So one update I forgot to mention in my morning report was that there is one concern that we've been monitoring. The top right lobe of Birk's lungs has begun to collapse. This is common as he has not moved or taken a large deep breath on his own for a week now. They expected this. We've made some adjustments to help relieve this, but it might just take being off the vent and having a really good cry to pop that part out.
1. They increased his Peep settings on his vent to put more pressure in there to pop it out.
2. They are having him lay with his right shoulder and right side up to force him to use that side of his lung more.
3. They made an adjustment to the placement of the tube by pulling it out a little bit. Hoping that the vent will force him to again use that area more.
4. They have started CPT on his chest. This is where the RT beats on that place of his chest with a soft little spoungy thing to loosen up that lung and maybe even pop it out. (to be honest he LOVES this. When Marsha his home nurse would do this he would flop on his bean bag chair and sometimes even look like he was going to fall asleep).
5. They just took an additional x-ray to determine if we've made some progress.
I know I sound like a broken record, but I want to express my thanks to anyone and everyone reading this blog. Those of you that have said a prayer, put Birk on prayer chains, sent Nick and I notes of encouragement and love or anyone who has never met us, but been touched by our son's story.... you mean the world to us. We are so moved that you have allowed us to be part of your lives. Please know that we are praying for you. If you are struggling with anything know that we are praying. If there is a joy in your life, we are praying. What a great blessing it has been for us to be surrounded in prayer and we are blessed to be able to pray for you!
With love!
Nick and Jenny
It's double the giggles and double the grins, and double the trouble if you're blessed with twins Then God proves to you that two is not enough and blesses your life with another one to love.
Thursday, December 15, 2011
~~ Good News?!?! ~~
So we found out our OR time for tomorrow. Birk will go to the OR for a scope at 7:50 AM. We are excited (and yet terrified) for this! We absolutely cannot wait to hear our sweet little guy. We know this is going to be tough, but we both feel like we're ready for this. Here are the options we are looking at tomorrow:
Option 1: Everything looks great (PRAY FOR THIS). They extabate in the OR, allow him to wake up and then bring him back to the PICU so we can help him with his weening process.
Option 2: Everything looks great (PRAY FOR THIS). The conditions in the OR (timing wise) are not optimal so they bring him back to the PICU and extabate in the afternoon.
Option 3: Airway is still swollen a little and they decide to wait until Monday for extabation.
We want what is best for Birk. However, selfishly we are praying for options 1 or 2. We have heard from a few people who have experienced this in the past that this next step is not pleasant. It is challenging and difficult. Please say a prayer for the strength of both Nick and I. Please allow God to work through us as we care for Birk during these coming days and weeks.
Isaiah 41:10
"So do not fear, for I am with you: Do not be dismayed, for you are my God. I will strengthen you and help you; I will uphold you with my righteous right hand. "
Option 1: Everything looks great (PRAY FOR THIS). They extabate in the OR, allow him to wake up and then bring him back to the PICU so we can help him with his weening process.
Option 2: Everything looks great (PRAY FOR THIS). The conditions in the OR (timing wise) are not optimal so they bring him back to the PICU and extabate in the afternoon.
Option 3: Airway is still swollen a little and they decide to wait until Monday for extabation.
We want what is best for Birk. However, selfishly we are praying for options 1 or 2. We have heard from a few people who have experienced this in the past that this next step is not pleasant. It is challenging and difficult. Please say a prayer for the strength of both Nick and I. Please allow God to work through us as we care for Birk during these coming days and weeks.
Isaiah 41:10
"So do not fear, for I am with you: Do not be dismayed, for you are my God. I will strengthen you and help you; I will uphold you with my righteous right hand. "
Wednesday, December 14, 2011
Day 6 Update # 4
~~~ Birk had a great night! Yeah!! ~~~
He has had a very quiet day today too. We are so thankful for that. Nick and I both spent the night at the RMH last night. It was tough leaving him last night, but we knew we should try to get our rest before we ext abate him and he starts to come down off of his medications. It was a good nights sleep, and we are so humbled to be at the RMH. We might try to do that again tonight. I'm even thinking of going over this afternoon for a run. I miss running so much! Plus my waist line misses it a bit too.
