the day was with the g tube DR. He looked at the tube and said he thought it looked good. I asked "At what point do you remove a g tube if there is continual infections?" He said that have rarely ever happened and that is not really an option. So "What can we do to prevent this?" He said to make sure that we don't allow the g tube to be pulled our caught on anything. "I don't allow it and we are very careful" was my reply. He also mentioned that it just could be Wysdom's flora on his skin and that he also may have a weakened immune system.

So here is where the natural part comes in. Julian and I talked and thought that yes maybe his immune system is low and he can't fight of these infections or heal properly. So we started him off on Probiotics and also a vitamin supplement. We are also going to try to get him off some of his pediasure feeds and move into real foods. Not sure how we are going to get there yet. He eats solids pretty well just in small amounts. So we will have to figure out how to make him hungry and lessen his pediasure intake so he can eat solids. All of you that have feeding issues know what I am talking about I am sure and you know that it is not that easy. However we must try. Overall the g tube is looking okay. I asked about using natural oils for the tube and the doctor said I could go ahead and try it. I just have to figure out what it would be. We are more than likely going to go to a ND for Wysdom to help us support him the best we can with the right products.

Not much else to report since this week has been taken up by medical appointments. I did manage to drop and drag Wysdom's favorite toy through the grease in the parking garage. All Julian and I can do is laugh. Poor little ducky!!We are living in a world of "organized chaos" right now and operate like a well oiled team of shift workers. He does his shift with the children while I sleep and vice versa. All in all we are making it work or our system is working for us. We sometimes struggle but we have the best two little motivators here with us.

We are so thankful for both Blyss and Wysdom. Wysdom graced us today with his swinging in his bouncy chair while clapping his hands to the tunes of Black Eyed Peas. Blyss on the other hand entertained her self using our new massage chair that we got for Christmas. When I came back from the kitchen she sat naked and crossed legged in a yoga pose in the massage chair. Let me just say I almost spit out my food. I had to contain my surprise and laughter. She told me she couldn't feel the massage with her clothes on. There is never a dull, boring moment over here:)

Friday, January 22, 2010

The Good, The Bad and The Ugly

Thanks everyone for your comments. They keep me going!! Here are the updates from the last couple of days. There is some good news and not so good news. The good news is that my mom was discharged from the hospital this afternoon sometime. She is outta there!!! Yah and now at home and will have home care come and help her. She still has a tough road ahead but at least she is at home for now and no more procedures at this point.

The bad news is that I didn't get to see her today at all. Why you ask? Because we spent most of the day at the hospital( out of town one) with Wysdom. Last night we noticed that he was getting a puffy spot around his tube AGAIN!! It is in the exact same place which leads me to think that the first infection never truly went away at all. On Thursday we went back to the hospital and talked to another doctor. The g tube area looked fine from a quick glance. However if you touched it or moved around that area Wysdom freaked out. The doctor that we saw was great. He did order an ultrasound for Wysdom which was not fun at all. However he did believe me when I said I thought that there was an infection since Monday and finally gave us a prescription for an antibiotic.

Now for the Ugly. Well by early Friday morning we noticed it gathering into a boil or abscess again. We called our out of town hospital since they were the ones that put it in. We talked to another on call doctor and she was less than helpful. After taking to her, we quickly called her back in less than a couple of minutes and asked her if we should bring him to our local hospital instead. Can you believe that she had the nerve to tell Julian that we disturbed her from her sleep.!!! Julian handled that better than I would have. He said with all due respect how are we supposed to know if you are at the hospital or at home in bed. UGH!!! Anyways I was less than pleased. What's with the hospital's this week. So in the morning we went to Hamilton and they looked at it and immediately decided to cut it open again and drain it. They put some local freezing on it and after a 20 minute wait they went to drain it, however it had already torn open. My poor little man has to go through this again. They don't know why really. Either it's his skin flora or it's rubbing too much. They don't really know for sure. I am very frustrated and don't want him to go through this again. I told the nurse that I can't keep having this happen. He is missing all of his developmental activities like floor time and sitting. He can't do much because he is always healing. Julian and I are now under a bit of pressure we feel to find our own strategy for cleaning the tube and keeping infections away. They say that this is so RARE. Yah right. Not for us. We also feel we have to try to get Wysdom to feed orally as we don't want this tube anymore. This is definitely where I am asking for miracles in my life right now. This g tube is so time consuming right now and we still have eye, ENT, cardio and all other therapy appointments.

