Isaac got the all clear to come home on Wednesday July 10th! His last appointment with Dr. G was on the 9th when he got his last tube out. We've been home for little over a week and it feels great! Isaac has even begun cathing completely independently within that time.
We are so thankful for the journey we have been on. It hasn't been easy or pretty, but there has been growth and change in us all. And while I do not want to go through it again, I'm glad it happened. The independence and confidence that this surgery has provided Isaac has been clearly evident. The last four days there, it was Isaac, Micah and I, as everyone else came home on the 6th. Isaac talked non stop to everyone he saw, in the house, out in public, you name it. He met a few new friends that had this same surgery! (which when we left he cried because he was happy to be going home and sad to be leaving his new friends). He showed friends he met in the house who also had the same surgery his new belly button (stoma where he caths) and even shared how he caths. I could tell in that short week of cath training his confidence had grown. He knew this brought him independence.
This is a picture of Isaac's beads of courage that he received while in the hospital. Every bead represents every poke, surgery, tube, overnight stay, days without anything by mouth, ICU time, traveling far, etc. that he went through here. He even received one for brushing his teeth after a week of having nothing in his mouth. When I think back to the first couple days post surgery, it feels like eons ago. The pain and pokes and prods he went through is pretty incredible. I even heard from some nurses there that this is one of the most painful surgeries they see kids go through at the hospital. I can tell honestly is still recovering even and regaining the strength he lost during that time. Just pushing himself up the road is taxing on him.
We have witnessed the power of prayer and felt the immense love from our family, friends, community and even strangers. I will never stop being in awe of the amazing power of love and prayer during times like this. During the especially hard days, we knew we were being carried by the prayers of others. Time in the hospital is never fun, but often, it brings me back to baseline and reminds me of all the blessings in my life and the really important things.
As Isaac continues to heal, if you are looking for prayer requests, we ask for continued prayers of healing. We also ask for continued independence and confidence as Isaac moves towards school days and learning this new routine at school. We will go back to Baltimore in November for a check up and until then, he must cath every two hours (during the day). Isaac has not complained once, but two hours goes by very quickly. Dr. G explained that his bladder will grow to the size of a typical 8 year old during the 6 months post surgery, and we pray for perfect growth for his bladder as well.
We realize we are very lucky on this journey. We know a few other kiddos that have had this same surgery and had complications and even failed outcomes from it. We do not take any of this journey for granted and we would ask for prayers for our friends, that they will be led to a path of healing and a successful outcome.
Thank you, from the bottom of our hearts for all the support.
Tuesday, August 6, 2019
Monday, July 8, 2019
Last leg!
We are on our last leg of our visit! Isaac had cath training last Tuesday and has been doing great with it! Our rental home was over Saturday, July 6 so everyone except, Isaac, myself and the baby, all headed back home! We are ready to be back, but have one more appointment tomorrow to get his last tube removed. We have also needed to practice cathing to be sure we are proficient with it before we leave town.
Isaac has been doing wonderful! We've had a few small hiccups along the way, but everything was easy to troubleshoot with the on call doctors and nurses.
We've had a balance of staying in and healing and getting out to see the city. It is a big challenge to get 5 kids up and ready and out the door, along with Isaac's medical needs, but we've been super glad to see places like DC, Gettysburg, The Baltimore Aquarium and Port Discovery Children's Museum. We went there yesterday, and I wish we would have gone sooner!
Today we are wrapping up a few things and Isaac is playing on my phone, so I'll post pictures later! Thank you all for the thoughts and prayers!
Isaac has been doing wonderful! We've had a few small hiccups along the way, but everything was easy to troubleshoot with the on call doctors and nurses.
We've had a balance of staying in and healing and getting out to see the city. It is a big challenge to get 5 kids up and ready and out the door, along with Isaac's medical needs, but we've been super glad to see places like DC, Gettysburg, The Baltimore Aquarium and Port Discovery Children's Museum. We went there yesterday, and I wish we would have gone sooner!