The plan is that he will start to be weened down tomorrow night on the off chance that his airway looks good on Friday and they can just remove the tube in the OR. Then when they bring him back to the ICU they will "wake him up" or turn off his final sedation medication. At that point...we've heard the fun starts!
Nick and I have been talking about how everyone is warning us that it will be so tough to struggle and fight with Birk as he is coming down off of his medications. While we agree, it will be tough....we are also so excited to see him again. You would think that since we've been through this before (seeing our child on a vent not moving much) we'd be used to it, but truth is this time is SO HARD. Not that we didn't love him unconditionally before, this time we know the real Birk. We know his awesome laugh. We know how much he loves the CARS 2 movie song and will listen to it over and over and over again. We know that his favorite meal is mac-n-cheese, chicken nuggets, green beans, grilled cheese, and chocolate milk. He will order it for every meal if we let him. We know that his best friend in the whole world is Addy Grace. We know that his love for "Yi" will only grow as he gets bigger and goes to games with his Daddy. So, needless to say we miss that kid...even though we've spent almost every minute of the day with him we sure miss him.
~~~ Romans 8:28-29 And we know that all things work together for good to those who love God, to those who are called according to his purpose ~~~
He has had a very quiet day today too. We are so thankful for that. Nick and I both spent the night at the RMH last night. It was tough leaving him last night, but we knew we should try to get our rest before we ext abate him and he starts to come down off of his medications. It was a good nights sleep, and we are so humbled to be at the RMH. We might try to do that again tonight. I'm even thinking of going over this afternoon for a run. I miss running so much! Plus my waist line misses it a bit too.
The plan is that he will start to be weened down tomorrow night on the off chance that his airway looks good on Friday and they can just remove the tube in the OR. Then when they bring him back to the ICU they will "wake him up" or turn off his final sedation medication. At that point...we've heard the fun starts!
Nick and I have been talking about how everyone is warning us that it will be so tough to struggle and fight with Birk as he is coming down off of his medications. While we agree, it will be tough....we are also so excited to see him again. You would think that since we've been through this before (seeing our child on a vent not moving much) we'd be used to it, but truth is this time is SO HARD. Not that we didn't love him unconditionally before, this time we know the real Birk. We know his awesome laugh. We know how much he loves the CARS 2 movie song and will listen to it over and over and over again. We know that his favorite meal is mac-n-cheese, chicken nuggets, green beans, grilled cheese, and chocolate milk. He will order it for every meal if we let him. We know that his best friend in the whole world is Addy Grace. We know that his love for "Yi" will only grow as he gets bigger and goes to games with his Daddy. So, needless to say we miss that kid...even though we've spent almost every minute of the day with him we sure miss him.
~~~ Romans 8:28-29 And we know that all things work together for good to those who love God, to those who are called according to his purpose ~~~
Tuesday, December 13, 2011
Day 6 Update # 3
Again not a lot to report. Birk is still resting very comfortably. He has had a decent day. Some minor moments where he has woken up, but other than that...he is resting comfortably. We got a chance to meet with the ENT team (which was nice since we haven't really spoken much). They were very impressed with how he is doing so that was very nice. Now that we've (maybe) figured out the sedation issue it is looking very good for us.
The plan is to again go down on Friday (everyone is pushing for an earlier appt.) and possibly ext abate him in the OR. We've been warned that the 2nd round of this might be exciting. As he comes off his use of all of these drugs they've warned us that he might be a bit challenging at times. We have made the decision that this week (while he is sedated) we will try to sleep at the Ronald McDonald house as often as we can (as long as he is still behaving here in the PICU). That way we can at least start the withdrawal process well rested! :-)
Numbers 6:24-26 "The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace."