So if anyone uses anything really different to wash their g tubes or knows of anyone who does I would be interested. I am going to look into something natural to maybe put in the bath water or something. Who knows? I am not sure yet..but I can't have his tummy splitting open week after week and I can't go back to the NG. So that is where we are at. I know he is really strong and tough but enough is enough.

We got home around 3:00, I called my mom and then went right to bed. My house is a disaster and the food we are eating is not the greatest as we just can't keep up. Through it all though, Wysdom is STILL SMILING AND SPREADING LOVE. Poor Blyss, she has spent the whole week the hospital too. She is going to need a special treat for being such a good girl.

My new motto for the week is "Miracles are welcome"

Thursday, January 21, 2010

Can you say "Angry and Stressed Out"?

Okay forgive me for I am going to vent.I am drained. I tired and I am not going to lie, I am ANGRY. Angry for so many reasons that I don't think I can list them all. The best way to put it is that I am ANGRY with the medical field. I am angry at how they can treat a human being. I am angry that I had to spend most of my day arguing and fighting for my mom and my son.

Who would have thought that things could get worse than they are? Not me. I thought that things should be looking up a bit. Let me just tell you this week has sucked. It is like I am in a constant boxing match and I continoulsy keep getting knocked down. I stand up and get knocked down. I get up and get another punch and down I go. You get the point. Who would have thought that I would have to bring my son in to the hospital to have his g tube looked at (again!!) and then have to run upstairs to my mom on another floor and deal with her being laid up in the hallway all night after being booted out of her room. This is just crazy.

So let me just recap a bit here. Just after I posted how well things were going with Wysdom we started to notice he was having some pain again with the g tube. We have called the hospital so many times that I am sure we are driving them crazy. He has pain, he's crying and no one really knows what to do. We are being cautios and watching for any sign of infection. Tuesday we had our nurse look at it. The g tube looks good but he still is in pain, so we are thinking that there maybe an infection inside again or that the last one never quite left. So the early part of the day was spent on the phone with doctors trying to decide if there is something wrong or not. So we headed into the hospital after talking to the oncall pediatrician at our local hospital. They loosened it and took x rays to see if it is still in the right placed. So far all is good. The one thing that they could not say is if there is an infection inside. From the outside it looks good...but something is not right on the inside is my guess. It's my mommy intuition.

Then after Wysdom was done we all went upstairs to see my mom who is having a procedure done today. She was admitted on Tuesday afternoon. Let me just say that it has not been a good experience. My sister and I left her at the hospital on Tuesday evening after we got my mom all settled in after intake. My sister got her a phone set up and a TV to pass the time. We unpacked a few of her things and then said our goodbyes. When I called this morning I learned from a patient that "the woman who was here yesterday got moved". No biggy, so I call the floor to get her new extension and find out if she is back from her procedure. Well they inform me that she is no longer in a room and is laying in the hallway!!!. What the >>>>! So I ask to speak to someone who then directs me to someone else and eventually to a Public Relations person. To make a long crappy story short she spent the whole night in the hallway with no phone and no easy access to a washroom. She was left unattended for several hours and we didn't get to talk to her before her surgery. The message that the nurse said she would deliver to my mom to let her know that I called and would be there soon never arrived to her. Can you imagine. To be going in for a procedure that you are already anxious about and then to be put in the hallway with the lights on all night and then not able to see or talk to your family in the morning. Oh how I complained and will complain again. There is much more that goes with this story as far as no food, no help, unsafely and negligent behaviour on behalf of some doctors. However I am sure you get the picture. Anyways in the end some things got sorted out and she finally got a bed a mere 12 hours later. Most of my anger comes from the fact that the procedure that they attempted today should have been done a month ago. I have no medical training but I know that, mmm but who will take responsibility for that?! No one!! Hopefully she is resting through the night and everything is going well.

