November 7th: Day 53

Benjamin had a more touchy day again yesterday, but he settled in pretty well overnight. He also had a good day today, they were able to regain some of the ground on the vent that was lost a few days back. He has been a bit more touchy again tonight while we have been here with him. He has been weighed and measured and the 'little' stinker is 11 pounds 11 ounces and 24.8 inches long!! So he is definitely growing. Today, they also turned his NG tube (the one going into his stomach) from suction to gravity...they are trying to see if he can tolerate this so we can then start feedings of breast milk. Right now, he is sleeping comfortably and we hope to keep him like this or better so they can continue to make progress.
On another note, we are VERY pleased to say that Ellis is supposed to be busting out of here soon...Monday is the plan. We will miss them terribly, but we are SOOOOO happy that he has recovered from everything this well. He is doing much better than expected.
We will try to post more asap.

November 5th: Day 51

Yesterday, they went down on Benjamin's vent settings, both the oxygen and the rate...they are also weaning his pain/sedation meds (narcotics) and his seizure medication is going to be 'auto-weaned'...basically, this means they will keep his dose the same as he grows, so eventually he will just outgrow the med and hopefully not need it anymore. So with these things, he is going thru withdrawal from the narcotics, and they expect he is going to be much more touchy again. He's basically detoxing. Last night Tammy was able to get his head mid-line and he actually tolerated it quite well. We got to have a period of awake time with him that was about an hour and a half which was great. We just talked to him, sang to him and read him some books. He really seemed to enjoy all of this. Benjamin's blood gases are not quite what the Dr's would like right now, as he is holding on to excess carbon dioxide. So today, they are going to replace his NG tube and also flip him onto his belly for the first time since before his surgeries. Hopefully this will help him get rid of some of the carbon dioxide. His chest tube is lessening in the amount of fluid it is putting out...if it doesn't drain anything for roughly 48 hours, they will consider removing it. Also, yesterday, his mucous secretions increased again...so they are doing cultures from his trach tube and his broviac in his leg to rule out infection. I'm assuming this will mean he will be in isolation for the third time until the cultures would rule out anything contagious. So overall, he had a more bumpy night after we left...hopefully, he will have a better day today. I'm just glad we got to enjoy some time with him yesterday while he was quite comfy. I will update more when I can.
Kel

November 3rd: 49th day

Yesterday, when Dave and I went to visit Ben, we both thought that he looked so much different..older. While we were with him, even though his oxygen sats were good, he was shunting, and more than he usually does..(his oxygenation was not as good to the lower extremities). It was still acceptable, but not really his norm. Today, when I got to the hospital, his heart rate was elevated and his sats were separated again. Mindy said on rounds the doctors had decided to give him an extra dose of his lasix to help pull off some of the extra fluid after the results of his daily chest x-ray....I realized today this extra fluid was probably why he looked a bit older, his face had been fuller, not swollen, but just fuller. He had therapy today and with this they attempted to put his head a bit more to the mid-line, but he really doesn't like this. Afterwards he just had a furrowed brow, not super uncomfortable, or looking like he was in a great deal of pain, but I knew something was making him feel bad. Well, Mindy moved his head back to the side and had also given him his lasix dose...I left for a few minutes and when I came back, everything was looking much better. Ben just looked more comfortable, and his sats both came up into the 90-100 range...which is much better. Even though his sats were better after he urinated quite a bit, he was still much more 'touchy' today than he had been in the past few days. Even with this they are still making progress on weaning his vent support and pain meds. He also had another cardiac echo today, of which we are still awaiting the results. This is basically how his day went today, we are hoping for a quiet night for him. This picture was from today after we got him more comfy....