Today we are wrapping up a few things and Isaac is playing on my phone, so I'll post pictures later! Thank you all for the thoughts and prayers!
Tuesday, June 18, 2019
Delayed Post- Discharge, Outings and Birthdays!
Family and Friends,
I am so sorry but I half forgot, and half just couldn't get to my computer long enough to write an updated blog post. If you aren't on Facebook, you probably haven't heard, that Isaac was discharged from the hospital! One week ago today!
We waited and waited for his tummy to wake up, and once it did, he kept moving in the right direction with fluids and foods and before we knew it, he was getting discharged!
We've been home all together in our home away from home for the past week and it has been nice! Dan of course is traveling back to Columbus on Mondays and returning on Fridays, but all the kids are together and while at times Isaac calls it "mayhem" with his little sisters, it really is wonderful having them together. Ultimately, I think this "normalcy" helps with his healing.
He left the hospital with a urinary tube coming out of his bladder which leads to a urine bag. He has this while his bladder heals. He's done a good job of limiting his mobility- no scooting right now, and keeping track of the tubes.
We have been able to do a couple outings- Ft. McHenry and Washington DC!
And, Isaac had a birthday- on Father's Day this year! It was a big and fun weekend!
Thank you all for your continued prayers. Right now, Isaac has to eat as much as he wants, so his body can heal, drink alot and enjoy his time here. We are so thankful for everyone's support and prayers.
I am so sorry but I half forgot, and half just couldn't get to my computer long enough to write an updated blog post. If you aren't on Facebook, you probably haven't heard, that Isaac was discharged from the hospital! One week ago today!
We waited and waited for his tummy to wake up, and once it did, he kept moving in the right direction with fluids and foods and before we knew it, he was getting discharged!
We've been home all together in our home away from home for the past week and it has been nice! Dan of course is traveling back to Columbus on Mondays and returning on Fridays, but all the kids are together and while at times Isaac calls it "mayhem" with his little sisters, it really is wonderful having them together. Ultimately, I think this "normalcy" helps with his healing.
He left the hospital with a urinary tube coming out of his bladder which leads to a urine bag. He has this while his bladder heals. He's done a good job of limiting his mobility- no scooting right now, and keeping track of the tubes.
We have been able to do a couple outings- Ft. McHenry and Washington DC!
And, Isaac had a birthday- on Father's Day this year! It was a big and fun weekend!
Thank you all for your continued prayers. Right now, Isaac has to eat as much as he wants, so his body can heal, drink alot and enjoy his time here. We are so thankful for everyone's support and prayers.
Monday, June 10, 2019
Hallelujah!
"Mom! Put this on the blog!"
* note- that cup actually says, root beer ;)
We've had lots of great progress since our last post! Isaac's tummy finally woke up and while at first we waited to get the go ahead for clear liquids, since then, he got regular liquids this morning and then got the OK to eat anything for dinner! Isaac was sooo excited! We let him order whatever he wanted and that he did- Cheeseburger, Pizza, baked potato, applesauce, cookie, chocolate milk (and carrots, only because the dietician made me feel guilty when she said, that's a lot of starches.)
He enjoyed his feast. For several days he was asking for free smells of food. It became very funny and he was such a good sport about his hunger pains. After 2 weeks of not eating he has earned every bite!
The pizza wasn't very good, so we broke out of the room and went to the cafeteria and got Noble Roman's which is way better. Now we are just chilling and watching "secrets of disney pixar movies" on youtube. It's a fun little date.
On the way back we took a short cut through the courtyard and saw the beautiful light up play space.
Yesterday Isaac also got unhooked from all IV meds too! It's been a big couple of days in progress and we are so thankful!
We've had lots of great progress since our last post! Isaac's tummy finally woke up and while at first we waited to get the go ahead for clear liquids, since then, he got regular liquids this morning and then got the OK to eat anything for dinner! Isaac was sooo excited! We let him order whatever he wanted and that he did- Cheeseburger, Pizza, baked potato, applesauce, cookie, chocolate milk (and carrots, only because the dietician made me feel guilty when she said, that's a lot of starches.)
