Mama Sharon held me/Ben yawning from all his hard work

Today, Benjamin is 10 weeks and 1 day old. He had a pretty good day today. He is still off of the ventilator and is doing really well as far as his respiratory status goes!! He has been having some rough times withdrawing from his pain and sedation meds the past few days though. There have been times that he is not able to be consoled at all and needs another bolus of his meds that we are trying to wean him off of....and then other times he calms down pretty easily. It's been a different situation once again....he is not used to being held, so unfortunately, that isn't what necessarily calms him down. In fact, given his mood, it could make him worse until he gets used to the touch of being held. Today, he had a good day for me, and as you can see, it was great for Mama too!! It was the first time she got to hold Benjamin.

Ben acted up just in time for Dave to show up tonight after work. He finally calmed down though after getting his boluses after crying for about an hour....I just called to check in on him...Laura, Ben's nurse tonight, said he is doing fine now. She just finished up giving him a bath and he is comfy. Hopefully, we can get him through this withdrawal sooner than later and get him further on the road to recovery. We definitely have much to be thankful for this year...We hope everyone has a wonderful Thanksgiving and it is spent with those you love. We will try to update again asap.

Thanks to the Thanksgiving sneaks who left us a present on the front porch last night :)

Breaths for Benjamin

Today was a monumental day for Benjamin.....are you sitting down everyone? He made so much progress weaning on the ventilator support that they removed his breathing tube! We knew this was likely coming today, and we were anxiously awaiting this to happen. This is what we were praying for...that he would do well enough to have the ventilator support taken away and for him to be able to breathe on his own. Sometimes, once the vent tube is removed, the kiddos can wear out from having to do all the breathing on their own, and need to have a new tube put back in....but as of right now, he has been off the vent now for roughly 10 hours and he is still doing wonderful. We are now praying for him to continue doing well so he can eventually wean off of the high humidity oxygen flow as well. Check out his pictures....I think the looks say it all, he looks so relaxed on the first pic and so excited on the second pic to have the tube out.....more to come soon!!

November 20th (CHECK OUT BELOW FOR BLOG)

More good news

As I begin to blog tonight, it's been a few posts since I've written one....I am nearing the point of exhaustion, as any parent knows comes when the end of a day is nearing. Our home was filled with joyful screams and laughter tonight as the girls were acting goofy playing dress-up while I was attempting to clean. We have the Lady Antebellum CD on in the background, I am writing this and David is working. This CD was on earlier in the night and the girls and I were dancing and just playing around. Elsa is now drifting off to sleep and Emma is playing Barbies in the playroom with her cousin Delilah who is staying the night. It has been a wonderful night, following another wonderful day. The past few days have again been huge for Benjamin. Yesterday, they really started to wean off Benjamin's nitric oxide (this goes in with his oxygen, it's to help treat the pulmonary hypertension = high blood pressure in the lungs...this is the most difficult part to treat in CDH babes). When I walked into his room today, I realized how quiet and peaceful it was in there. I don't think I even realized how loud the machine that delivered the nitric was. As Ben was sleeping today, I stepped outside of his room into the larger room where they have enough room for at least 12 more babies. When I stepped into that room, the alarms were going crazy as they have a lot of babies out in that more open room. I was watching their monitors, and it took me back to when he was so much more unstable and he was setting off his alarms all the time. Then I looked over my shoulder back into his room, and it was still peaceful...no alarms, no more loud machines, just the quiet you'd expect while your baby is sleeping. I was so thankful, it took a minute to soak it all in. As horrible as I feel for the parents of those babies who are in distress currently, it felt good that THIS time, it WASN'T Benjamin.
He has now been off of the nitric for about 12 hours and his ventilator settings are getting lower and lower. Yesterday, when I left, his rate (BREATHS per minute) was at 20...tonight as I write this, the machine is only assisting with giving him with 14 breaths per minute, the rest of it, he is doing on his own. He still is getting pressure assistance from the machine to help keep the lungs open, but once the rate is down to 10, the plan is to start weaning the pressure as well. After that, we are hoping that in the next few weeks, he will be able to successfully come off the life support/ventilator...for good.
Today was his off day for his narcotic weans....but they did start weaning on another medication, milrenone... this helps make his heart contract more effectively. Now, it appears he will not be needing this much longer either. In a few days, we are hoping this medication will be gone forever also, and when this happens, he will be able to have the PIC line removed from his left leg. (It's been in since he was 2 days old).
Yesterday, Benjamin also started a new therapy with Renee. He got moved into his boppy. This gave him a completely different view on his room. It is quite a production moving him with the breathing tube still in him. They have to keep the tube in place and even a 1cm movement could be bad news..but it is doable, we just need a few extra hands to get it all done. He also started getting pedialyte introduced into his feeding tube yesterday, at the rate of 1ml per hour. That's only 1/5th of a teaspoonful over the course of an hour! Since he tolerated it so well, they actually replaced the pedialyte with breast milk...Yeah, he is finally getting the good stuff!! Although, from how quickly he is growing, you'd never know the difference. He is definitely going to be a big boy. At last check he was almost 12 pounds and almost 25 inches tall.
One concern that has surfaced in the past few days is a condition called nystagmus. It basically means that his eyes, particularly the right one, is wobbly when he looks around. They are unsure if this is a result of the narcotic wean or if it is a result of the brain bleeds that he had. Either way, this is in my opinion, a small issue. He has been through much more difficult times than this and beaten all those obstacles so far, so I believe he will be able to overcome this as well. Of course, this will also require intervention from GOD as he calling all the shots...Benjamin just relays what the results are to us.
Benjamin is definitely making moves in the right direction...Emma has already said several times how all she really wants for Christmas is to have her baby brother home. She made me cry yesterday when I was trying to probe her for what she was going to request from Santa this year. Her response was that she really didn't need much of anything, as she already has plenty of toys. She did say it would be nice if she got surprised with a few new things and then suddenly, she burst out..'Mom, I just had a great idea pop in my head, wouldn't it be great if Santa could bring Benjamin home for Christmas?!?!' That would be a wonderful Christmas miracle.....and the only present any of us would ever need for Christmas again. As I close this, I am hopeful for Emma's (and our) Christmas wish to come true, so our family can be where they should be at Christmas, at home...all together. This year, if that happens, there won't be words strong enough to express the emotions, but if he needs more time to recover, I'm OK with that too. I just think this Christmas would be so wonderful having all of our babies here with us and I believe either way, Christmas will be a celebration of the TRUE meaning this year.....more than any other we've had. God Bless and Love you all.....Kelly

