Thursday, March 4, 2010

What can I say... Some Good and Some UGH!!

Where have we been you ask? Well mommy has been chilling for two weeks glued and I mean glued to the tv watching the Winter Olympics. Of course they were here in Canada, but also they took my mind off things and helped me relax and be somewhere else for a bit. Oh that was such good timing for me to have a distraction.

Time never stops for Wysdom though. Before I get into what has been happening on this end. I must just say that something happened to Wysdom around the time of my mom's funeral. He normally does not like crowds or a lot of new people. He was however so amazingly calm and relaxed with the crowd of new people.(So was Blyss) He sat quietly(well almost..just a few babbles) in the service. I had an escape exit all planned out..but he was good. Afterwards he was good and also at my parents house with constant people he seemed to like it. He never stops amazing us. So many people who know him commented on how well he was doing. Over the next couple of days a few family members heard him say Nana. He has never said that and never has since that day. Amazing.

Now let me get to the updates. Well about 2 days after the funeral things started to get busy again. We had a appointment that I had to keep, unless I wanted to wait 4 months for another date. So we got ready to go to the hospital the night before. We were kind of looking forward to the appointment because it was with a new feeding team that included a GI doc, a dietitian and an OT. Yes we have our own feeding team locally, but this team would look at his feeding or lack there of and give us suggestions and let us know if he needed a swallow study. Low and behold the night before the big appointment...we saw something familiar. Unwanted... But Familiar. Yes a start of another G tube infection. So we called the Pediatric Clinic and made the trek to the hospital for 9am the next morning. The surgeon was in surgery so we were able to go up to see the feeding team really quickly. Wysdom was a trooper he ate a few bites even though we know the tube area was bothering him. I guess the overall outcome from the feeding team was pretty good. We got rid of the 4am feed and we also were not stopped from feeding him oral. So his swallowing was okay. He did good. We still have to find a way to get him to drink, but he likes a small amount of solids so that is very good. On the g tube end though we had to watch him go through another painful cleaning of the area and a swab. This time we were put on a suspension of 2 new antibiotics which we were to do at full dose for the first week and a low dose for 3 weeks.

So in the meantime Wysdom got his first TOOTH!!! What an ordeal that was. I actually truly thought that he had RSV. He was so congested beyond belief. Cranky, coughing and vomiting all the time and I mean every feed. This was how he was when he got RSV at 2 months. We had to run the feeds at a slower pump rate of 90ml per hour and stop it quite often. If was horrible. We actually got our nurse to come in a check his lungs and also took him to an after hours clinic to see if he was okay. He did have a fever, but it was the congestion that freaked us out. Anyways... all is good and a little tooth has peeked out in the bottom at the front and let me tell you. It is SHARP!!!!!!!!!! Wysdom says.."Everyone beware...If I get a hold of you I will bite you and it will hurt"

He has also developed this fun habit at clapping when he hears music and also when he is told that he is a good boy or just when you tell him to clap. It is so adorable. I will have to get it on the camera when I can get a chance.

So now the teething crisis is over. For a couple of days we have had some tummy time and bumbo time. Wysdom has seriously not been on his tummy for months. He is very behind in his gross motor skill due to all of the g tube infections. However this week he surprised us and our therapist with his determination and strength. He is sitting up and rolling over a bit. He has managed to keep some of his strength. His arm strength is not great but his tummy muscles and trunk muscles are getting better.

After a few days of a regular routine.. we have hit another road block. Yup. Tonight we have noticed the FREAKING signs of a _______, _____, blank blank blank g tube infection!!!!!!!!! You get the picture. Ugh. I am going to demand a new tube or for them to send us to another hospital. This is crazy. This is the fourth one since October 31st. It is in the same spot and I am guessing the same internal infection that never goes away!!!

So in the morning we are of to the hospital. I will have to cancel his RSV shot for the second time that I had booked for Friday and more than likely cancel his sedated echo for the second time too. Needless to say that Stress is a word that I am all to familiar with.Today I brought out the lavender oil, the calming tea. It's pretty bad when your three year old knows mommy's favorite line. " I need a vacation":) I know things could be a lot worse, but I am just wanting my big guy to be able to crawl and play on the floor...Is that really to much to ask? I don't' think so!!!

Wysdom's smile is still strong and he even though he is in pain is still such a joyful spirit. Blyss is taking it all in stride and today even pulled out her own stethoscope and doctors binder like the nurse uses when she visits. What a pair I have here.


Stephanie said...

Goodness, when it rains it pours.
Hoping you get a new tube for Wysdom. Repeat infections should send a signal out to the doctors that anew tube is needed shouldn't it?
I love how he said Nana. Very sweet.

RK said...

My gosh, all the problems with the g-tube! I'd be losing my mind! I'm so sorry he's having to go through all this, and that you are too... I hope someone can get you some much needed answers to SOLVE the problem this time! We've never had these kinds of issues at all, so I'm not much help, but I do think I'd be going to a different place if this current team has not been able to get him healed up.

sheree said...

my goodness...that DARN tube! I am sorry to heat you are still having trouble with it. I hope this new team of doctors can put a stop to these infections once and for all.

So glad to hear too, that you have been able to just chill and be distracted. You needed it, I know.

Glad to have you back in the blogging world. You have been missed. :)

Tara said...

Ah, Sasha, you vegged out with the Olympics. I knew I liked you!

Sorry teething was such a bear...I hope the next ones are easier. Eon's teeth are incredibly sharp, too. He has not yet drawn blood on me, but he's been close.

I'm so sorry about the stikin' tube! Un-freakin'-believable!
Hang in there, friend!

mandd3 said...

Hi, I just found your blog through the baby center tube feeding group. I am so sorry to hear about your mom. I looke forward to reading up on sweet Wysdom and hope his tube infection clears up for good!

Anne and Whitney: Up, Down and All Around said...

so sorry for all of your stress... it HAS to get better soon... i really hope they can resolve wysdom's g-tube infection issues once and for all! glad to hear he is swallowing safely and that you can work on feeding by mouth :) i would love to see a video of him clapping if you can catch it on camera! hang in there!!!

Lisa said...

I'm so sorry the g-tube infection seems to be stalking Wysdom :( but I'm so excited for him and his first tooth!! :)