Saturday, April 26, 2008

A little update

The days are slowly going by and Sebastian is handling his new breathing issues with his typical strength and bravery. Tonight during a bit of awake time Stel took himout for a little ride on a very cool adapted bike. He looked so happy, unlike anything we have seen in the past long while, he was exhausted after this that he fell asleep pretty much as soon as he came in. To see that smile was so worth it. He is awake a bit more now and though he is still having breathing issues doing very well. We are hoping to bring him home maybe end of the week, which feels so great since last weekend we never would have believed we woulod ever bring him home again!

Oh my, with all thats been going on....I put a few squirts of ivory body wash in the tub for a few bubbles then once there was some water put the jets on for a bath. The bubbles overflowed the tub but they had so much fun and to see that smile on Ben was so heartwarming. He has had a difficult time. Today he had a hockey game and he did awsome so way to go!!!

Stel was planning to do the Canuck Place adventure challenge triathlon again this year but after all the outstanding help and support they have been giving us he is even more eager to help out. He is hoping to find a way to have Sebastian join him in some way if possible. He is again registered and in time his page will be better updated.

Tuesday, April 22, 2008

Sebastian is holding his ownHe is working hard and so far he has been starting to breath on his own. He does now lose conciousnes, his eyes dialate and shows his brain stem shutting down(we are told by the doctor), he had no pulse and then takes a laboured breath and comes back around so far. he has been awake a bit, but is quite tired a lot of the time.

Saturday, April 19, 2008

It's not going well

Sebastian is not doing well. His breathing has deteriorated over the last week or so until thursday and friday when it worsened rapidly. He now stops breathing and passes out. Typically if you stop breathing and pass out your co2 levels go up and your brain kicks in and you start breathing, unfortunatley Sebastian's brain does notalways rememeber to do this. Thursday and Friday he passed out a couple times each day, today it has happened many more times. In the past 1/2 hour it has happened twice, actually now 4 times in about 50 minutes. This is a huge increase...

Sebastian was admitted to children's hospital ICU Friday and transferred to Canuck Place this morning(saturday). The doctors hold no hope, and the ICU doctor transferred him here for end of life care. We do not know where this is going right now, but know that he is a fighter

Tuesday, April 08, 2008

We are Home

Well, we are home, and so happy to be home.

S's hip is doing very good, he is still on antibiotics for the post surgery infection but pain wise he is doing great.
His stomach not working problem's are not resolved at all. He has a gj tube placed as well as a ng tube. This is the 5th Gj, they keep migrating to the stomach so this one does not have the extra port for the stomach which is causing extra challenges - this the NG tube had to be placed. Now his poor nose has a ng in and the oxygen. We are not anywhere near resolving this problem but we'll see as time goes what needs to be done.

B started his spring hockey league and seemed to have a good game Stel said. Lacrosse has also started up, this will be a bit of a challenge as we do not know all the rules yet.

Baby I has been sick again so we have a bit a lack of sleep due to her being up coughing and or throwing up. She is still loving ballet school, and started going to day-care a bit while S was in hospital. Apparently she can hold her own!! especially when anyone goes near the dollies.

Any of you prayers out there please keep our good friend Michele in your prayers. Friday she had a brain aneurysm leading the doctors to find a very large brain tumor. within hours she was in surgery with the hopes they got it all. She survived to the relief of us all, unsure of the future right now. She is 21 with a 2 1/2 year old at home and a great guy who is staying by her side in hospital.

Thursday, April 03, 2008

I do not know where the time is going, these last years have just been flying by, feels like Christmas time was just yesterday, well maybe last week, but here we are into April already.... I am still having a hard time believing my baby, my firstborn will be turning 11 years old very soon!!!!

Sebastian is doing ok. He is staying awake more, more alert and seeming to be a bit happier
His hip infection seems to be under control and he seems fairly comfortable when we lift or move him. Today he had an MRI and is quite pale, his hemoglobin is low, but that is usual. We are still working on how to feed him, so he is still on TPN and hoping to start actually feeding him into his gut very soon. What is really seems he needs is a permanent j tube placed, they have now done 5 gj's but they keep migrating back into the stomach - which isn't working. There are some pretty bad complications which could possible occur from the j-tube, and the surgeon is not wanting to do this - I wonder if he is coming from a perspective of do no harm. We also were very concerned about this tube, but after his primary pediatrician (whom is a Saint I believe and has cared for Sebastian for his entire life) and other doctors whom know Sebastian well feeling this is what needs to be done we also agree.

All in all he is doing very well and now we just need to find a way to feed him - long term through an IV into his central line is not possible.

Tuesday, April 01, 2008

Well we are dealing with an infection in his hip, thats not a shock!!!
Each time that that hip has been opened there has been an infection.

We are running into some differing of opinions as to what to do about how to feed him and what kind of tube to insert and to where. He is still on the TPN so is getting all that he needs in that respect but has lost a little more weight which shouldn't really have happened.

Today has been a difficult and emotional day but hoping tomorrow looks better