So I am at home now feeding Wysdom and trying to recover from the last couple of days. I am praying and hoping that the morning will bring better news than today did. I am praying that there is nothing wrong with Wysdom's tube and that I don't have to make an out of town trip to another hospital in the morning and I am praying that my mom is recovering and will get out of the hospital asap. At the end of all this I have to let today's and previous days anger go. So here is what I still am grateful for. I am grateful that my mom made it through today and that the doctor that worked on her was very good. I am also grateful that my husband has been able to to watch Blyss and Wysdom when I take off to the hospital or visit my mom at home. I am grateful that I have wonderful Aunts who come running when I call for help. I am grateful that my husbands family comes down to help every weekend. I am grateful for Wysdom and Blyss. I am grateful that even though we had problems at the hospital that there is one to go to. I am grateful for mornings and fresh starts.

Tuesday, January 19, 2010

We have one noisy baby!

Wysom has always been pretty vocal. However in the last week he has kicked it up a notch and is making lots of new sounds and babbling all the time. We are having so much fun with him and his noisy self. At times he can make such a loud noise that family members are totally in awe that the noise is coming from our little peanut. (Well actually not so little weighing in at almost 22 pounds). We of course are used to all of his noises, especially early in the morning. It does seem like Wysdom is trying to express himself more and mimic some of the things that we are saying.

I just have to say that we are having so much fun with him right now. He just seems to be thriving this last week. I think it could be also the fact that he is feeling better and has recovered(fingers crossed)from all of his g tube issues.

One thing that he loves doing is demanding for us to pick him up. He uses the sign with such force that you gotta know it's a demand "mommy pick me up now please"
Everyday I am truly in awe at how much joy and love he brings to our lives. It is just so amazing. We are so blessed to have two amazing children. One babbling boy and one Hannah Montana Rock Star.(more about that later)

Wednesday, January 13, 2010

Random Fun Photos

Here are a few random and I mean random pictures. When I went to upload from my camera I realized that I really haven't taken a lot of pictures in the last couple of weeks. So here is it folks. (As well just to let you know Wysdom's g tube is doing much better-will post more later about this).

Wysdom in his X mas outfit which he wore for about 10 minutes! Too Hot!!

This is us trying to get Wysdom to keep his eye patch on. We thought we would distract him with the hat. Ah nope that didn't work. We are to have it on for 1-2 hours a day. We can make it to about 15 minutes. HE HATES IT!!

I love this shot. Blyss took it. Isn't she an awesome photographer?

Wysdom giving daddy some love before the bath.

Laughs at bath time!

My big girl. Cutie pie.

Trying to do yoga.

My mom at Christmas. Christmas is her birthday. She would probably not like me posting this....but you all need to see who you are praying for.

Saturday, January 9, 2010

This weeks adventure.....

As per usual we are crazy busy. A couple of months ago I couldn't imagine being any busier...but we are. Well this week consisted of diarrhea and a couple of call to the hospital on call pediatric surgeon for our big guy. Long story short we are still dealing with the g tube and the rip as well as him having diarrhea for a couple of days from the antibiotic and blood appearing in his g tube. We went to the hospital once since the last post and our Pedi looked at the tube and swabbed it for any other little "germs". Good news is now that it came back negative. Bad news is that we now have some skin growth or granulation tissue. Yes it has all been hard and I hate to see Wysdom cry. He is one tough boy. Right now I still like the g tube better than the ng, but it hasn't been the easiest either.