He enjoyed his feast. For several days he was asking for free smells of food. It became very funny and he was such a good sport about his hunger pains. After 2 weeks of not eating he has earned every bite!
The pizza wasn't very good, so we broke out of the room and went to the cafeteria and got Noble Roman's which is way better. Now we are just chilling and watching "secrets of disney pixar movies" on youtube. It's a fun little date.
On the way back we took a short cut through the courtyard and saw the beautiful light up play space.
Yesterday Isaac also got unhooked from all IV meds too! It's been a big couple of days in progress and we are so thankful!
Thursday, June 6, 2019
Patience
Today is 6 days post op. He has been in bed since Friday night (aside from sitting in a wheelchair for a little bit yesterday). He hasn't eaten anything solid for 8 days and hasn't drank anything for 7 days.
He has been patient, though it is wearing on him. Yesterday was not a hard day in terms of pain, but emotionally, he's getting bored. And the meds that he is on are making him feel a little strange and a little down. But the nurse said he is way ahead of the curve on pain meds. He pushed his pain button maybe once yesterday. He does not like taking the meds. He was even dry heaving throughout the day yesterday and every time we offered zofran he said, no, I feel better now. Perhaps some of his pain is reduced because his feeling is spotty in areas around his abdomen, but the incision goes past his line of not feeling, and it seems like he is in the most pain when he moves. But for some reason, he doesn't want the meds. So to him, laying still in one position feel safest.
We are patiently waiting for his tummy to wake up. It's been through a lot and been shut down for awhile so it takes time. They won't try clamping his NG tube which is a tube going from his tummy to his nose until he gets less output from it. It is currently sucking up normal stomach juices like saliva and bile since his tummy isn't awake yet. Once they clamp it, they can try liquids by mouth. So since he has only had IV fluids and no nutrition, they are beginning TPN today. This is a form of IV nutrition. Dan and I both agreed we wished he didn't need to go on this, however we know he needs the nutrition and we are hoping this will help give him a little more energy.
I know this all sounds like a downer update, but it really isn't. He is progressing. Healing takes time. His little body has been through a lot. His abdomen has been cut and put back together. It's pretty amazing what surgeons can do, and how resilient his little body is. In a world where everything is fast and at the blink of a fingertip tap, it makes waiting seem like a bad thing. But perhaps waiting isn't always bad.
Isaac, Dan and I (and tag along Micah), have had a lot of time together. I've gotten to read stories to Isaac, climb into bed and take silly selfies, learn a little X-Box and just sometimes be quiet together. I know being in the hospital seems like the most awful thing, and admittedly there are a million other things I would rather being doing with Isaac. And I certainly would trade places with him in a millisecond, but honestly, there is something peaceful about the slowly down of time in the hospital (from a patient/parent side). Normally my day starts by 5:00 am and ends around 11:00pm. That pretty much is the same, but right now it is 8:00, Isaac is quietly sleeping and I'm able to sit and be still. It isn't always like that, the night before last Isaac was up most of the night, but sometimes, there is quiet.
I walk around this miniature city inside Johns Hopkins. There are so many people to see, and parts of the hospital. Some things hopeful, some things very sad. I don't know people's stories, but I wonder about them. It puts life into perspective. There is so much more than this problem of mine or his.
Then I think of the outside world. I miss my girls and Gabe. I'm so thankful that I get to see them daily, even if just for a little bit. Not everyone gets that in a long hospital stay. And they are having so much fun with Grammie and Papa. Their lives are being enriched. It is an adventure, for us all. And I'm thankful for that.
Being in the hospital makes me think about gratitude and moving forward one step at a time. Today, I am thankful for this peace of the morning. The rest of the day may prove to be busy, or maybe not. I'm going to take Isaac on a walk out of his room, and finally brush his teeth. I feel as though today is a new day.