The plan is to again go down on Friday (everyone is pushing for an earlier appt.) and possibly ext abate him in the OR. We've been warned that the 2nd round of this might be exciting. As he comes off his use of all of these drugs they've warned us that he might be a bit challenging at times. We have made the decision that this week (while he is sedated) we will try to sleep at the Ronald McDonald house as often as we can (as long as he is still behaving here in the PICU). That way we can at least start the withdrawal process well rested! :-)
Numbers 6:24-26 "The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace."
Day 6 Update # 2
Birk is still having a good day so far. Please pray that the medication continues to work. He has had a restfull day.. Tonight will be the true test!
We checked into the Ronald McDonald House this morning. Man, what a facility. They are amazing to families and Nick and I are both humbled that we get to stay there. We can't wait to get back to Des Moines and do some volunteering at the Ronald McDonald house. We are excited for when Birk is up and Addy is here. They are going to love the play rooms, the snacks, the movies that they have to offer. Plus we were informed that there are shopping trips where the patients can pick out some presents for Christmas (all covered by donations to the hospital). They also make a big deal for the siblings!
I want to say a special thank you to Dan Buehrle from Principal Financial group. The Mrs. Fields cookies you sent really helped ease some of our stress for that day. Thank you for thinking of not once, but twice. The floweres in Novemer were so nice to come home to as well.
Thank you to my Learning and Development team. The balloons, candy, football and card are so nice. It really brightens up the B man's room. I know as soon as he wakes up he is going to love the balloons!!!
We checked into the Ronald McDonald House this morning. Man, what a facility. They are amazing to families and Nick and I are both humbled that we get to stay there. We can't wait to get back to Des Moines and do some volunteering at the Ronald McDonald house. We are excited for when Birk is up and Addy is here. They are going to love the play rooms, the snacks, the movies that they have to offer. Plus we were informed that there are shopping trips where the patients can pick out some presents for Christmas (all covered by donations to the hospital). They also make a big deal for the siblings!
I want to say a special thank you to Dan Buehrle from Principal Financial group. The Mrs. Fields cookies you sent really helped ease some of our stress for that day. Thank you for thinking of not once, but twice. The floweres in Novemer were so nice to come home to as well.
Thank you to my Learning and Development team. The balloons, candy, football and card are so nice. It really brightens up the B man's room. I know as soon as he wakes up he is going to love the balloons!!!
Day 6 Update #1
Today has been sort of uneventful. Praise God.
We slept in the room again last night and I only had to get up a few times to assist Birk. He seemed to respond fairly well to the sedation medicines. We're hoping that this continues through the week. We hope it wasn't just the General that he got in the OR yesterday still helping him rest. So far today he has been a bit wiggly, but overall responding like we hope we would.
The doctors just came by and did rounds. Everything is doing good. A few concerns. His blood gas was fairly high this morning. What they are looking at here is how the vent is doing for him with his breathing. For the most part the vent is doing 100% of the work. His Co2 levels were a bit high this morning so that is an indication that he is holding onto some Carbon Dioxide. They made some vent changes and we're waiting to see if that works. They also did a chest x-ray and noticed the tube is a little lower than normal. We have a call into ENT to see if they want to move that tube up. That might be a reason for the blood gas results too as the tube might be only making him use partial lung capacity! Pray for good results and healing for Birk with this matter.
Nick and I are off to check into the Ronald McDonald house this morning. We are so thankful we have a room so when Addy gets here we can get her all set up!! We also figured out the whole getting her to Cincinnati issue. Praise God for family. I'm not sure I could get through this if it weren't for them. I just hope someday we can show how grateful we are to those that have helped us.
I'm sure as the day progresses there will be more to update on. However, right now I'm thankful for a short NO BIG DEAL update! :-)
Romans 1:8 I thank my God through Jesus Christ for you!