Wysdom has been a real trooper. He takes it like a big boy. He so wants to get into everything and play and all we are trying to do is keep him still so the g tube area can heal. We did have a nurse come in today and she said to let him do what he wants to do and we will see what happens in the morning. Of course Wysdom had to go full force. I can definitely say that Wysdom has learned some new tricks this week. Since we knew he was in pain, we never let him cry really. We picked him up and cuddled him and try to reposition him. Now that he is feeling a bit better, guess what we are seening? Crying and whining and then when we pick him guessed it! A big smile and no more whines. He wants up all the time now. I just told Julian that we are in big trouble now!!! He is so catered too, especially because we don't want him to activate his strong reflux abilities and throw up everywhere.

This last couple of weeks he has become so much more vocal. Often people wonder who is making all that noise in the background when I am on the phone. Nope it's not Blyss, it's Wysdom. Blyss is handling this all in her own way. She has her own doll with it's own g tube and a doctors kit. She also is awesome at distracting her brother while he is getting things done to his tube that he may not like.

In general we are just staying on top of things. The house is a mess and meals, well let's just say they aren't the greatest these days. Any spare second that I get I try to head over to my moms. My sister and I have been trying to make her healthy food to eat to help get her strength up. We make juices( beet, carrot, celery to name a few). We are also looking into a lot and I mean a lot of alternative options for her care. So at night when I feed Wysdom I would normally blog, but now instead I focus on alternative cancer information. All I can say is that we take it one day at a time. We have my Aunts who are awesome and are helping out a lot with my mom's care. My mom is trying her hardest and so are we to do all that we can for her. When I do have a second to breath, I am totally overwhelmed some times. Thankfully, Julian has been awesome and so supportive. I usually leave him with Blyss and Wysdom for several hours a day. He definitely is letting me have more sleep and trying to keep me upbeat.

Thanks everyone again for your prayers and comments. I am always amazed and overjoyed at having such an awesome blogging community to be connected to and get support from. Even though I don't get on all of your blogs as much, I do think about all of you and miss blogging.

Well this week is going to be a crazy one. We have an:
appointment for the g tube, (out of town)
appointment for his forehead, (out of town)
appointment for his PT,
doctor appointment for mom,
feeding team appointment for Wysdom
and case management meeting for mom

Isn't it crazy how the brain works. I can remember all of the above appointments and dates and times all in my head, but can barely remember how old I am.(got it wrong today when someone asked at the bank). Mmmmm I think I just figured out why I can't remember my age:)

I will try to post some fun photo's soon.

Monday, January 4, 2010

Emergency trip to the hospital

Yup emergency trip to the hospital but we are home now.

We never ever have a dull moment. For the last week Wysdom has been dealing with some tenderness around his g tube and a little discharge. Nothing gross, but something that caused him some mild discomfort. Last night I played with him and had him practice his sitting by putting him on the floor between my legs with his back against my tummy. He played like this for at least 30 minutes or more and maybe had a few seconds of discomfort. I really wasn't pushing him to do it or anything and he seemed to be having fun. What a mistake that was. When I went to change his diaper after, I couldn't believe my eye. There was a big pouch of skin puffed up around the g tube. It was all red and it looked so swollen. Julian and I immediately discussed our options. Go to our local hospital emergency? Not a good idea. Call the hospital where the g tube was put in and where most of our doctors are seemed to be our best option. We contacted the on call pediatric surgeon and explained the situation. The surgeon advised us to wait and come in the morning for 9am to see someone in the Pediatric Clinic as the emergency staff may not know as much about the g tube as the clinic. So after much talk and lots of tears on my part, that is what we decided to do. We almost went to emergency because I didn't want to wait because it looked awful. However Julian talked me into waiting.