Ben's Dressed and Movin!!

Three Big Days for Ben......
On Sunday the 15th, Ben's two month Birthday, he and I shared a much anticipated Birthday present with each other. I was able to hold my son for the very first time in 2 months. It was amazing!!! When Kelly and I arrived at the hospital on Sunday afternoon we were standing at the bedside looking at Ben as usual and Mindy (Ben's Nurse) asked who is going to hold him. I thought she was joking. She said she didn't know how we could just keep coming to see him and only be able to stare at him. Finally, It was our time, Thanks Mindy. I held him for about 45 minutes and he was wide awake when he was first placed in my arms and we just looked at each other for what seemed like forever. Eventually I rocked him to sleep and it was wonderful. It's hard to describe something as normal as holding your 2 month old son as being incredible, but everything has been different with Ben. It's nice to have those normal moments with him.
Monday was another milestone for Ben. He got dressed!! Since Ben had his chest tube removed last week and his wounds were heeled the nurses said we could bring in some clothes. Kelly had picked out a onesie from where else........Target. Monday when we went to visit Ben we were able to dress him for the very first time. He looks so grown up with that outfit on, and we took plenty of pictures. It was a fun day for all of us.
When we arrived at the hospital today it was Kelly's turn. She held him for over an hour and then I held him for about an hour. It was our second time, mine in three days. Hopefully this becomes more normal and I won't get so excited that I have to write about each time I hold my child. Ben did great and Sats were mostly 100/100. As of 10:00 p.m., Nov. 17th Ben is doing great, his life support vent for beats per minute is down to 26!! His oxygen setting is down to 54%!! Keep in mind he was at 70 and 100% a little over 2 weeks ago. Way to go Ben, keep it up.

More thanks:

Thanks to Holly Debbie & DeeDee for all the work you did for the benefit, you guys are awesome.

Thanks to Danielle and Drew for babysitting Emma and Elsa during the benefit, the house was not even on fire when we got home. They were so cute and drooling all over our couches I almost let them sleep. You guys are so sweet, thanks.

Thanks to Tanya and Josh for donating way more than enough, and to Matt & Misty for driving all the way from Ozark, MO to be there.

Thanks to my Bro Timmy and his wife Laurie for all of their support and for helping us find Christ Church, we wouldn't have the strength to get through this with out that support.

Thanks to the all the people from Express Scripts for their donations and for the gift card book. We have been living off of that since Sunday, you guys are an excellent support team for our family and now I know why Kelly drives all the way to Maryland Heights to work.

Thanks to everyone else for your prayers, keep going, for they are being answered in the form of a little Miracle named Benjamin David.

Benjamin's Benefit was AWESOME....Thank You!!