Today we will find hope in the little things and be patient about the things out of our control. We will find the humor which is something my mom always told me and we will allow ourselves to fall into the patience.
He has been patient, though it is wearing on him. Yesterday was not a hard day in terms of pain, but emotionally, he's getting bored. And the meds that he is on are making him feel a little strange and a little down. But the nurse said he is way ahead of the curve on pain meds. He pushed his pain button maybe once yesterday. He does not like taking the meds. He was even dry heaving throughout the day yesterday and every time we offered zofran he said, no, I feel better now. Perhaps some of his pain is reduced because his feeling is spotty in areas around his abdomen, but the incision goes past his line of not feeling, and it seems like he is in the most pain when he moves. But for some reason, he doesn't want the meds. So to him, laying still in one position feel safest.
We are patiently waiting for his tummy to wake up. It's been through a lot and been shut down for awhile so it takes time. They won't try clamping his NG tube which is a tube going from his tummy to his nose until he gets less output from it. It is currently sucking up normal stomach juices like saliva and bile since his tummy isn't awake yet. Once they clamp it, they can try liquids by mouth. So since he has only had IV fluids and no nutrition, they are beginning TPN today. This is a form of IV nutrition. Dan and I both agreed we wished he didn't need to go on this, however we know he needs the nutrition and we are hoping this will help give him a little more energy.
I know this all sounds like a downer update, but it really isn't. He is progressing. Healing takes time. His little body has been through a lot. His abdomen has been cut and put back together. It's pretty amazing what surgeons can do, and how resilient his little body is. In a world where everything is fast and at the blink of a fingertip tap, it makes waiting seem like a bad thing. But perhaps waiting isn't always bad.
Isaac, Dan and I (and tag along Micah), have had a lot of time together. I've gotten to read stories to Isaac, climb into bed and take silly selfies, learn a little X-Box and just sometimes be quiet together. I know being in the hospital seems like the most awful thing, and admittedly there are a million other things I would rather being doing with Isaac. And I certainly would trade places with him in a millisecond, but honestly, there is something peaceful about the slowly down of time in the hospital (from a patient/parent side). Normally my day starts by 5:00 am and ends around 11:00pm. That pretty much is the same, but right now it is 8:00, Isaac is quietly sleeping and I'm able to sit and be still. It isn't always like that, the night before last Isaac was up most of the night, but sometimes, there is quiet.
I walk around this miniature city inside Johns Hopkins. There are so many people to see, and parts of the hospital. Some things hopeful, some things very sad. I don't know people's stories, but I wonder about them. It puts life into perspective. There is so much more than this problem of mine or his.
Then I think of the outside world. I miss my girls and Gabe. I'm so thankful that I get to see them daily, even if just for a little bit. Not everyone gets that in a long hospital stay. And they are having so much fun with Grammie and Papa. Their lives are being enriched. It is an adventure, for us all. And I'm thankful for that.
Being in the hospital makes me think about gratitude and moving forward one step at a time. Today, I am thankful for this peace of the morning. The rest of the day may prove to be busy, or maybe not. I'm going to take Isaac on a walk out of his room, and finally brush his teeth. I feel as though today is a new day.
Today we will find hope in the little things and be patient about the things out of our control. We will find the humor which is something my mom always told me and we will allow ourselves to fall into the patience.
Monday, June 3, 2019
Part 2- progress Monday afternoon
Well, in the midst of writing and not getting side tracked before publishing part one, Isaac took a great nap and when he woke up, he perked up. Papa (John) had brought over Gabe, Hila and Mary and Isaac starting playing X-Box with Gabe. Isaac starting talking more and even trash talking the X-Box. This was a big boost in his spirits!
He has asked for goldfish crackers and pizza since the afternoon (which is the first he has mentioned food since before surgery). Unfortunately, he can't eat yet, but we are seeing some signs that his bowels are waking up, so these are all steps in the right direction!