In the morning we rushed off to the hospital. Once we got there the game plan was quickly made. They were going to freeze his skin around the g tube and then cut it open to let the puss that had gathered, out. LET ME JUST SAY THAT MY STOMACH TURNED. THIS IS NOT FOR THE WEAK. My poor little man. As if he needs more procedures done to him. I was pretty upset at this because the g tube infections like this are pretty rare. We are so careful with it and wash our hands and sterilize before we go near the tube. Keep in mind this is already our second issue with the g tube since October.Julian being the trooper that he is was nominated by ME to stay with Wysdom, while I entertained Blyss in the hospital for an hour and a half. I just didn't think that I could handle being there today when they cut his skin open. I know I have gone through worse (heart surgery), but just couldn't do it. So when I got back in Wysdom was doing the cry that you do when you are really upset and are trying to catch your breath. He is SUCH A FIGHTER AND TROOPER!! HIS SPIRIT CAN NOT BE BROKEN.

The good news in all of this is that we didn't have to be admitted to the hospital. I had nightmares of this. Also he didn't have to have the tube removed which was another fear of mine. The way it looked with the swelling was very lopsided so we thought it was a structural issue. I am also so thankful for the doctors and my husband too. We are at home now and Wysdom is doing okay. He is fussy and getting his doses of Tempera(oh how I have come to love tempera). Right now he is sleeping peacefully. If all goes well we will go back in a week for a check up. We were supposed to go to the same hospital tomorrow for an ENT appointment but since it is an hour away I cancelled and will rebook it when he is feeling better.

Last night I had to pull out the books that I used to support me when I was in the hospital for Wysdom's heart surgery.It just all is too much, everything happening all at once. I already had a meltdown at my mom's earlier in the day. So I took a peek at these books on spirituality and hard times and read those before bed. Here is a quote that got me through the night. "Sorrow looks back, worry looks around, faith looks up" Anonymous . I think I will start to read some of these books again everyday like I used to do many years ago and hope that they give me some strength.

Saturday, January 2, 2010

My poor neglected blog

My poor blog. I have neglected it and also all of my fellow bloggers. I haven't been able to catch up with everyone as of yet. Hope everyone had a Happy New Year!!

Things are really hectic and busy on this end. My sister and I are spending our free time visiting my mom and trying to make her healthy things to eat. She is not eating much so we are trying lot of things like fresh juices, soups and salads. In the last couple of days she has felt a bit better and had a little more energy. She seems a little more hopeful these last couple of days. It has been a whirlwind, but we are hanging on.

On the Wysdom front we are dealing with a g tube infection of some sort. Over the last week I thought he was teething, which he still probably is. He kept crying and putting his fingers in his mouth. Finally Julain and I figured out that something else was wrong. We saw a little red discharge on his g tube site. We ended up going to the hospital for a RSV shot this week. We asked them to check it out and they said it was fine. However the next day we could see more discharge and he was in a lot of pain.(Didn't help that Blyss fell on the g tube with her knee..ouch). Anyways we called another hospital the one where he got the g tube and our doctor is off until Monday, so the on call pedi faxed our pharmacy a prescription. So he is now on some meds for 10 days. We are really not sure what is going on and are going to try to see our doctor this week. Otherwise he is doing well and still packing on the pounds. We are switching his formula right now giving him half of his Good Start and adding a second stage formula that is being mixed in. We are hoping that this will help with his reflux and that the enticing vanilla flavour will encourage him to bottle. We are currently trying to bottle him and he is taking about 10mls which is pretty amazing since he didn't bottle for a year.

This week we start back into our routine of appointments with a hearing appointment, feeding team and hopefully a g tube appointment. Will keep you posted on how everything is going. Thanks for all the continued support for my mom. I may not get to post as often as I would like. Most of my time right now is being devoted to helping my mom and researching alternatives that can help support her. I am going to try to at least post once every week to keep you all informed on what Wysdom is up to. He is doing a lot of fun stuff like interacting really well with his sister and making some crazy noises and faces.