Check out this pic of Ben, Tracy (Ben's Guardian Angel Nurse) took this while we were at his benefit. Benjamin was happy and excited to have approximately 400 friends and family show up on his behalf. Also our sincere apologies to the over 60 people that showed up and had to be turned away at the completely packed Catholic War Vet in Smithton. Kelly and I were completely overwhelmed to see the line to get into the hall all the way into the middle of the parking lot. (Thanks for the use of the hall Tiffany). That means a lot to see so many people still care about other people in this world. GOD is GOOD All the TIME!! We dream of the day when Ben is growing up and we can sit him down and tell him the story of how his incredible journey has touched the lives of so many people in the most positive ways. Special Thanks to Karen, Vic, Dale, Donna, Nate, Johna, Abby, Lexi, Wally, Tiffany, Jim or Tim, Sharon, Ian, Chrissy, Rev. Allen who led the prayer and the many others that donated time or gifts on behalf of Ben.
Benjamin has responded to all the Love that was shown last night. Today he is doing amazing. His vent rate is down to 36, Oxygen 80%, he is still scoring 100/100, keep going Ben. Hopefully Mindy (Ben's Nurse today) can stay awake long enough to watch Ben today. She was at the benefit and I'm pretty sure she wasn't holding that Smirnoff for Renee who bought half the silent auction. Just Kidding, we Love Mindy and all the Children's staff. Renee made the most awesome pins for the benefit that will most likely end up being on the shirts we will have made for Ben. As if the Children's staff doesn't spend enough time helping all the children while at work, they devote personal time outside of work to help the families even more. That is what makes Children's a special place, the people. THANK YOU!
A boy scout and his Father just came to the door, I couldn't help but buy some expensive popcorn after all the support everyone has shown for us. I also hate to tell Ben when he grows up he and I will be going to all the supporters and neighbors houses and he will have a lot of leaves to rake, snow to shovel, grass to cut, etc..... He will be happy to do it.
Speaking of neighbors, Diane, Leslie, Dee Ann........ AMAZING!!! You guys never ask for anything but are always the first to offer help.
I wanted to Thank my Dad for helping keep my business going when I need him and giving advice and support through our roughest times. My mom for coming and watching the girls so we can see Ben. Kel and I want to thank Jim And Sharon for leading by example, they are ALWAYS there for us when we need them, for anything at anytime. If we are half the parents they are to us, when our kids grow up, we will be parents of the year.
James and Christine, the parents of Ellis, Ben's ex-NICU neighbor... Thank You. James stayed at the benefit and helped clean up after everyone left, and he just continues to amaze me. My life is better for just knowing them.
Kristy, thanks for being there for Kelly and I. Your babies are amazing and you are a wonderful Mom. I can't wait for a play date with the L's and Ben. Love you.
I could thank people all day, I will save it for another post..... Don't worry if I didn't thank you, I will, and I appreciate everything from everyone.
O.K. just one more I promise. My sister Laure. I just wanted to Thank You for always cheering me up when I'm down. Always seeing the bright side. Just for always knowing the right things to say and do. I overheard James and her talking last night. Everyone who reads this go hug your kids right now. Some people never get the chance. James and I are lucky. He has Ellis home and gets to hold him anytime he wants to. I don't get to hold Ben, but I will never complain. I have gotten to see Ben for the last 61 days... Read him his bed time stories, say his good night prayers, and just Love him. Laure, when I see Ben I always think of your son Gabriel, he is not forgotten, He is in our hearts. He is looking over his baby cousin, Ben. Love ya Sis.

More good progress

Right now it is Saturday and we are visiting with our little man while he snoozes. We are excited about tonight, but even more excited that Benjamin is making more progress. His blood gas was really good again this morning and they were able to wean his ventilator settings again...this time more aggressively than they've tried before....his rate is down by 4 today...to 40 and his oxygen percent is also down by 4...to 84%. Even with these weans, he's got oxygen sats of 100/100 with no fluctuations! We still have a long way to go, but we are headed in the right direction.
We can't wait to see everyone tonight and celebrate how far he's come so far...one of the most important people so far in his life will not be able to come as she will be busy watching over him at the hospital...Tracy is really his Guardian Angel.

Keep the good days coming!!

Today when I arrived, Benjamin was crying a bit and his sats were drooping just slightly. It appeared that he didn't like his position, so his nurse Mindy helped to get him back to a more comfortable position for him and he settled right in. He was awake and comfortable for almost 2 hours while I was there this am!! He was moving around quite a bit, and this time it wasn't movement from distress, just perfectly normal baby movements. The only other time he had any issues while I was there was when some mucous settled in his chest...Becky came in to suction him and then he threw up again...but again very quickly settled in and was very chilled out. During his awake time, I read him one of his favorite books..'Yummy Yucky' (thanks Katie) and then I watched him play with his elephant and his giraffe for a while. The giraffe was right above his head and he kept moving his little arm like he was trying to hug him...each time the giraffe came down it looked like he was giving it a kiss on the lips! After all that playful excitement, he had a few adorable little yawns and finally drifted off to sleep.

