Well I don't really have to much to tell you today, which is a good thing. All is well with Benjamin. Nothing has really changed. He is still losing weight, which concerns me a little. He's down to 6 lbs 7 oz. I guess the doctors are keeping an eye on that though. Tomorrow the surgeon is coming in, so hopefully we'll be there when she does.

Besides that, nothing is new...

Benjamin had another good day. He is still off the oxygen and hasn't had an issue at all. We are still working on his skin care trying to come up with the best way to get things healed. What a battle. I'm confident that this week things will sort themselves out and we'll get a little more clarity on what we should be doing and what to expect. I'm sure the surgeon won't give us any definite answers on when the next surgery will be, but we just want an idea if it will be sooner then later. His nurses this week are fabulous, we have a core team of 3 nurses who are wonderful. I am so thankful for them. They aren't afraid to speak their minds, try new things and advocate for us at all. So all is well...

A huge day!!!

Today has been a milestone day for my little man. He is now completely off his oxygen!!! Its so nice to see his beautiful face. All that's left is his NG tube for his feeds. Some kids become a little freaked out when the canulas come off and Benjamin had a little episode yesterday morning when we tried to take them off so we put them right back on. But the nurse today was a little more sneaky. She took off the end attached to the oxygen at the wall. So his prongs were in all day with no flow going through. Finally tonight when I got to the hospital the prongs were off. Benjamin has never been off his oxygen so this is huge. We are thrilled. It was definitely a worry especially with his murmur. So he's been off for 12 hours without an issue. Hopefully his night is well and he can stay off until his next surgery. We are still working on his skin. It seems to be a bit better. Its still red and sore looking..essentially its really bad diaper rash... So we're going to meet with the surgeon on and the stoma care team from LHSC. There are specialized nurses there..if worse comes to worse we can have transferred to vic. We love our nurses and doctors at St.Joes, but if they can get things under control at vic. we might opt to go there. So we'll see what this week has to bring.
Today was a great day...an answered prayer. God is so good.

Success

Today was a fairly good day. Jon spending the night at the hospital tending to Benjamin really helped. Today we decided to take some control over his care and change the order to the way we feel most comfortable with. The doctor was fine with this. I think he looked a little less red tonight and I think our method may work best. So that's what everyone is supposed to do. The nurse did some more bloodwork to make sure there was no infection brewing...causing the redness. But his bloodwork came back great...even better then yesterdays. His hemoglobin went from 88to 93 over night, so thats awesome.

When we were at the hospital tonight Benjamin was wide awake for a long time. We woke him up at 9pm and he was still awake when we left around 10:30. He was very alert and kicking his legs. He was looking around a lot. So I decided to try nursing again. Tonight he did great...I nursed for about 15 minutes. He had 2 little episodes during nursing, but he has to learn to suck, swollow and breath. He did well though, so I'm so excited.

So things are ok...today was a pretty a good day.

Today has been long, exhausting and frustrating. Benjamin had a lot of bloodwork done today. The good thing is that his platelets are up and his hemoglobin is up as well. So thats great...but his bilirubin is also up, quite a bit, which means there is still a lot of damage happening to his liver. The nutritionist thought that by now they would have seen a decrease, but that hasn't happened. I'm so scared about the damage the TPN is doing. Tonight they are starting something called cycling. They will increase the amount of TPN he's getting per hour for 18 hours and then shut it off for 6 hours per day. This will hopefully give his liver a chance to heal a little between. His bilirubin may not go down, but hopefully they won't go up. Benjamin is looking so yellow, which makes it so real...we can see that his liver is hurting. Today I sat by Benjamin's and left his stoma open. The air really helped again. The nurses changed him ever 2-3 hours, but it was still red this morning. So we've decided to spend all our time at the bedside making sure he's dry and clean. JOn will be there all night tonight. The nurses just don't have the time to sit there..and its pretty constant...the stool coming out. Its so acidic and watery that it just eats away the new healing tissue. If we have to have 24hr bedside vigils to heal him we will. Once the skin is healed they can put a bag on and increase feeds...increasing feeds will help his liver too. So 2-3 days of round the clock care by us will be worth it in the end. The surgeon was also in the unit today, unfortunately she didn't see us.. We were so hoping we'd get to see her and the nurse was supposed to make sure she would see us, but I guess she didn't. I'm so frustrated... Anyways, I'm hoping that 2 days of constant care will make all the difference. My poor son has been through so much and it breaks my heart. Pray for healing...and pray for strength for us.

Today has been a good day. We've made a little progress when it comes to healing. We left his incision and stoma open for 2.5hours this afternoon and the air really made a difference. I guess its like diaper rash...the best thing is to keep it open for the air to dry it out. So we're changing him every 2 hours and hopefully after 24 hours we'll see a remarkable improvement. His output was less today and he didn't lose anymore weight..so that's promising. So all is well. We're just praying for more healing and that he will tolerate his feeds better and start gaining weight.

38 weeks

I can't believe Benjamin is 38 weeks. Time flies. Benjamin had a great day. His oxygen had gone way down and he doing so well. We're still fighting the battle with his skin. Its hasn't gotten any better and we're a little frustrated. I finally asked the nurses to change him every 3hours so I'm sure that will help and in the afternoons we're going to leave it uncovered so the air can dry it out. I really hope that helps. Benjamin's weight dropped again in the last 24 hours, so I'm a little worried about that. I'm not sure what they will decide to do tomorrow. They may wait it out and see if he starts to go up in a few days, or they could drop feeds back to 6mls...or they could fortify my milk...we'll have to wait and see.
Anyways, over all things are good. Benjamin is happy and even if we're not really progressing we're not taking steps back either.