We slept in the room again last night and I only had to get up a few times to assist Birk. He seemed to respond fairly well to the sedation medicines. We're hoping that this continues through the week. We hope it wasn't just the General that he got in the OR yesterday still helping him rest. So far today he has been a bit wiggly, but overall responding like we hope we would.
The doctors just came by and did rounds. Everything is doing good. A few concerns. His blood gas was fairly high this morning. What they are looking at here is how the vent is doing for him with his breathing. For the most part the vent is doing 100% of the work. His Co2 levels were a bit high this morning so that is an indication that he is holding onto some Carbon Dioxide. They made some vent changes and we're waiting to see if that works. They also did a chest x-ray and noticed the tube is a little lower than normal. We have a call into ENT to see if they want to move that tube up. That might be a reason for the blood gas results too as the tube might be only making him use partial lung capacity! Pray for good results and healing for Birk with this matter.
Nick and I are off to check into the Ronald McDonald house this morning. We are so thankful we have a room so when Addy gets here we can get her all set up!! We also figured out the whole getting her to Cincinnati issue. Praise God for family. I'm not sure I could get through this if it weren't for them. I just hope someday we can show how grateful we are to those that have helped us.
I'm sure as the day progresses there will be more to update on. However, right now I'm thankful for a short NO BIG DEAL update! :-)
Romans 1:8 I thank my God through Jesus Christ for you!
Monday, December 12, 2011
Day 5 Update # 4
We aren't in Kansas anymore!
So we've been to Cincinnati a number of times before, but we've never lived here. We stayed for just shy of a week in July of 2010 and then a night here or a night there. This is a real experience for us.
Our nurses told us that after the night we had last night and the day we had today (nothing bad...just exhausting) that we should go out for dinner and just get out of the hospital. We finished up with the work we had for the day and then took off. We had a great little Sushi dinner and then walked the mall for a bit. We found a couple extra Christmas presents for the twins and decided to come back home. We found out on the way back that we got a room at the Ronald McDonald House so we will check in tomorrow morning. That will be nice to have that done for when Addy gets here this weekend.
On our drive back from dinner and the mall we were discussing the neighborhood around the hospital and just the atmosphere of parts of Cincinnati. If driving in the dark you want to make sure not to make eye contact with people, don't look to obvious and really be quick and get where you need to be. We heard stories from nurses about the gang fights around the area. Man, what a change. I miss my sweet little Ankeny home where my neighbors are amazing, everyone is friendly...and everyone knows my name....(well ok, I went to far with that one).
While I feel like I have a small connection with Cincinnati these days, I've debated even becoming a Bengels or Reds fan I am still ready to get home! :-)
Only 3 more weeks...
So we've been to Cincinnati a number of times before, but we've never lived here. We stayed for just shy of a week in July of 2010 and then a night here or a night there. This is a real experience for us.
Our nurses told us that after the night we had last night and the day we had today (nothing bad...just exhausting) that we should go out for dinner and just get out of the hospital. We finished up with the work we had for the day and then took off. We had a great little Sushi dinner and then walked the mall for a bit. We found a couple extra Christmas presents for the twins and decided to come back home. We found out on the way back that we got a room at the Ronald McDonald House so we will check in tomorrow morning. That will be nice to have that done for when Addy gets here this weekend.
On our drive back from dinner and the mall we were discussing the neighborhood around the hospital and just the atmosphere of parts of Cincinnati. If driving in the dark you want to make sure not to make eye contact with people, don't look to obvious and really be quick and get where you need to be. We heard stories from nurses about the gang fights around the area. Man, what a change. I miss my sweet little Ankeny home where my neighbors are amazing, everyone is friendly...and everyone knows my name....(well ok, I went to far with that one).
While I feel like I have a small connection with Cincinnati these days, I've debated even becoming a Bengels or Reds fan I am still ready to get home! :-)
Only 3 more weeks...
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