Pictures of Mommy holding me for 1st time and of incision

November 2nd **MOMMY GOT TO HOLD ME!!**

Today was absolutely amazing. Ben had quite a big day...never did I think it would be such a big day for me as well...Benjamin is on his 48th day of life and I got to hold my little angel for the very first time today. I cannot even explain how that felt....there are not words for it. He is such a beautiful little boy and he was so good when I held him that they let me keep him in my arms for a bit over an hour. He just slept in my arms, and as any parent knows, it is a wonderful gift to watch your baby peacefully sleeping, especially when it's in your arms after waiting nearly 7 weeks. It was very hard to give him back, as I'm not sure when I will get to hold him next. (I feel that Daddy should get the next chance....I offered the option to him today, but he graciously let me be the one to hold Benjamin). Part of the reason I got to hold him was because he got a big boy bed today. He was pretty much too big for the original bed from the beginning, but needed that type of bed for a while. Now he has more than enough room for him and all of his zoo...the stuffed animal collection just keeps growing.
Ben also had his art line removed today, so that is just one less line coming out of him. He will now be getting stuck in his heel twice a day to get his blood gases done. They also said his fluid from the chest tube is starting to lessen, so hopefully soon we will get to the point that the chest tube will be able to come out as well. In the meantime, they are weaning his pain and sedation meds by very small increments, only weaning one every other day. They are also making slow steady weans on his ventilator as well. Ben has been trying to breathe with the vent quite a bit more lately. We are also hoping to get to the point soon where he can start taking some breast milk thru a NG tube. We will of course need to see how he tolerates this and it will be VERY small amounts given at first...probably only one ml..(1/5 of a teaspoon) at a time...(this will be happening while he is also getting nutrition via his TPN). So, in other words, he will still be having a lot of changes going on and hopefully he will continue to tolerate everything even better than expected.
Again, we are still not at the point where we are guaranteed that we will be able to bring him home, and believe me...when we get to that point, I will be shouting it from the mountain tops....but I am so grateful that God has brought Benjamin this far and continue to pray for good things for our son. We spoke to one of the NICU nurses today who has a 6 year old son who is a CDH survivor...we discussed what types of things to expect both in and out of the hospital...The road to recovery is likely long, but I truly feel like we are on the right path....and will appreciate each day for it's progress and continue to be thankful for everything as it comes.
Check out the pics of his incision and even better, me holding Ben.
Love to all.

BENJAMIN'S BENEFIT/FUNDRAISER

Details for Benefit/Fundraiser for Benjamin....
Date: Saturday, November 14, 2009
Time: Doors open 6pm, Trivia starts at 7pm
Silent Auction tables close at 10pm
Place: Catholic War Vets (off Route 159 between Belleville and Smithton)
Cost: Trivia will be $80.oo per table.
Individuals will be $10.00.
There will be 8 people/table
Please bring your own snacks.
Drinks available at the bar.
Any donations for the silent auction or pre-registration please contact Karen and Vic Morris @ vvbarron69@hotmail.com OR dhubble3@charter.net
Donations are still needed and are tax deductible.

November 1st

It's been a few days and I haven't had time to update until now....Benjamin's last surgery went great on Thursday. He is completely closed up now. He did wind up having another pleural effusion issue that morning, so they bumped his surgery up to an earlier time in the day due to this. They also inserted a chest tube to be able to drain off the excess fluid that has been accumulating in the chest. After the surgery for the first day or so he was definitely more touchy again and required more medication to help out with the pain. I just got off the phone with his nurse, Beth, and she said he made some good baby steps in the right direction last night. He required less pain meds and his fluid from his chest started to decrease in amount. He had his catheter removed this week, so now he just gets his diaper changed like you would normally do. He's still producing a good amount of urine and making his own stool which is great because it means his intestines are functioning pretty well. They may have to take the art line out of his heel and resort to heel sticks for his blood gas work now, as the line isn't reading well and is not allowing them to access the blood required for the blood work anymore, (this is pretty typical, they don't last too long). I can't imagine getting poked with a needle in the heel would be very comfortable, but at least it's one more line out of him and hopefully they can make sure he gets it done after a dose of his normal pain meds.
Yesterday, I talked with one of his nurses, Mindy....I asked if she thought maybe in the next month, as long as he is improving, if we would be able to hold him for the first time. She thought that would be ok coming up soon, but obviously Dr. Saito would be the one to clear this. Obviously, Dave and I do not want to do anything that would make it harder for Ben, but it has been so hard not getting to hold him for this long! That will be a wonderful day!
Well, we are off to church for the day, and to spend some time with our kids. Hopefully, we can update some pictures today. God Bless.