His blood gases were so good today that they were able to wean his rate twice today, come down 2% more on his oxygen, decrease his pain med, and he didn't even need his boluses that he usually gets with his care at 4pm because he was so comfy and chilled out. Mindy said she did all of his care and he was awake and then just fell back asleep comfortably after she was done. (Awesome!! Thank you God!)

Also I was told that I can now bring in button up onesies for him to wear now that his chest tube is out and he is more stable. This will be the first time he's ever been able to wear any clothes of any sort, so I am very excited about this. I can finally get him a few items to wear. I'll definitely have to pay attention to the weight and take his height into consideration...the 'little' stinker is greater than 97th percentile for his height...big shocker, right?

Right now, Daddy is over at the hospital with Ben and he is getting another bath. I hope to hear more good news tonight when he gets home.

I am anxiously awaiting this weekend and can't wait to see everyone!! Hope to post more good news tomorrow.

Another great day

Today makes day #57 for Benjamin in the NICU. When we arrived today, Benjamin was totally relaxed...he had just finished getting a massage from his personal masseuse/girlfriend...Renee. He's very fond of her and really enjoys her visits. She made him the sign I've included in this post, way too cute! Overall, today Benjamin had a pretty big day. They removed his chest tube..one less thing sticking out of him. We just hope he tolerates this well and gets to keep it out. Also, they were able to make another ventilator wean today.
Not long after we got there, his nurse, Amanda and Renee tried to move his head mid-line, and as soon as they did this, Ben threw up. Next thing we knew, we had 2 doctors and several other staff in his room. We very quickly found out that they were actually pleased with him doing this...basically, he was strong enough to get the fluid that would normally require some suctioning out on his own this time. They are expecting him to have pretty bad reflux, so they started him on protonix to help with this. They also said they are going to hold off on starting to feed him breast milk for a bit longer. Tomorrow the plan is to make another wean on his pain medication and hopefully another wean on the ventilator.
After visiting with Ben tonight, we picked up the girls...Emma talked about wishing on a star tonight for Ben to be well enough to come home for Christmas. Like any little kid, she had more than one wish, the next was for Ben to be well enough to take the trip to Florida that she talks about all the time. Then she drifted off to sleep on the ride home, likely dreaming about the ocean. Elsa on the other hand, had to be woke up when we got to mama and papa's, so she was awake on the whole ride home. When we got home, I took her in her room, rocked her and sang 'Jesus Loves Me'...every time I stopped singing, she would start. It was so adorable.
I would like to add that Ellis is loving being at home with his family and we could not be happier for them!! I spoke to his mommy last night and he had a great first night and day at home, where he should be. Speaking of yesterday, it was quite a big day for our kiddos as well...we celebrated 8 weeks of life with Ben, Elsa turned 17 months, and Emma got her first loose tooth!! Emma's tooth came loose at lunch, biting into a hot dog. She has been very busy wiggling it around so the tooth fairy can make a visit ASAP.
For those of you attending Ben's benefit this weekend, thank you in advance. We cannot wait to see everyone and truly appreciate everyone who is making it to the event. We are planning to have a great time and we hope to have more positive news to share that night..FYI...the official color for CDH awareness is turquoise if anyone is struggling with what color to wear :)

Happy 8 week Birthday Comfy Ben

DAY 56

When I arrived at the hospital to see Ben today Kelly was taking pictures of Ben as usual. Tracy, (Ben's Nurse), had him laying in the most comfortable position. He was on his side and had his lion that his sister Emma had given him (because he is so brave), laying under his left cheek supporting his head. A small cloth tucked between his little legs and covered by a yellow blanky. I just wanted to scoop him up and hold him in my arms. (As I am typing this, Kelly is watching tv and a Sandals Resort ad came on for 65% off. I'm listening to my Ipod and typing and I could hear her say UUUGGGGHH. I said "what". She said "were not going there any time soon"). I'm gonna say that's pretty accurate. I think Ben and his sisters would rather go to Florida anyway, we will wait for Ben. He has made us so much closer as a family and I have never looked at Kelly , Emma and Elsa the way that I look at them since Ben has come into our lives. Matter of fact I see everything differently. Thanks Ben.
By the way Ben is doing wonderful and is taking his baby steps with his vent and pain med weans. They removed his NG tube and inserted a feeding tube. We are just waiting for him to let us know when it's ok to start 'feeds'. He is enjoying his twice a day flips from back to belly, maybe he will take after the Megahy's and be a gymnast. The last couple of times we have visited he has looked super comfy. Ben, Kelly and I want to thank all of his NICU nurses for taking extra care to make him as comfy as possible. God Bless everyone that has been there for Benjamin's Journey. Love, Benjamin, Emma, Elsa, Kelly and David.

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.