Tonight his good buddy Crosby FaceTimed him and it is the most vocal Isaac was all day! He really enjoyed talking to him and had me turn back on the Xbox so he could show Crosby the Xbox game. I am sure Isaac will be asking for to purchase "Wipeout" when we get home so he can actually play it with his friends.
Tonight, we are watching Thor and he is resting. It is a peaceful evening to an afternoon with lots of positives!
Part 1: Sunday & Monday morning update
We have had a couple of quiet days of slow and steady progress here for Isaac. He is tolerating the pain really well. He does have some pain and is pretty reluctant to hit his pain medication button, so when he does ask for it, we know he really needs it. I've overheard his nurse from the weekend telling the nurse coming on duty that he is a tough little guy and pushes through the pain.
Most of the time he watches TV and is in and out of sleep. The meds make him sleepy, but each day he seems to be awake a little more. Today, Isaac just wants me to be near him and rub his head. I can tell he seems a little more uncomfortable today, but overall, he really is doing well.
Yesterday he said he wanted to make legos with mommy. So of course we jumped at the chance. We made a new Star Wars Ty-fighter (I'm sure I didn't spell that right- I may not be well versed in my star wars battle ships!). He did great and even made it 30 minutes past his pain med dose so he could finish it. I told him to smile for a picture when he finished his lego, and he gave me his best smile for the moment. I sure do miss his big smile, but I know he will have it back soon.
Right now, we are working on his tummy healing, his bowels and stomach to wake up, and keeping his pain controlled. The NG tube in his nose is sucking out stomach juices, so once his stomach wakes and starts taking away those stomach juices, then we can try clamping the NG tube and seeing how he does with some liquids. We pray that happens soon.
The hospital is huge and Dan and Micah took a walk exploring yesterday while we built legos. There is so much history in this hospital and he shared some very pretty pictures with me of the original building. I'm hoping once Isaac is able to get out of bed, I can take him on a walk around. He may find some of it interesting since he loves history (then again- he may just like the playroom and change of scenery!) I feel like I am in a city within a city in the hospital.
The kids have been stopping by daily with Grammie and Papa to visit Isaac. It is so helpful to have them close by. I miss them, but the fact that I can see them a little bit each day makes the world of difference and having Isaac see them is a highlight of his day. Micah has been with me the whole time since Dan is still in town and Isaac always asks to rub Micah's head when he sees him.
Most of the time he watches TV and is in and out of sleep. The meds make him sleepy, but each day he seems to be awake a little more. Today, Isaac just wants me to be near him and rub his head. I can tell he seems a little more uncomfortable today, but overall, he really is doing well.
Yesterday he said he wanted to make legos with mommy. So of course we jumped at the chance. We made a new Star Wars Ty-fighter (I'm sure I didn't spell that right- I may not be well versed in my star wars battle ships!). He did great and even made it 30 minutes past his pain med dose so he could finish it. I told him to smile for a picture when he finished his lego, and he gave me his best smile for the moment. I sure do miss his big smile, but I know he will have it back soon.
Right now, we are working on his tummy healing, his bowels and stomach to wake up, and keeping his pain controlled. The NG tube in his nose is sucking out stomach juices, so once his stomach wakes and starts taking away those stomach juices, then we can try clamping the NG tube and seeing how he does with some liquids. We pray that happens soon.
The hospital is huge and Dan and Micah took a walk exploring yesterday while we built legos. There is so much history in this hospital and he shared some very pretty pictures with me of the original building. I'm hoping once Isaac is able to get out of bed, I can take him on a walk around. He may find some of it interesting since he loves history (then again- he may just like the playroom and change of scenery!) I feel like I am in a city within a city in the hospital.
The kids have been stopping by daily with Grammie and Papa to visit Isaac. It is so helpful to have them close by. I miss them, but the fact that I can see them a little bit each day makes the world of difference and having Isaac see them is a highlight of his day. Micah has been with me the whole time since Dan is still in town and Isaac always asks to rub Micah's head when he sees him.
Subscribe to:
Posts (Atom)